tag:blogger.com,1999:blog-78112747010090893452024-03-14T04:28:44.571-04:00Myeloma Fighter's Blog 12 year Multiple Myeloma survivor's BlogThe Myeloma Fighterhttp://www.blogger.com/profile/13967193310174306702noreply@blogger.comBlogger67125tag:blogger.com,1999:blog-7811274701009089345.post-25452987486113121942017-01-23T21:12:00.000-05:002017-01-23T21:12:56.099-05:00C’est avec un grand chagrin que nous devons vous annoncer qu’après plus de 13 ans de lutte contre le myélome multiple, la belle flamme d’Yvon s’est éteinte la semaine dernière.<br />
En son nom, la famille désire vous remercier pour votre soutient au cours des dernières années, Yvon a encaissé un long combat, parsemé de hauts et de bas, mais toujours avec la force et le positivisme qu’on lui connaît.<br />
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It is with indescribable sadness that we must let you know that, after more than 13 years battling multiple myeloma, Yvon passed away last week.<br />
In his name, the family wishes to thank you all for your support through the years, Yvon has faced a long struggle, with its share of ups and downs, but always with strength and a wonderful and positive attitude.The Myeloma Fighterhttp://www.blogger.com/profile/13967193310174306702noreply@blogger.com0tag:blogger.com,1999:blog-7811274701009089345.post-76786511868012430092016-03-06T21:27:00.000-05:002016-03-06T21:27:21.615-05:00Cryoglobulinemia What is it and how it affects some Multiple #Myeloma patients!<h1 class="with-also" style="border: 0px; color: #404040; font-family: inherit; font-size: 1.71429em; font-stretch: inherit; font-style: inherit; font-variant: inherit; font-weight: bold; line-height: 1em; margin: 0px; padding: 0px; vertical-align: baseline;">
Cryoglobulinemia</h1>
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Cryoglobulinemia is the presence of abnormal <a href="https://www.nlm.nih.gov/medlineplus/ency/article/002467.htm" id="anch_24" style="border: 0px; color: #993366; font-family: inherit; font-size: inherit; font-stretch: inherit; font-style: inherit; font-variant: inherit; font-weight: inherit; line-height: inherit; margin: 0px; outline: 0px; padding: 0px; text-decoration: none; vertical-align: baseline;">proteins</a> in the blood. These proteins thicken in cold temperatures.</div>
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Causes</h2>
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Cryoglobulins are <a href="https://www.nlm.nih.gov/medlineplus/ency/article/002223.htm" id="anch_25" style="border: 0px; color: #993366; font-family: inherit; font-size: inherit; font-stretch: inherit; font-style: inherit; font-variant: inherit; font-weight: inherit; line-height: inherit; margin: 0px; outline: 0px; padding: 0px; text-decoration: none; vertical-align: baseline;">antibodies</a>. It is not yet known why they become solid or gel-like at low temperatures. When this occurs, these antibodies can cause inflammation and block blood vessels. This may lead to problems ranging from skin rashes to kidney failure.</div>
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Cryoglobulinemia is part of a group of diseases that cause damage and inflammation of the blood vessels throughout the body (vasculitis). There are three main types of cryoglobulinemia. They are grouped based on the type of <a href="https://www.nlm.nih.gov/medlineplus/ency/article/002223.htm" id="anch_26" style="border: 0px; color: #993366; font-family: inherit; font-size: inherit; font-stretch: inherit; font-style: inherit; font-variant: inherit; font-weight: inherit; line-height: inherit; margin: 0px; outline: 0px; padding: 0px; text-decoration: none; vertical-align: baseline;">antibody</a> that is produced:</div>
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Types II and III are also referred to as mixed cryoglobulinemia<em style="border: 0px; font-family: inherit; font-size: inherit; font-stretch: inherit; font-variant: inherit; font-weight: inherit; line-height: inherit; margin: 0px; padding: 0px; vertical-align: baseline;">.</em></div>
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Type I cryoglobulinemia is most often related to cancer of the blood or immune systems.</div>
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Types II and III are most often found in people who have a chronic (long-lasting) inflammatory condition, such as an <a href="https://www.nlm.nih.gov/medlineplus/ency/article/000816.htm" id="anch_27" style="border: 0px; color: #993366; font-family: inherit; font-size: inherit; font-stretch: inherit; font-style: inherit; font-variant: inherit; font-weight: inherit; line-height: inherit; margin: 0px; outline: 0px; padding: 0px; text-decoration: none; vertical-align: baseline;">autoimmune disease</a> or hepatitis C. Most people with this form of the disease have a chronic hepatitis C infection.</div>
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Other conditions that may be related to cryoglobulinemia include:</div>
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Symptoms</h2>
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Symptoms will vary depending on the type of disorder you have and the organs that are involved. Symptoms may include:</div>
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<li style="border: 0px; font-family: inherit; font-size: inherit; font-stretch: inherit; font-style: inherit; font-variant: inherit; font-weight: inherit; line-height: 1.28571em; margin: 0px 0px 0.85714em; padding: 0px; text-align: left; vertical-align: baseline;">Breathing problems</li>
<li style="border: 0px; font-family: inherit; font-size: inherit; font-stretch: inherit; font-style: inherit; font-variant: inherit; font-weight: inherit; line-height: 1.28571em; margin: 0px 0px 0.85714em; padding: 0px; text-align: left; vertical-align: baseline;">Fatigue</li>
<li style="border: 0px; font-family: inherit; font-size: inherit; font-stretch: inherit; font-style: inherit; font-variant: inherit; font-weight: inherit; line-height: 1.28571em; margin: 0px 0px 0.85714em; padding: 0px; text-align: left; vertical-align: baseline;"><a href="https://www.nlm.nih.gov/medlineplus/ency/article/000484.htm" id="anch_31" style="border: 0px; color: #993366; font-family: inherit; font-size: inherit; font-stretch: inherit; font-style: inherit; font-variant: inherit; font-weight: inherit; line-height: inherit; margin: 0px; outline: 0px; padding: 0px; text-decoration: none; vertical-align: baseline;">Glomerulonephritis</a></li>
<li style="border: 0px; font-family: inherit; font-size: inherit; font-stretch: inherit; font-style: inherit; font-variant: inherit; font-weight: inherit; line-height: 1.28571em; margin: 0px 0px 0.85714em; padding: 0px; text-align: left; vertical-align: baseline;">Joint pain</li>
<li style="border: 0px; font-family: inherit; font-size: inherit; font-stretch: inherit; font-style: inherit; font-variant: inherit; font-weight: inherit; line-height: 1.28571em; margin: 0px 0px 0.85714em; padding: 0px; text-align: left; vertical-align: baseline;">Muscle pain</li>
<li style="border: 0px; font-family: inherit; font-size: inherit; font-stretch: inherit; font-style: inherit; font-variant: inherit; font-weight: inherit; line-height: 1.28571em; margin: 0px 0px 0.85714em; padding: 0px; text-align: left; vertical-align: baseline;"><a href="https://www.nlm.nih.gov/medlineplus/ency/article/003232.htm" id="anch_32" style="border: 0px; color: #993366; font-family: inherit; font-size: inherit; font-stretch: inherit; font-style: inherit; font-variant: inherit; font-weight: inherit; line-height: inherit; margin: 0px; outline: 0px; padding: 0px; text-decoration: none; vertical-align: baseline;">Purpura</a></li>
<li style="border: 0px; font-family: inherit; font-size: inherit; font-stretch: inherit; font-style: inherit; font-variant: inherit; font-weight: inherit; line-height: 1.28571em; margin: 0px 0px 0.85714em; padding: 0px; text-align: left; vertical-align: baseline;"><a href="https://www.nlm.nih.gov/medlineplus/ency/article/000412.htm" id="anch_33" style="border: 0px; color: #993366; font-family: inherit; font-size: inherit; font-stretch: inherit; font-style: inherit; font-variant: inherit; font-weight: inherit; line-height: inherit; margin: 0px; outline: 0px; padding: 0px; text-decoration: none; vertical-align: baseline;">Raynaud's phenomenon</a></li>
<li style="border: 0px; font-family: inherit; font-size: inherit; font-stretch: inherit; font-style: inherit; font-variant: inherit; font-weight: inherit; line-height: 1.28571em; margin: 0px 0px 0.85714em; padding: 0px; text-align: left; vertical-align: baseline;">Skin death</li>
<li style="border: 0px; font-family: inherit; font-size: inherit; font-stretch: inherit; font-style: inherit; font-variant: inherit; font-weight: inherit; line-height: 1.28571em; margin: 0px 0px 0.85714em; padding: 0px; text-align: left; vertical-align: baseline;">Skin ulcers</li>
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Exams and Tests</h2>
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Treatment</h2>
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Mixed cryoglobulinemia (Types II and III)</div>
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Mild or moderate forms of cryoglobulinemia can often be treated by taking steps to deal with the underlying cause.</div>
<ul style="border: 0px; font-family: inherit; font-size: inherit; font-stretch: inherit; font-style: inherit; font-variant: inherit; font-weight: inherit; line-height: inherit; margin: 0.5em 0px 1.42857em; padding: 0px 0px 0px 0.5em; vertical-align: baseline; word-wrap: break-word;">
<li style="border: 0px; font-family: inherit; font-size: inherit; font-stretch: inherit; font-style: inherit; font-variant: inherit; font-weight: inherit; line-height: 1.28571em; margin: 0px 0px 0.85714em; padding: 0px; text-align: left; vertical-align: baseline;">Mild cases can be treated by avoiding cold temperatures.</li>
<li style="border: 0px; font-family: inherit; font-size: inherit; font-stretch: inherit; font-style: inherit; font-variant: inherit; font-weight: inherit; line-height: 1.28571em; margin: 0px 0px 0.85714em; padding: 0px; text-align: left; vertical-align: baseline;">Standard hepatitis treatments work for most people who have hepatitis C and mild or moderate disease. The condition can come back when treatment stops.</li>
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Severe cryoglobulinemia involves vital organs or large areas of skin. It is treated with corticosteroids and other medicines that suppress the immune system.</div>
<ul style="border: 0px; font-family: inherit; font-size: inherit; font-stretch: inherit; font-style: inherit; font-variant: inherit; font-weight: inherit; line-height: inherit; margin: 0.5em 0px 1.42857em; padding: 0px 0px 0px 0.5em; vertical-align: baseline; word-wrap: break-word;">
<li style="border: 0px; font-family: inherit; font-size: inherit; font-stretch: inherit; font-style: inherit; font-variant: inherit; font-weight: inherit; line-height: 1.28571em; margin: 0px 0px 0.85714em; padding: 0px; text-align: left; vertical-align: baseline;">Rituximab is an effective drug and has fewer risks than other medicines.</li>
<li style="border: 0px; font-family: inherit; font-size: inherit; font-stretch: inherit; font-style: inherit; font-variant: inherit; font-weight: inherit; line-height: 1.28571em; margin: 0px 0px 0.85714em; padding: 0px; text-align: left; vertical-align: baseline;">Cyclophosphamide is used in life-threatening conditions where rituximab is not working or available. This medicine was used often in the past.</li>
<li style="border: 0px; font-family: inherit; font-size: inherit; font-stretch: inherit; font-style: inherit; font-variant: inherit; font-weight: inherit; line-height: 1.28571em; margin: 0px 0px 0.85714em; padding: 0px; text-align: left; vertical-align: baseline;">A treatment called plasmaphereis is also used. In this his procedure, blood plasma is taken out of blood circulation and abnormal cryoglobulin antibody proteins are removed. The plasma is replaced by fluid, protein, or donated plasma.</li>
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Type I cryoglobulinemia:</div>
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This disorder is due to a cancer of the blood or immune system such as <a href="https://www.nlm.nih.gov/medlineplus/ency/article/000538.htm" id="anch_44" style="border: 0px; color: #993366; font-family: inherit; font-size: inherit; font-stretch: inherit; font-style: inherit; font-variant: inherit; font-weight: inherit; line-height: inherit; margin: 0px; outline: 0px; padding: 0px; text-decoration: none; vertical-align: baseline;">multiple myeloma</a>. Treatment is directed against the abnormal cancer cells that produce the cryoglobulin.</div>
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Outlook (Prognosis)</h2>
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<span style="font-family: inherit; font-size: inherit; font-style: inherit; font-variant: inherit; font-weight: inherit; line-height: inherit;">Most of the time, mixed cryoglobulinemia does not lead to death. Outlook can be poor if the kidneys are affected.</span></div>
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Possible Complications</h2>
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Complications include:</div>
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<li style="border: 0px; font-family: inherit; font-size: inherit; font-stretch: inherit; font-style: inherit; font-variant: inherit; font-weight: inherit; line-height: 1.28571em; margin: 0px 0px 0.85714em; padding: 0px; text-align: left; vertical-align: baseline;">Bleeding in the digestive tract (rare)</li>
<li style="border: 0px; font-family: inherit; font-size: inherit; font-stretch: inherit; font-style: inherit; font-variant: inherit; font-weight: inherit; line-height: 1.28571em; margin: 0px 0px 0.85714em; padding: 0px; text-align: left; vertical-align: baseline;">Heart disease (rare)</li>
<li style="border: 0px; font-family: inherit; font-size: inherit; font-stretch: inherit; font-style: inherit; font-variant: inherit; font-weight: inherit; line-height: 1.28571em; margin: 0px 0px 0.85714em; padding: 0px; text-align: left; vertical-align: baseline;">Infections of ulcers</li>
<li style="border: 0px; font-family: inherit; font-size: inherit; font-stretch: inherit; font-style: inherit; font-variant: inherit; font-weight: inherit; line-height: 1.28571em; margin: 0px 0px 0.85714em; padding: 0px; text-align: left; vertical-align: baseline;">Kidney failure</li>
<li style="border: 0px; font-family: inherit; font-size: inherit; font-stretch: inherit; font-style: inherit; font-variant: inherit; font-weight: inherit; line-height: 1.28571em; margin: 0px 0px 0.85714em; padding: 0px; text-align: left; vertical-align: baseline;">Liver failure</li>
<li style="border: 0px; font-family: inherit; font-size: inherit; font-stretch: inherit; font-style: inherit; font-variant: inherit; font-weight: inherit; line-height: 1.28571em; margin: 0px 0px 0.85714em; padding: 0px; text-align: left; vertical-align: baseline;">Skin death</li>
<li style="border: 0px; font-family: inherit; font-size: inherit; font-stretch: inherit; font-style: inherit; font-variant: inherit; font-weight: inherit; line-height: 1.28571em; margin: 0px 0px 0.85714em; padding: 0px; text-align: left; vertical-align: baseline;">Death</li>
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When to Contact a Medical Professional</h2>
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Call your health care provider if:</div>
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<li style="border: 0px; font-family: inherit; font-size: inherit; font-stretch: inherit; font-style: inherit; font-variant: inherit; font-weight: inherit; line-height: 1.28571em; margin: 0px 0px 0.85714em; padding: 0px; text-align: left; vertical-align: baseline;">You develop symptoms of cryoglobulinemia.</li>
<li style="border: 0px; font-family: inherit; font-size: inherit; font-stretch: inherit; font-style: inherit; font-variant: inherit; font-weight: inherit; line-height: 1.28571em; margin: 0px 0px 0.85714em; padding: 0px; text-align: left; vertical-align: baseline;">You have hepatitis C and develop symptoms of cryoglobulinemia.</li>
<li style="border: 0px; font-family: inherit; font-size: inherit; font-stretch: inherit; font-style: inherit; font-variant: inherit; font-weight: inherit; line-height: 1.28571em; margin: 0px 0px 0.85714em; padding: 0px; text-align: left; vertical-align: baseline;">You have cryoglobulinemia and develop new or worsening symptoms.</li>
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The Myeloma Fighterhttp://www.blogger.com/profile/13967193310174306702noreply@blogger.com0tag:blogger.com,1999:blog-7811274701009089345.post-58524612743924903902016-02-14T18:28:00.001-05:002016-02-14T18:28:58.129-05:00$10.00 donation to CIBMTR and ASBMT for every 10 Tweets and Retweets which include the Hashtags #IMambo4Myeloma and #BMTTandem16<a class="_58cn" data-ft="{"tn":"*N","type":104}" href="https://www.facebook.com/hashtag/imamboformyeloma" style="background-color: white; color: #3b5998; cursor: pointer; font-family: helvetica, arial, sans-serif; font-size: 14px; line-height: 18px; text-decoration: none;">#IMamboforMyeloma</a><span style="background-color: white; color: #141823; font-family: helvetica, arial, sans-serif; font-size: 14px; line-height: 18px;"> is going to </span><a class="_58cn" data-ft="{"tn":"*N","type":104}" href="https://www.facebook.com/hashtag/bmttandem16" style="background-color: white; color: #3b5998; cursor: pointer; font-family: helvetica, arial, sans-serif; font-size: 14px; line-height: 18px; text-decoration: none;">#BMTTandem16</a><span style="background-color: white; color: #141823; font-family: helvetica, arial, sans-serif; font-size: 14px; line-height: 18px;">! </span><br style="background-color: white; color: #141823; font-family: helvetica, arial, sans-serif; font-size: 14px; line-height: 18px;" /><br style="background-color: white; color: #141823; font-family: helvetica, arial, sans-serif; font-size: 14px; line-height: 18px;" /><span style="background-color: white; color: #141823; font-family: helvetica, arial, sans-serif; font-size: 14px; line-height: 18px;">To help raise </span><a class="_58cn" data-ft="{"tn":"*N","type":104}" href="https://www.facebook.com/hashtag/multiplemyeloma" style="background-color: white; color: #3b5998; cursor: pointer; font-family: helvetica, arial, sans-serif; font-size: 14px; line-height: 18px; text-decoration: none;">#MultipleMyeloma</a><span style="background-color: white; color: #141823; font-family: helvetica, arial, sans-serif; font-size: 14px; line-height: 18px;"> awareness among bone and marrow transplant specialist members of the Center for International Bone & Marrow Transplant Research (CIBMTR) and the American Society of Blood & Marrow Transplant (ASBMT), Sanofi Genzyme will raise recognition for the Multiple Myeloma Community at the upcoming #BMTTandem16 Annual Meeting in Ho</span><span class="text_exposed_show" style="background-color: white; color: #141823; display: inline; font-family: helvetica, arial, sans-serif; font-size: 14px; line-height: 18px;">nolulu, Hawaii, February 18th through February 22nd.<br /><br />Sanofi Genzyme will make a $10.00 donation to CIBMTR and ASBMT for every 10 Tweets and Retweets which include the Hashtags <a class="_58cn" data-ft="{"tn":"*N","type":104}" href="https://www.facebook.com/hashtag/imambo4myeloma" style="color: #3b5998; cursor: pointer; text-decoration: none;">#IMambo4Myeloma</a> and #BMTTandem16, starting NOW through February 23rd.. So please start Tweeting and be sure to include the hashtags #IMambo4Myeloma and #BMTTandem16 in each of your tweets and RTs. Follow <a data-hovercard="/ajax/hovercard/page.php?id=1486770444952385&extragetparams=%7B%22directed_target_id%22%3A0%7D" href="https://www.facebook.com/SanofiGenzyme/" style="color: #3b5998; cursor: pointer; text-decoration: none;">Sanofi Genzyme</a> on Twitter @SanofiGenzyme<br /><br />Our <a class="_58cn" data-ft="{"tn":"*N","type":104}" href="https://www.facebook.com/hashtag/myeloma" style="color: #3b5998; cursor: pointer; text-decoration: none;">#myeloma</a> awareness initiative continues to BUILD a bridge for raising funds!<br /><br />Sanofi Genzyme developed Isatuximab (SAR 650984) which is another anti-CD38 antibody that has shown single-agent activity in Phase I testing among heavily pre-treated myeloma patients.<br /><br />There is NO limit to the amount of times you can tweet and retweet this photo and the #IMambo4Myeloma <a class="_58cn" data-ft="{"tn":"*N","type":104}" href="https://www.facebook.com/hashtag/mbttandem16" style="color: #3b5998; cursor: pointer; text-decoration: none;">#MBTTandem16</a> Hashtags! Please HELP !!</span><br />
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The Myeloma Fighterhttp://www.blogger.com/profile/13967193310174306702noreply@blogger.com0tag:blogger.com,1999:blog-7811274701009089345.post-44623007201103235472016-02-13T22:43:00.000-05:002016-02-13T22:43:22.152-05:00I want to wish to all my fellow Multiple #Myeloma Fighters a Happy Valentines day!<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjU2O406S_YUG1ZUR9-HGwqaOpqhElTnaRDiw-TtoPNp88zIXZBiQ6ualQSDyENsdSl8Y9EftNez02htn0yzviUmHlErr0xFv65DGDae1sYDhm0ND7Y6m6_OokNUl588ipK_HkhbDAP8ZKK/s1600/4.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="225" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjU2O406S_YUG1ZUR9-HGwqaOpqhElTnaRDiw-TtoPNp88zIXZBiQ6ualQSDyENsdSl8Y9EftNez02htn0yzviUmHlErr0xFv65DGDae1sYDhm0ND7Y6m6_OokNUl588ipK_HkhbDAP8ZKK/s400/4.jpg" width="400" /></a></div>
<br />The Myeloma Fighterhttp://www.blogger.com/profile/13967193310174306702noreply@blogger.com0tag:blogger.com,1999:blog-7811274701009089345.post-58441803480219612132016-02-11T05:14:00.001-05:002016-02-11T05:14:19.639-05:00Sean’s Burgundy Thread on Multiple #myeloma!: Give Me A K!<h2 class="title" style="background-color: white; border-bottom-color: rgb(221, 221, 221); border-bottom-style: solid; border-bottom-width: 1px; border-top-color: rgb(221, 221, 221); border-top-style: solid; border-top-width: 3px; color: #333333; font-family: Georgia; font-size: 2.2em; font-stretch: normal; font-weight: normal; letter-spacing: -0.05em; margin: 0px; padding: 5px 0px;">
Sean’s Burgundy Thread: Give Me A K!</h2>
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<span style="float: right; margin: 0px; padding: 0px 20px 0px 0px;">2 Comments</span><span style="margin: 0px; padding: 0px 20px 0px 0px;">By <a href="http://www.myelomabeacon.com/author/sean-murray/" rel="author" style="color: #3c78a7; margin: 0px; outline: none; padding: 0px; text-decoration: none;" title="Posts by Sean Murray">Sean Murray</a></span> <br style="margin: 0px; padding: 0px;" />Published: <span style="margin: 0px; padding: 0px 20px 0px 0px;">Feb 10, 2016 11:49 am</span></div>
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<a href="http://static9.light-kr.com/images/135x135/myeloma-interview/seanmurray2.jpg" style="color: #3c78a7; margin: 0px; outline: none; padding: 0px; text-decoration: none;"><img class="left" height="135px" src="http://static9.light-kr.com/images/135x135/myeloma-interview/seanmurray2.jpg" style="border: 1px solid rgb(204, 204, 204); float: left; margin: 0px 10px 5px 0px; padding: 2px;" width="135px" /></a><div style="margin-bottom: 5px; padding: 0px 0px 10px;">
Although I was extremely busy with several ongoing projects coming to a head, including deciding on a topic for this month’s Myeloma Beacon column, my pals insisted that I quit my ‘incessant bellyaching,’ drop everything, and go out and have some fun.</div>
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Sensitive, level-headed guys, my friends are.</div>
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Having no sympathy for my dilemma, they threatened to excommunicate me from the group if didn’t put away my ‘scribbling’, as they had jokingly called my writing through the years.</div>
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When it became obvious that I wasn’t moved by their hollow threats or their lack of respect, they ramped up their tactics and used one of my weaknesses against me.</div>
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They dared me.</div>
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They dared me to let them help pick a topic for the article. Sensing my resistance to their idea because, frankly, they didn’t know a darn thing about myeloma, they went a step further.</div>
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They triple-dog dared me.</div>
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Great! Everybody knows that you can never back down from a triple-dog dare, even if you have multiple myeloma.</div>
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Still undecided as to the topic for my latest column, and sensing no avenue of escape from those knuckleheads, I threw caution to the wind and accepted their dare. At that point, one of the fellas approached me and softly whispered “Go to The Bag.” Before I knew it, they were all chanting in unison, “Go to The Bag! Go to The Bag!”</div>
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Having given them my word and knowing what they were cryptically telling me to do, I ceremoniously walked over to the Special Closet and withdrew the fake velvet pouch from the tattered cardboard box tucked away on the top shelf. I loosened the draw string, swallowed hard, reached into The Bag, and pulled out a small wooden square upon which was inscribed this single character:</div>
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K</div>
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Oh, the humanity! Of all the possible Scrabble letters that I could have drawn to help with the topic for my column, K was not at the top of the list. M would have been a no-brainer. Or S or T, or just about any of the other letter. Well, maybe not Z or X or Q. I could deal with K.</div>
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At this point, there was no turning back. I dismissed my friends and got down to work armed only with my notebook computer, a deadline for a myeloma article, and the Letter K.</div>
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With an affectionate nod to my other friends who live and play over on Sesame Street, today’s Burgundy Thread column is brought to you by the Letter K.</div>
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K is for KAHLER.</div>
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In your initial mad-dash scramble for information about multiple myeloma, you may have learned that in the late 1870s Otto Kahler, an Austrian doctor and professor of pathology, observed and described the increasingly troubling medical symptoms of a fellow physician.</div>
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Physical changes witnessed over an eight-year period coupled with a postmortem inspection showed conditions similar to those seen in today’s multiple myeloma patients. The mysterious blood-based disease eventually became known as Kahler’s disease.</div>
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That’s Kahler with a K.</div>
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K is for KYPHOPLASTY.</div>
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Ah, kyphoplasty! The word sort of just trips off of the tongue, doesn’t it? Okay, maybe not. While kyphoplasty is largely unfamiliar to the general public, it has become one of my very favorite things.</div>
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Back in 2008, a severe backache led me to seek medical attention and in short order I was diagnosed with multiple myeloma. The worst of the pain was a result of several vertebral compression fractures and collapses, which left me unable to stand or sit for very long, or to rest in a prone position. I had to sleep fitfully in an easy chair. Even with large doses of potent medication, the pain was almost unbearable.</div>
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It was also distressing to lie on the tables for bone marrow biopsies, PET/CT scans, and MRIs – not because of a fear of the procedures, but because of the intense pain of lying down on my back, side, or stomach.</div>
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Thankfully, an interventional radiologist came to the rescue. He and his team performed three successful kyphoplasties.</div>
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In very simple terms, a kyphoplasty is a surgical procedure during which a catheter delivers a balloon to the fracture site, the balloon is then inflated to shore up the damaged bone into as close to the original position as is possible, and then a special type of cement or epoxy is inserted into the area. When the cement hardens, it provides greater stability to the damaged vertebrae.</div>
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In my case, three kyphoplasties helped to greatly diminish my back pain. I was able to walk and stand and to say adios to my recliner. For the first time in many months, I was also able to stretch out on my comfortable pillow-top bed like a normal human being. To me, kyphoplasty was a miracle.</div>
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K is for KYTRIL.</div>
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While undergoing the bombardment of aggressive chemotherapy, I was given an anti-emetic drug called Kytril (granisetron) to help alleviate the nausea and vomiting associated with the harsh treatment. It worked wonders. Kudos, Kytril!</div>
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K is for vitamin K.</div>
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Vitamin K, primarily found in foods such as broccoli, spinach, various types of lettuce, and other green leafy vegetables, is used by the liver to help produce certain proteins that aid in the normal blood clotting process.</div>
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After my first autologous stem cell transplant, I developed life-threatening blood clots in my legs, which had also traveled to my lungs. They were caused by some myeloma medications that I was taking. I was hospitalized and a permanent filter was placed into my inferior vena cava, the large vein carrying deoxygenated blood from my lower body.</div>
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Although the filter is designed to prevent blood clots from traveling up to my heart and lungs, it poses a blood clot risk itself because it is a foreign body.</div>
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To combat potential clots, I began self-injecting the anticoagulant Lovenox (enoxaparin) into my stomach area every day. When I entered the maintenance phase of myeloma treatment, I switched from Lovenox to Coumadin (warfarin), another anticoagulant, which is delivered in pill form.</div>
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Yay pills, boo stomach shots.</div>
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Here’s the rub. Coumadin disturbs the production of certain clotting proteins that depend on vitamin K to work effectively. As a result, clotting occurs at a much slower rate with unwanted bleeding possible when blood vessels are damaged.</div>
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I have learned that it is important for me to work closely with my doctors to maintain the proper balance of vitamin K in my diet and Coumadin in my body. Because I take anti-clotting medications, it's necessary that I have monthly blood tests that measure my international normalized ratio (INR) to ensure that my blood coagulation levels are acceptable.</div>
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Before I undergo a bone biopsy or a bone marrow aspiration, I have to stop taking Coumadin for a few days to get my blood viscosity to appropriate levels to prevent dangerously excessive bleeding during the procedures.</div>
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Of the 24 bone biopsies and marrow aspirations I’ve had over the last several years, I’ve had to postpone the procedures a couple of times because my INR levels were too high. How was it remedied? I was instructed to eat a large leafy green salad for lunch and to come back a few hours later to give the biopsy another shot. It worked every time.</div>
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Space doesn’t allow me to write about some other important myeloma-related K words, but you might be familiar with them. They include kappa light chains; karyotyping of our chromosomes; Kyprolis (carfilzomib), a promising proteasome inhibitor; K, the symbol for potassium – a deficiency of which I had to seek treatment; and, of course, we can’t forget our about our kidneys. There are probably a lot more K words related to myeloma out there.</div>
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I guess that K wasn’t such an unlucky draw for this month’s column after all, but next time I have to write one I’m not going to tell my friends.</div>
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As they say, Keep on Keeping On out there in Myelomaville!</div>
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Sean Murray is a multiple #myeloma patient and columnist at The Myeloma Beacon. You can view a list of his columns <a href="http://www.myelomabeacon.com/author/sean-murray/" style="color: #3c78a7; margin: 0px; outline: none; padding: 0px; text-decoration: none;" title="Sean Murray">here</a>.</div>
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If you are interested in writing a regular column to be published by The Myeloma Beacon, please contact the Beacon team at <a href="mailto:info@myelomabeacon.com" style="color: #3c78a7; margin: 0px; outline: none; padding: 0px; text-decoration: none;">info@myelomabeacon.com</a><span style="margin: 0px; padding: 0px;"></span>.</div>
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Photo of <a href="http://www.myelomabeacon.com/author/sean-murray/" style="color: #3c78a7; margin: 0px; outline: none; padding: 0px; text-decoration: none;">Sean Murray</a>, monthly columnist at The Myeloma Beacon.</div>
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The Myeloma Fighterhttp://www.blogger.com/profile/13967193310174306702noreply@blogger.com0tag:blogger.com,1999:blog-7811274701009089345.post-86309231448100065282015-11-19T19:46:00.001-05:002015-11-19T19:46:36.032-05:00Personalized drug screening on horizon for multiple myeloma patients<div style="background-color: white; border-bottom-style: none; font-family: Georgia, 'Times New Roman', Times, serif; font-size: 14px; line-height: 1.2; margin-bottom: 10px; padding: 0px;">
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<img src="http://news.wustl.edu/news/PublishingImages/Abdel%20Kareem%20Azab%20and%20Pilar%20de%20la%20Puente%20Garcia_300%20x%20350.jpg" /></div>
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<span style="background-color: #cdcdcd; font-family: 'Lucida Grande', Arial, 'Lucida Sans Unicode', sans-serif; font-size: 11.7px; line-height: 14.04px;"></span><span style="background-color: initial; font-family: 'Lucida Grande', Arial, 'Lucida Sans Unicode', sans-serif; font-size: 11.7px; line-height: 1.2;">Pilar de la </span><span style="background-color: initial; font-family: 'Lucida Grande', Arial, 'Lucida Sans Unicode', sans-serif; font-size: 11.7px; line-height: 1.2;">Puente, PhD </span><span style="font-family: 'Lucida Grande', Arial, 'Lucida Sans Unicode', sans-serif; font-size: 11.7px; line-height: 15.2727px;">(left),</span><span style="background-color: initial; font-family: 'Lucida Grande', Arial, 'Lucida Sans Unicode', sans-serif; font-size: 11.7px; line-height: 1.2;"> </span><span style="background-color: initial; font-family: 'Lucida Grande', Arial, 'Lucida Sans Unicode', sans-serif; font-size: 11.7px; line-height: 1.2;">and Kareem Azab, PhD, </span><span style="background-color: initial; font-family: 'Lucida Grande', Arial, 'Lucida Sans Unicode', sans-serif; font-size: 11.7px; line-height: 1.2;">of Washington University School of Medicine in St. Louis, have developed a screening tool that </span><span style="background-color: initial; font-family: 'Lucida Grande', Arial, 'Lucida Sans Unicode', sans-serif; font-size: 11.7px; line-height: 1.2;">may predict quickly and more accurately the best treatments for individual patients with multiple myeloma. </span><span style="background-color: initial; font-family: 'Lucida Grande', Arial, 'Lucida Sans Unicode', sans-serif; font-size: 11.7px; line-height: 15.2727px;">The 3-D tissue-engineered bone marrow </span><span style="background-color: initial; font-family: 'Lucida Grande', Arial, 'Lucida Sans Unicode', sans-serif; font-size: 11.7px; line-height: 15.2727px;">(3DTEBM)</span><span style="background-color: initial; font-family: 'Lucida Grande', Arial, 'Lucida Sans Unicode', sans-serif; font-size: 11.7px; line-height: 15.2727px;"> cultures pictured we re</span><span style="background-color: initial; font-family: 'Lucida Grande', Arial, 'Lucida Sans Unicode', sans-serif; font-size: 11.7px; line-height: 1.2;"></span><span style="background-color: initial; font-family: 'Lucida Grande', Arial, 'Lucida Sans Unicode', sans-serif; font-size: 11.7px; line-height: 15.2727px;">developed with bone marrow samples to help determine which treatments are most effective.</span></div>
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A personalized method for testing the effectiveness of drugs that treat multiple myeloma may predict quickly and more accurately the best treatments for individual patients with the bone marrow cancer. The process, developed by scientists at <a href="https://medicine.wustl.edu/" style="border-bottom-color: rgb(210, 210, 210); border-bottom-style: dotted; border-bottom-width: 1px; color: #006f51; text-decoration: none;" target="_blank">Washington University School of Medicine</a> in St. Louis, also may aid patients with leukemia or lymphoma.</div>
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The screening method suggests which commonly prescribed multiple myeloma drug, or combination of drugs, a physician should consider first for a particular patient. The test also suggests optimum dosage.</div>
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A study validating the new method will be published in the December issue of the journal Biomaterials and now is available <a href="http://www.sciencedirect.com/science/article/pii/S0142961215007620" style="border-bottom-color: rgb(210, 210, 210); border-bottom-style: dotted; border-bottom-width: 1px; color: #006f51; text-decoration: none;" target="_blank">online</a>.</div>
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The method also is being evaluated in a clinical trial involving patients with multiple myeloma. The results will indicate if the method is more effective than current screening methods.</div>
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“Even before the patient completes all of the MRIs, CT scans and other imaging procedures following diagnosis, we can have a recommendation for which drug and dosage to prescribe,” said <a href="http://radonc.wustl.edu/cancerbiology/azab.html" style="border-bottom-color: rgb(210, 210, 210); border-bottom-style: dotted; border-bottom-width: 1px; color: #006f51; text-decoration: none;" target="_blank">Kareem Azab</a>, PhD, an assistant professor of radiation oncology at the School of Medicine and the <a href="http://www.siteman.wustl.edu/" style="border-bottom-color: rgb(210, 210, 210); border-bottom-style: dotted; border-bottom-width: 1px; color: #006f51; text-decoration: none;" target="_blank">Siteman Cancer Center</a> member who leads the research. “The test results come in three to four days.”</div>
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<span style="background-color: white; font-family: Georgia, 'Times New Roman', Times, serif; font-size: 14px; line-height: 1.2;">Multiple myeloma is a cancer of the infection-fighting plasma cells, part of the immune system found mainly in bone marrow. This year, an estimated 26,850 U.S. residents will be diagnosed with the disease and about 11,240 patients are expected to die, according to the American Cancer Society. Half of multiple myeloma patients diagnosed in the earliest stage of the disease don’t survive beyond about five years after initial treatment because the cancer becomes resistant to treatments.</span></div>
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Treating multiple myeloma is difficult because in 90 percent of cases there is no obvious genetic mutation that can be targeted with treatment. Also, standard drug screening methods don’t adequately re-create the environment surrounding cancer cells growing in a particular patient’s body, making those methods less reliable at predicting effective drug therapies.</div>
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Azab hopes a more personalized approach will improve long-term patient outcomes. The method relies on 3-D tissue-engineered bone marrow (3DTEBM) cultures that Azab and his colleagues developed using myeloma patients’ bone marrow samples. To more closely mimic outside the body what goes on within, scientists take small samples of a patient’s cells – cancerous and benign – and remodel them in the lab. This tumor “microenvironment” includes the cancer cells and other neighboring blood vessels, immune cells and other components whose interaction can help or inhibit the tumor cells’ growth.</div>
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Drugs then are tested on the remodeled patient cells to determine which treatment is likely to be most effective.</div>
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Azab’s method gauges the sensitivity of a patient’s cells to different drugs at any time in the course of the disease. Therefore, as a patient’s multiple myeloma becomes more resistant to particular drugs, continued drug screening could suggest when to change therapies. This could save valuable time, he said.</div>
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“Now we have a drug test that closely replicates what’s going on with a patient at any given moment,” Azab said. “We think this method has a better chance of working than existing options.”</div>
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Azab and his colleagues have launched a company, Cellatrix, in coordination with Washington University’s Office of Technology Management and BioGenerator, a nonprofit organization that helps area bioscience companies form.</div>
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Others have taken notice of the testing method and its potential. Later this year, Cellatrix will begin testing potential therapies on behalf of pharmaceutical companies. Azab’s team also is studying how well the screening method works for patients with leukemia or lymphoma, which are cancers of the blood.</div>
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de la Puente P, Muz B, Gilson RC, Azab F, Luderer M, King J, Achilefu S, Vij R, Azab AK. 3D tissue-engineered bone marrow as a novel model to study pathophysiology and drug resistance in multiple myeloma. Biomaterials. December 2015.</div>
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<a href="http://medicine.wustl.edu/" style="background-color: initial; border-bottom-color: rgb(210, 210, 210); border-bottom-style: dotted; border-bottom-width: 1px; color: #006f51; line-height: 17px; text-decoration: none;" target="_blank">Washington University School of Medicine</a><span style="background-color: initial; line-height: 17px;">’s 2,100 employed and volunteer faculty physicians also are the medical staff of </span><a href="http://www.barnesjewish.org/" style="background-color: initial; border-bottom-color: rgb(210, 210, 210); border-bottom-style: dotted; border-bottom-width: 1px; color: #006f51; line-height: 17px; text-decoration: none;" target="_blank">Barnes-Jewish</a><span style="background-color: initial; line-height: 17px;"> and</span><a href="http://www.stlouischildrens.org/" style="background-color: initial; border-bottom-color: rgb(210, 210, 210); border-bottom-style: dotted; border-bottom-width: 1px; color: #006f51; line-height: 17px; text-decoration: none;" target="_blank">St. Louis Children’s</a><span style="background-color: initial; line-height: 17px;"> hospitals. The School of Medicine is one of the leading medical research, teaching and patient-care institutions in the nation, currently ranked sixth in the nation by U.S. News & World Report. Through its affiliations with Barnes-Jewish and St. Louis Children’s hospitals, the School of Medicine is linked to </span><a href="http://www.bjc.org/" style="background-color: initial; border-bottom-color: rgb(210, 210, 210); border-bottom-style: dotted; border-bottom-width: 1px; color: #006f51; line-height: 17px; text-decoration: none;" target="_blank">BJC HealthCare</a><span style="background-color: initial; line-height: 17px;">.</span></div>
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<span style="background-color: initial; line-height: 17px;"></span><a href="http://www.siteman.wustl.edu/" style="background-color: initial; border-bottom-color: rgb(210, 210, 210); border-bottom-style: dotted; border-bottom-width: 1px; color: #006f51; line-height: 1.2; text-decoration: none;" target="_blank">Siteman Cancer Center</a><span style="background-color: initial; line-height: 1.2;">, ranked among the top cancer treatment centers by U.S. News & World Report, also is one of only a few cancer centers in the U.S. to receive the highest rating of the National Cancer Institute (NCI). Comprising the cancer research, prevention and treatment programs of Barnes-Jewish Hospital and Washington University School of Medicine in St. Louis, Siteman is Missouri’s only NCI-designated Comprehensive Cancer Center and the state’s only member of the National Comprehensive Cancer Network.</span></div>
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<span style="background-color: initial; line-height: 1.2;">Keep Fighting</span></div>
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The Myeloma Fighterhttp://www.blogger.com/profile/13967193310174306702noreply@blogger.com0tag:blogger.com,1999:blog-7811274701009089345.post-55290454618679636192015-11-18T19:05:00.000-05:002015-11-18T19:05:30.879-05:00Using Antibiotics in Myeloma Combos To Kill Myeloma Cells<div style="background-color: white; border: 0px; color: #606569; font-family: 'Open Sans', Arial, sans-serif; font-size: 13px; line-height: 24.141px; margin-bottom: 1.857em; padding: 0px; vertical-align: baseline;">
<strong style="border: 0px; font-family: inherit; margin: 0px; padding: 0px; vertical-align: baseline;">Summary</strong></div>
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<span style="color: #19232d; font-family: 'Roboto Slab', Georgia, serif; font-size: 20px;">Dr. Tomer Mark, MD, Weill Cornell Medical Center via </span><span style="line-height: 24.141px;">Myeloma Crowd Radio</span><span style="color: #19232d; font-family: 'Roboto Slab', Georgia, serif; font-size: 20px; line-height: 24.141px;">:</span></div>
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<strong style="border: 0px; font-family: inherit; margin: 0px; padding: 0px; vertical-align: baseline;">Antibiotics can be used in combination with standard myeloma drugs to increase their myeloma-killing impact. A common antibiotic, clarithromycin (typically used for sinus infections) has been tested in myeloma and has found to help kill myeloma because it reduces inflammation, allowing the </strong><strong style="border: 0px; font-family: inherit; margin: 0px; padding: 0px; vertical-align: baseline;">immune system to do its job to kill harmful cells. Dr. Tomer Mark, MD of the Weill Cornell Medical Center shares his use of Biaxin (clarithromycin) in a combination called “BIRD” – Biaxin, Revlimid and Dexamethasone. He notes that the use of the antibiotic with lenalidomide and dexamethasone can get equally good responses as VRD (Velcade-Rev-Dex) or CyborD (cyclophosphamide-bortezomib-dex). He likes the antibiotic combination option because it can spare patients some up-front chemo toxicity and allows doctors to reserve some active myeloma treatments for later, when patients relapse. It is a common and inexpensive drug to add to the mix and Dr. Mark </strong><strong style="border: 0px; font-family: inherit; margin: 0px; padding: 0px; vertical-align: baseline;">is now testing the BIRD combination with carfilzomib and in other combinations after seeing positive results from a previous study. Dr. Mark shares how this drug will continue to be tested with other new combinations and describes his upcoming clinical trials to further test this easy option.</strong></div>
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<strong style="border: 0px; font-family: inherit; margin: 0px; padding: 0px; vertical-align: baseline;">Clinical Trials Discussed in This Show</strong></div>
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<strong style="border: 0px; font-family: inherit; line-height: 24.141px; margin: 0px; padding: 0px; vertical-align: baseline;">Full Transcript</strong></div>
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<strong style="border: 0px; font-family: inherit; margin: 0px; padding: 0px; vertical-align: baseline;">Jenny: </strong>Welcome to today’s episode of Myeloma Crowd Radio, a show that connects patients with myeloma researchers. I’m your host, Jenny Ahlstrom.</div>
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We’d like to thank today’s episode sponsor, Amgen, for their support of Myeloma Crowd Radio and all they do for multiple myeloma patients. And before we get started, I’d like to tell you about our Myeloma Crowd Research Initiative, or <a href="http://www.myelomacrowd.org/thank-you-takeda-oncology-mcri-12-day-challenge/" style="border: 0px; color: #f0ae39; font-family: inherit; margin: 0px; padding: 0px; text-decoration: none; transition: all 0.4s ease-in-out; vertical-align: baseline;">MCRI 12-Day Challenge that we are wrapping up this week.</a></div>
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The MCRI is the first completely patient-driven initiative seeking for solutions for high-risk myeloma and ultimately, all myeloma. We believe that patients can and should help accelerate cure for themselves so with input from six leading myeloma doctors and five highly-educated myeloma patients and a very thorough review process, we’ve selected two critical projects that need our financial support. These projects are immunotherapies using T-cells or your own immune system cells to fight myeloma.</div>
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We’re now raising funds for these two projects. But in addition to donations that you can make, over the last two weeks we’ve gained the support of a corporate sponsor to help fund this research. We identified 12 challenges that patients could take to educate themselves and others about myeloma and to spread awareness. For each of the challenges taken and shared, $1 is donated by the sponsor. So today we will be posting all 12 challenges and if you haven’t had a chance to complete them, please take a look later today and do them. They are simple actions you could take that could actually save lives.</div>
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The 12-Day Challenge has been incredibly fun to see thousands of you getting involved to promote myeloma awareness that could help patients get diagnosed earlier and get better treatments. And our last challenge was probably the most fun of all: Devon Harris, the founding member of the Jamaican Bobsled Team, making a video to tell us how we can push for better outcomes for myeloma in the African-American and global black communities.</div>
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So we will be announcing the winners of our prizes from our prize locker later this week which will include a free myeloma genetics test from Signals Genetics and two free case reviews by myeloma doctors as well as other prizes.</div>
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Now the choices for myeloma patients are expanding greatly and Dr. Tomer Mark joins us today to discuss some new combinations and some immunotherapies as we head into the biggest hematology conference in the world next month. And I’ve had many patients comment about how much they love him as a doctor when they saw this upcoming show.</div>
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So Dr. Mark, thank you so much for all you do for myeloma patients and welcome to the show.</div>
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<strong style="border: 0px; font-family: inherit; margin: 0px; padding: 0px; vertical-align: baseline;">Dr. Mark: </strong>Thank you for having me.</div>
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<strong style="border: 0px; font-family: inherit; margin: 0px; padding: 0px; vertical-align: baseline;">Jenny: </strong>So let me give a small introduction for you as we get started.</div>
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Dr. Tomer Mark is Associate Professor of Medicine and Associate of Attending of Clinical Medicine as well as Associate Director of the Center for Multiple Myeloma at the Weill Cornell School of Medicine and New York Presbyterian Hospital in New York City. He won the ASH Clinical Research Training Institute Award and was honored as the Morton Coleman Assistant Professorship in Multiple Myeloma. He reviews for journals including <em style="border: 0px; font-family: inherit; margin: 0px; padding: 0px; vertical-align: baseline;">Transplantation, Clinical Lymphoma and Myeloma, Expert Opinion on Biological Therapy, The British Journal of Hematology, </em>and<em style="border: 0px; font-family: inherit; margin: 0px; padding: 0px; vertical-align: baseline;"> Leukemia and Lymphoma</em> just to name a few. He developed the outpatient stem cell transplant program at Weill Cornell Medical Center and is also the Director of the Myeloma Autologous Stem Cell Transplant Service.</div>
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So Dr. Mark, welcome.</div>
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<strong style="border: 0px; font-family: inherit; margin: 0px; padding: 0px; vertical-align: baseline;">Dr. Mark: </strong>Thank you.</div>
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<strong style="border: 0px; font-family: inherit; margin: 0px; padding: 0px; vertical-align: baseline;">Jenny: </strong>So questions for you. I guess we will start with kind of the newly-diagnosed setting. I know that in medical research, it’s typical to start a brand-new therapy or treatment in the relapsed setting versus the newly-diagnosed setting. Maybe you can first describe the logic that goes behind that.</div>
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<strong style="border: 0px; font-family: inherit; margin: 0px; padding: 0px; vertical-align: baseline;">Dr. Mark: </strong>Sure. The reason why we start newer drugs in relapsed to refractory setting is because of our lack of experience. For one thing, the newer drugs are developed in a laboratory setting typically with cell lines or primary cells that are refractory to the older drugs. And so they’re sort of designed to overcome resistance to older drugs.</div>
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But the more practical reason, again, is lack of experience where you have a drug like bortezomib that’s been used in more than 100,000 people, when you have a brand-new drug you’re not exactly sure what the side effect profile is, whether it could be toxic or whether it could not work at all.</div>
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And so when you’re starting a newly-diagnosed patient with multiple myeloma you really don’t want to make mistakes. There’s not a lot of wiggle room and you want to start with something that you know will work. Whereas for relapsed/refractory patients, although it is still very important that that treatment you use works, very often there are limited options. And so your hand is sort of forced to try one of these newer drugs.</div>
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<strong style="border: 0px; font-family: inherit; margin: 0px; padding: 0px; vertical-align: baseline;">Jenny:</strong> That makes a lot of sense because there are a lot of options for the newly-diagnosed patient. So maybe you want to address how trials are constructed for newly-diagnosed patients then because you have a trial that we’re going to talk about in a minute.</div>
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<strong style="border: 0px; font-family: inherit; margin: 0px; padding: 0px; vertical-align: baseline;">Dr. Mark: </strong>Sure. For newly-diagnosed patients, I would say about ten years ago, the focus was getting a response and a deep response. Now that we have a whole bunch of drugs that people respond to well off the bat, now the focus is two-fold, number 1 is tolerability. So having that same level of effectiveness yet increasing somebody’s quality of life. And the second is how deep can you go? Can you get people into a minimal residual disease-negative state, wipe out every site of myeloma that they have without using a transplant? And we’re getting there right now. Whereas ten years ago it was treat and then transplant, now it’s treat, test for minimal residual disease, and question mark transplant.</div>
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<strong style="border: 0px; font-family: inherit; margin: 0px; padding: 0px; vertical-align: baseline;">Jenny:</strong> Okay, fascinating. It’s hard because sometimes you see papers come out that say transplant is still the most effective but then you think compared to what? Because they’re not doing a head-to-head comparison and sometimes the delay in time to study something is extended and then new things are coming out in the meantime.</div>
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I know last year you had a study that was carfilzomib and then the BIRD combination. Maybe you can describe what that was and how you came to create that? But I’m curious to know how you determine which study that you’ll choose at your facility, because you only have a limited amount of time and energy and resources, I would think. So how do you pick the very best options for your patients as part of that?</div>
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<strong style="border: 0px; font-family: inherit; margin: 0px; padding: 0px; vertical-align: baseline;">Dr. Mark: </strong>The way we try to set up trials for newly-diagnosed patients at our institution, it depends on the phase of the study. If it’s a phase II trial like the Car-BIRD trial that we’ll talk about in a little while, it’s trying to get more active agents that are typically used in the relapsed refractory setting more towards frontline.</div>
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And the rationale for Car-BIRD was based off on an earlier study by Andrzej Jakubowiak at University of Michigan, now at University of Chicago, where he combined carfilzomib, lenalidomide, and dexamethasone as upfront treatment for his patients and had absolutely fantastic response rates. We believe that the very good partial remission rate or better on his study was 100% and the complete remission rate was close to 70%.</div>
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And so that was the primary reason we chose to try and bring Kyprolis in the upfront setting; it’s only approved for relapsed or refractory myeloma at this time. So it’s trying to give our patients sort of that early access option.</div>
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When it comes to phase III studies, it typically comparing standard of care to something that you think may be a little bit better. And so at Cornell we’re sort of famous for using clarithromycin in our regimens and we can talk about that more a little later too. And clarithromycin’s actually been adopted by many myeloma experts around the country, but there’s been no head-to-head study.</div>
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And so our next upfront trial is a randomized phase III of BIRD which is clarithromycin, lenalidomide, and dexamethasone versus lenalidomide and dexamethasone to truly show that adding the clarithromycin enhances the len/dex activity.</div>
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<strong style="border: 0px; font-family: inherit; margin: 0px; padding: 0px; vertical-align: baseline;">Jenny:</strong> Okay, let’s talk about that for a minute. Why did you choose that particular drug because I don’t hear it very often and what does it do to kill myeloma and why are you using it in that combination?</div>
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<strong style="border: 0px; font-family: inherit; margin: 0px; padding: 0px; vertical-align: baseline;">Dr. Mark: </strong>That’s probably the most common question I get. It happened sort of by providence. The first report of using clarithromycin in multiple myeloma comes from an ASH meeting long ago where Brian Durie talked about using Clarithromycin in patients with multiple myeloma that have a cyclin D1 translocation, that’s the 11;14 translocation. And he started using clarithromycin because he had heard that clarithromycin had activity in mantle cell lymphoma which also has that cyclin D1 translocation.</div>
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Now it turns out that that was based on a sort of a false assumption but he demonstrated some activity for clarithromycin. That led to another study done in New York City by Morton Coleman here of the BLT-D regimen which was Biaxin, that’s the trade name for clarithromycin in combination with thalidomide and dexamethasone, and that had really good response rates, in the high 90s. So there was sort of something to it.</div>
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But then other researchers used clarithromycin as a single agent in myeloma and showed no activity whatsoever and so this sort of fell by the wayside. It was resurrected again at Cornell in the BIRD study which was clarithromycin, lenalidomide and dexamethasone. And in that study there were around 70 patients or so and there is an overall response rate of 90%, a very good partial remission rate or higher of 70% and a complete remission rate of 40%. If you compare those numbers they are equivalent to the other popular regimens of VRD which is bortezomib len/dex, and CyBorD which is cyclophosphamide, bortezomib, dex.</div>
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And given that they all seem equal on paper, that tells you that the Clarithromycin seems to be doing something. For one thing you’re sparing people the extra chemotherapy of cyclophosphamide and you’re sparing people using all the active agents upfront in myeloma. One of the problems that we’ve had before is if you start somebody on VRD chemotherapy and they relapse, what are you going to do? You’re going to later give them carfilzomib or pomalidomide. But if you start somebody on BIRD, when they relapse you can give them Velcade and vice versa if you start somebody on CyBorD, when they relapse you can give them BIRD and then you have an entirely different active combination.</div>
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Now even with that BIRD data and that publication in <em style="border: 0px; font-family: inherit; margin: 0px; padding: 0px; vertical-align: baseline;">Blood</em>, people still did not believe it. And so we sent our data to the Mayo Group and we had no hand in this. They took our data and they compared it to their experience with lenalidomide and dexamethasone. And in their review, our complete remission rate for BIRD was twice as high as far as len/dex and our time to progression was twice as high. Our time to progression was around 50 months for BIRD versus 25 months for len/dex.</div>
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And again, that’s just because you add a simple antibiotic treatment. I think the reason you don’t hear more about this is that nobody makes money from clarithromycin. Generic, been around for years, right?</div>
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<strong style="border: 0px; font-family: inherit; margin: 0px; padding: 0px; vertical-align: baseline;">Jenny:</strong> And what is it? Is it an antibiotic?</div>
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<strong style="border: 0px; font-family: inherit; margin: 0px; padding: 0px; vertical-align: baseline;">Dr. Mark: </strong>Yes, it’s an antibiotic. It’s typically used to treat sinus infections. You may ask, how could that possibly work in multiple myeloma? There are actually several reasons. Number 1 is antibiotics, especially the macrolide antibiotics like clarithromycin are anti-inflammatory. And so it’s been shown that if you give kids with frequent asthma attacks clarithromycin, the severity and frequency of their attacks go down. If somebody is admitted to the hospital with a COPD exacerbation which is purely inflammatory in nature and you give them antibiotics, they get over their COPD exacerbation quicker.</div>
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And when I did my internal medicine residency in Boston, the head of our department was an infectious disease doctor. He would tell us that people would come in to your clinic with clearly a viral upper respiratory tract infection and they would beg you for a Z-Pak — azithromycin. He said the reason they beg you for a Z-Pak is it works. Even if you have a viral infection, it activates your T-cells and helps them to fight that infection and inflammation. And if you think about the way lenalidomide works, it works in a very similar way — it turns on T-cells and NK cells to fight myeloma.</div>
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And so now that there is some more data about that there are other groups that have looked into the molecular mechanisms of clarithromycin in multiple myeloma and there is now laboratory data supporting clarithromycin turning off inflammation in people. In addition to that mechanism of action, clarithromycin also competes with dexamethasone for metabolism in the liver. So dexamethasone has a relatively short half-life, it’s all out of you in about 24 hours and that’s why we used to give pulse dex in the olden days, 40mg a day for four days, and that is a very tough thing for people to take because they don’t sleep for four days.</div>
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And what we’ve shown with clarithromycin is you get a very similar effect of having a prolonged sort of dexamethasone effect in your body because of decreased clearance in the liver but you don’t get the side effects; people don’t get the insomnia. And the side effects are very close to what you would have with taking dexamethasone only once a week.</div>
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<strong style="border: 0px; font-family: inherit; margin: 0px; padding: 0px; vertical-align: baseline;">Jenny:</strong> So you’re saying you’re using it alone or using it with dex?</div>
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<strong style="border: 0px; font-family: inherit; margin: 0px; padding: 0px; vertical-align: baseline;">Dr. Mark: </strong>Using it with dex together. So the BIRD is Biaxin, lenalidomide and dex.</div>
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<strong style="border: 0px; font-family: inherit; margin: 0px; padding: 0px; vertical-align: baseline;">Jenny:</strong> Oh, I see.</div>
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<strong style="border: 0px; font-family: inherit; margin: 0px; padding: 0px; vertical-align: baseline;">Dr. Mark: </strong>And so essentially what you’re getting is instead of a quick on-and-off for your dexamethasone, you’re getting a smooth plateau that lasts for several days and it’s probably more active against the multiple myeloma.</div>
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The third sort of mechanism is that research has shown that in the presence of clarithromycin, lymphocytes are more sensitive to killing. So essentially it decreases the lymphocyte defense from cytotoxic events — so plasma cells are technically lymphocytes — and so that may be another mechanism of action for that.</div>
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So circling back to our Car-BIRD study, given the Jakubowiak data showing that CRD is highly active and probably more active than VRD, CyBorD, we decided to try it with BIRD since we know that that works just as well as VRD and better than RD and separate them out in time so that we could potentially avoid toxicities. So we give the carfilzomib and the dexamethasone until maximum response at which point we switch over to BIRD which is an entirely oral regimen. We use that to max response at which point the patient then goes directly to lenalidomide maintenance.</div>
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At some point along the way we do collect stem cells and store them but these patients don’t go up for upfront transplant. And so the hope is getting it just as good as CRD without the toxicity. And Morton Coleman is still involved in this project and he calls it the one-two punch. You knock out the carfilzomib-sensitive cells right in the beginning and then you mop up with the BIRD for anybody that was resistant to the carfilzomib.</div>
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<strong style="border: 0px; font-family: inherit; margin: 0px; padding: 0px; vertical-align: baseline;">Jenny:</strong> That’s a great approach. I have a question because you’re a director of the stem cell transplant unit. So how do you look at the comparisons between starting somebody out with early transplant versus something like this? Because transplant is not an easy process but patients are willing to do it if it’s going to be the ultimate in effectivity.</div>
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<strong style="border: 0px; font-family: inherit; margin: 0px; padding: 0px; vertical-align: baseline;">Dr. Mark: </strong>Sure. My view is that transplant is a tool, it’s not a destination. And if you look at academic centers versus private hospitals, you’ll find that the private hospitals are the ones that are promoting transplanting everybody — if not one then two transplants. And so you got to figure that there’s a little bit of dollar bias going on over here because transplants are highly-profitable for hospitals. If you look at academic centers like us, Dana-Farber, Mayo, transplant is usually reserved for patients in relapse or patients that otherwise don’t tolerate chemotherapy.</div>
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So although I am director of the transplant for myeloma program over here, I have to say that we do not transplant the majority of our patients — at least, not upfront. And the reason for that is that all myelomas are different and I think it’s wrong to treat every single patient with myeloma exactly the same. I think that the treatment has to be tailored and customized to the patient. And the right way to use transplant is either to treat an early relapse so you get somebody right back into complete remission, or to treat that patient who cannot achieve a complete remission with induction chemotherapy. And our agents are so good right now; I have to say that here at Cornell almost 70% of our patients get into complete response with just chemotherapy alone.</div>
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And so if your patient’s in complete response, if they’re taking chemotherapy and the plan is to give continuous chemotherapy for the long term, I can’t tell if they’re going to need a transplant a month after they finish the primary induction or 5, 6 years afterwards. And so I do sort of leave it up to the patient a little bit, we talk about the pros and cons of transplant, and at the end of the day, I do believe that people who get a transplant tend to live longer than people who do not. The timing doesn’t matter at all. I think that your transplant benefit in terms of years added to life would be the same whether you do it right away or you wait a little while. And I say the exact same thing to patients.</div>
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There has been a study in the past looking at early versus delayed transplant that showed no difference in overall survival. If there is a benefit to doing early transplant, I would say it would be for quality of life. If somebody’s having a really tough time with chemotherapy, a transplant gives them an opportunity for getting a deep response and then going on to maintenance which is usually much more tolerable than primary chemotherapy. You get to drop the steroid which is usually the most evil thing of the bunch.</div>
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<strong style="border: 0px; font-family: inherit; margin: 0px; padding: 0px; vertical-align: baseline;">Jenny:</strong> Yes, everyone hates that.</div>
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<strong style="border: 0px; font-family: inherit; margin: 0px; padding: 0px; vertical-align: baseline;">Dr. Mark: </strong>Right. If somebody is taking BIRD chemotherapy and they’re in complete response and they feel good, they’re going to work, then I’ll harvest and store and then we’ll transplant when it’s convenient for the patient.</div>
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<strong style="border: 0px; font-family: inherit; margin: 0px; padding: 0px; vertical-align: baseline;">Jenny:</strong> And you’re saying that using the Car-BIRD is also giving people lower side effects using the dex anyway, right? Is that what you’re saying?</div>
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<strong style="border: 0px; font-family: inherit; margin: 0px; padding: 0px; vertical-align: baseline;">Dr. Mark: </strong>So there’s Car-dex and then BIRD and then len-maintenance. And so I would have to say there is a lower rate of side effects because the combination is less intense and people like it because it’s entirely oral. Once people are on the BIRD and the len-maintenance they come here once a month. So thinking about going to see your myeloma physician once a month is great, you know?</div>
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<strong style="border: 0px; font-family: inherit; margin: 0px; padding: 0px; vertical-align: baseline;">Jenny:</strong> Yes, right.</div>
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<strong style="border: 0px; font-family: inherit; margin: 0px; padding: 0px; vertical-align: baseline;">Dr. Mark: </strong>And working in the upper east side of Manhattan, these people generally are very busy, active, going to work, don’t want to see the doctor, and not really preoccupied with their medical conditions. And so having a long-term chemotherapy plan that people tolerate and can live with is ideal.</div>
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I would think that in other areas of the country where people may not be as “busy” or as sort of work-focused, where they can afford to go to the doctor a little bit more often, other regimens would be just as good.</div>
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<strong style="border: 0px; font-family: inherit; margin: 0px; padding: 0px; vertical-align: baseline;">Jenny:</strong> Well, but still no one likes sitting in the infusion room for hours, no one enjoys that really.</div>
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<strong style="border: 0px; font-family: inherit; margin: 0px; padding: 0px; vertical-align: baseline;">Dr. Mark: </strong>Sure.</div>
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<strong style="border: 0px; font-family: inherit; margin: 0px; padding: 0px; vertical-align: baseline;">Jenny:</strong> So yeah, that’s terrific. Okay. So you presented this paper last year at ASH. Can you go over all the results — maybe you just did that, but if there’s anything you like to say about that? And then if that study is complete then where are you going next with this combination?</div>
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<strong style="border: 0px; font-family: inherit; margin: 0px; padding: 0px; vertical-align: baseline;">Dr. Mark: </strong>Sure. So at last year’s ASH, we presented the Car-BIRD data in total and the Car-BIRD data looked generally pretty strong. So in terms of the results over here, for just the Car-dex sort of induction portion of it, the VGPR and better rate was around 84%. And then when you add the BIRD consolidation to it, an additional 11% of patients respond VGPR or better. So at the end of the day we have a 95% VGPR and better rate which is —</div>
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<strong style="border: 0px; font-family: inherit; margin: 0px; padding: 0px; vertical-align: baseline;">Jenny:</strong> And so this is very good partial response (VGPR), right?</div>
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<strong style="border: 0px; font-family: inherit; margin: 0px; padding: 0px; vertical-align: baseline;">Dr. Mark: </strong>That’s correct. So that’s pretty much the same as the CRD combination altogether that Jakubowiak had but again, we separated this in time.</div>
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In general, it was very well tolerated and the doses of carfilzomib that we used went all the way up to 56mg/m². It’s been shown that carfilzomib, there is a dose response relationship and that the more you use the deeper the response you get. People are worried about cardiac toxicity and renal failure with carfilzomib but we treated more than 70 patients and I have to say there is probably only one or two cardiac events in people who had pre-existing heart disease and advanced age. The renal failures that we saw were also not that many, five or less, and all of them but one were reversible. The one where it wasn’t reversible, we weren’t sure whether that renal failure was actually due to progressive myeloma or not.</div>
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Now on our Car-BIRD phase, people have been on lenalidomide maintenance for two years plus. We have somebody going into the third year of lenalidomide maintenance. And people are doing really well at just taking one lenalidomide at 10mg a day.</div>
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<strong style="border: 0px; font-family: inherit; margin: 0px; padding: 0px; vertical-align: baseline;">Jenny: </strong>Okay. And do you have an open study now?</div>
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<strong style="border: 0px; font-family: inherit; margin: 0px; padding: 0px; vertical-align: baseline;">Dr. Mark: </strong>So Car-BIRD just wrapped up. We’re about to open our phase III BIRD versus RD study and that is actually an international study. We’re the primary site in the United States but Dr. Mateos is opening it up with PETHAMA in Spain and they’re a very active group as well. And we hope to get some sub-sites in the United States as well since this is going to be a large study.</div>
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In addition to that, we’re about to open up one of the industry-sponsored trials of daratumumab in combination with lenalidomide and dexamethasone as upfront therapy. We’re working on another sort of investigator-initiated protocol of using the next Takeda drug which is ixazomib and adding that to BIRD as upfront therapy. That would be another entirely oral regimen combining a proteasome inhibitor, IMiD, and clarithromycin, our favorite drug.</div>
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<strong style="border: 0px; font-family: inherit; margin: 0px; padding: 0px; vertical-align: baseline;">Jenny: </strong>Yes, so that will be the first oral proteasome inhibitor, right?</div>
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<strong style="border: 0px; font-family: inherit; margin: 0px; padding: 0px; vertical-align: baseline;">Dr. Mark: </strong>Yes, that’s right.</div>
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<strong style="border: 0px; font-family: inherit; margin: 0px; padding: 0px; vertical-align: baseline;">Jenny: </strong>Yes. And these three studies — the phase III, the daratumumab, and the ixazomib with the BIRD — those are all for newly-diagnosed patients as upfront therapy, right?</div>
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<strong style="border: 0px; font-family: inherit; margin: 0px; padding: 0px; vertical-align: baseline;">Dr. Mark: </strong>Those are all newly-diagnosed, yes.</div>
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<strong style="border: 0px; font-family: inherit; margin: 0px; padding: 0px; vertical-align: baseline;">Jenny: </strong>Okay. Well, it’s sort of hard to find studies for newly-diagnosed patients that I’ve found so these are great options.</div>
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<strong style="border: 0px; font-family: inherit; margin: 0px; padding: 0px; vertical-align: baseline;">Dr. Mark: </strong>Yes. And it’s also tough to get patients for newly-diagnosed studies because VRD is so easy to prescribe; you just get it with your local oncologist. At a myeloma center, we generally see people when they’re in trouble, when the local oncologist can’t take care of them anymore.</div>
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<strong style="border: 0px; font-family: inherit; margin: 0px; padding: 0px; vertical-align: baseline;">Jenny: </strong>Well, I think that’s very common. I think it’s tough to find those patients because they are going to their local oncologist or even to their local doctor and they say okay, let’s start you on treatment right away which is…(the “standard”) My story is many people that I know, many patients that I know, their same story, you really have to say, “Well, wait a second, before I start this, I want to make sure it’s my optimal outcome.”</div>
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So I have a lot of questions for you about the clarithromycin and that, but maybe we want to insert some of what we talked about earlier. Earlier I was sort of asking you how you picked. I mean with all these different options, so you just named three, for newly-diagnosed patients and there are a lot more for the relapsed/refractory patients, how does a myeloma patient make those decisions with their doctor to find the best ultimate outcome especially as we move to personalized medicine and treating patients more individually, this is not an easy thing.</div>
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<strong style="border: 0px; font-family: inherit; margin: 0px; padding: 0px; vertical-align: baseline;">Dr. Mark: </strong>No, not at all. I find it that the patients are very confused, that it’s a really difficult decision. The patient actually place a lot of burden on themselves to sort of come up with the answer and given that there are so many options out there, that actually makes it more confusing.</div>
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I find that we really need to guide the patients because there are so many options and there are so many things that you can read about online and everybody has an opinion. But without this experience, picking an option is really hard. And some patients they want to direct their own care from the get-go but I find that equivalent to me knocking on the cockpit of an airplane saying “Okay, I want to take over.”</div>
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<strong style="border: 0px; font-family: inherit; margin: 0px; padding: 0px; vertical-align: baseline;">Jenny: </strong>Yes, the experience isn’t there to be sure.</div>
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<strong style="border: 0px; font-family: inherit; margin: 0px; padding: 0px; vertical-align: baseline;">Dr. Mark: </strong>And a lot of the reports out there are biased. So if you for instance take a look at the mSMART criteria for Mayo Group where they risk-stratify patients based on cytogenetics and other features into high or low risk and then say high-risk patients get VRD, medium-risk patients get CyBorD — that’s based on zero data. That’s completely an opinion and people don’t realize that.</div>
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When you compare VRD to CyBorD to BIRD, they are all exactly equivalent in terms of efficacy but they all carry different side effects. And so if I were to take care of somebody who plays violin for the Philharmonic, I may want to choose an agent that does not have any peripheral neuropathy. If I had somebody who had a lot of vascular disease, a history of stroke for instance, then I would shy away from using a lenalidomide-containing regimen. But at the end of the day and we say this amongst each other, all patients get all agents anyway and so people wind up going through a succession of different things.</div>
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So the one sort of thing coming out that may be better is of course the Kyprolis®-lenalidomide-dexamethasone combinations that have shown deeper responses, have shown elimination of minimal residual disease as upfront therapy. And as we are getting more into MRD testing, we now know that the deeper you go, the better you do. A group in the United Kingdom just showed that for every log reduction in amount of plasma cells remaining in the marrow, an extra year of life is gained. And so certainly in our practice, getting to that minimal residual disease negative state for every patient is the goal.</div>
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<strong style="border: 0px; font-family: inherit; margin: 0px; padding: 0px; vertical-align: baseline;">Jenny: </strong>And you’re testing for MRD status when you test? Is that becoming more regular in everyone’s practice, would you say?</div>
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<strong style="border: 0px; font-family: inherit; margin: 0px; padding: 0px; vertical-align: baseline;">Dr. Mark: </strong>I think among academic practices it’s certainly caught on. It’s yet to achieve sort of prime-time status for several reasons. Number 1, myeloma traditionally has not been very good on flow cytometry studies because as hard as it is to kill plasma cells in patients, it’s harder to keep them alive outside of patients. And so as soon as you take that aspirate out of the patient, the cells start dying. And so unless you have a flow cytometry machine in your institution or can get it processed very quickly, the test becomes meaningless.</div>
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And so at academic centers, we have a flow cytometry machine across the street and we run the samples over as soon as we get it out of the patient and so our data and data of other institutions comes from that. So it’s not commercially available to the standard local community oncologist. So that’s one issue.</div>
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The other ways that we measure minimal residual disease by PCR or DNA sequencing, you have to have it done a priori, meaning prior to the patients starting treatment. Once you start treatment you may lose the clone and never be able to recapture it or measure it in a minimal way in a patient. And so when I see somebody who’s had three prior relapses in myeloma I’m not going to be able to run that sort of test but I can always do the flow cytometry.</div>
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And so as our treatments get better and we’re achieving this benchmark, what we’re doing is we’re getting the myeloma so low in the person that it never has a chance to catch up. And so the patient is “functionally cured”. And I imagine that we’re functionally curing a slice of our patients nowadays but of course we won’t know that for years.</div>
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<strong style="border: 0px; font-family: inherit; margin: 0px; padding: 0px; vertical-align: baseline;">Jenny: </strong>Okay, that’s great; it’s so much to think about. And it’s one of the reasons why we really advocate being seen by myeloma specialists because the nuances of this disease are so complicated. I mean for you to be able to know that you need to adjust your treatment for a specific patient based on the patient individually takes a lot of sophistication.</div>
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<strong style="border: 0px; font-family: inherit; margin: 0px; padding: 0px; vertical-align: baseline;">Dr. Mark: </strong>I completely agree.</div>
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<strong style="border: 0px; font-family: inherit; margin: 0px; padding: 0px; vertical-align: baseline;">Jenny: </strong>So just a question about that, when you compare data you just look at the numbers like the progression-free survival (PFS) and overall survival (OS) and the complete response and very good partial response (VGPR) and those types of things and you’re comparing those numbers head-to-head as a researcher or is there another tool that you use to compare… When you see studies come out from other institutions, how do you compare those?</div>
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<strong style="border: 0px; font-family: inherit; margin: 0px; padding: 0px; vertical-align: baseline;">Dr. TMark: </strong>Good question. So you’re actually not supposed to compare two studies head-to-head for several reasons. Number 1 is that patients are different in different places. For instance you may have a phase II study from an area of the country that sees primarily African-Americans, or you may have a European study where primarily the patients are Caucasian. But when you’re looking at… you can sort of sense broad trends.</div>
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For instance we know that three drugs are generally better than two drugs in the younger fitter patients. However, in the older patient population there is a recent study called the upfront study that looked at three drugs versus two drugs in older patients and it turns out that there was no difference in efficacy, just more toxicity for three drugs. And what I liked about that phase III study is that it was done in a community setting so more sort of a real life setting.</div>
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The other sort of difficulty is you can’t really compare overall survival, progression-free survival for upfront regimens because the data is dirty. What happens is patients relapse, then they get onto a highly-active regimen and that regimen may be different for all of the patients that relapse from that same primary induction therapy. So that sort of muddies the water a bit and that patients aren’t being treated uniformly and that it makes it impossible to compare.</div>
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I think that again the typical three-drug regimens used in this country, they are pretty much all exactly equivalent. And when you are picking or at least when I am picking, I pick basically on patient factors. Meaning do I trust the patient to be able to fill a pillbox correctly and take their pills every day? Is this the sort of patient that I need to keep a closer eye on so I would like them to come into clinic more often to receive their treatment here — those are generally the more fragile patients. How old is the patient, what is their goal of care?</div>
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In general, younger patients, their goal is to live long as possible and so we absolutely will be aggressive and try to achieve that goal. However the 85-year old patient, their goal is generally not to go into the hospital and to be independent. And so you can get a nice response in these patients but if you destroy them with chemotherapy I think that’s against what you meant to do.</div>
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<strong style="border: 0px; font-family: inherit; margin: 0px; padding: 0px; vertical-align: baseline;">Jenny: </strong>Right, yes. Well, again, it’s a sophisticated use of these different therapies. In my opinion — it’s just my opinion — I don’t think the local oncologist really has the “know how” to do all that. I mean they usually have a standard regimen that looks like “the standard” and so they give it to you and it’s … I don’t know.</div>
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<strong style="border: 0px; font-family: inherit; margin: 0px; padding: 0px; vertical-align: baseline;">Dr. Mark: </strong>Well, there are some other nuances to that as well. We know from gene expression profiling that there are at least eight different kinds of multiple myeloma. And to treat everybody the same way I don’t think is right but we don’t really have data — at least not a lot of data — about risk-adapted therapy. What we have is just a few bits of data about this drug for sort of cytogenetic translocation and so on and so forth.</div>
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But there’s another sort of wrinkle to the difficulties of going to a local oncologist, I’ll give you one example. I have a patient that went to their community doctor with multiple myeloma for upfront therapy and received lenalidomide and dexamethasone and developed a rash. And the patient’s doctor said “Okay you have an allergy to lenalidomide, we can’t use this agent anymore.” And then proceeded to relapse and go through a number of different lines of chemotherapy, became really sick. Then finally was referred over here where we promptly restarted lenalidomide, actually we restarted BIRD, and the patient’s now in his third year of complete remission.</div>
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And so there’s an experience component knowing that a lenalidomide-induced rash is actually pretty common and it’s not an allergic reaction, knowing that we treat patients to progression. If you were a doctor who graduated medical school in the ’80s you were taught you give a few cycles and you stop and you watch and wait because myeloma’s not curable. But now we know the longer you take medicine, the better you do.</div>
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<strong style="border: 0px; font-family: inherit; margin: 0px; padding: 0px; vertical-align: baseline;">Jenny: </strong>Right. Well, let me ask you some questions around the antibiotic that you’re using, the Biaxin. So it reduces inflammation and you’re finding it to be very effective in this combination. I’ve also heard a lot about PD-1 and PD-L1 type of immunotherapies and when you talk about immunotherapies I know you have one coming up as well. But that sometimes at the front end like a CAR T cell or something might accelerate – I’ve heard it described from one of the doctors as you could step on the gas with your immune system and then some of the PD-1 or PD-L1 kind of takes the brakes off the immune system and lets it do its job.</div>
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So it seems like the inflammation blocks some of the drugs from working. Then you’re using all types of therapies and maybe immunotherapies in myeloma, do you see this antibiotic as doing the same types of things as PD-1 or PD-L1 or could they be used together to be even more effective to let these drugs do their job? Or is it entirely unrelated and I don’t know what I’m talking about?</div>
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<strong style="border: 0px; font-family: inherit; margin: 0px; padding: 0px; vertical-align: baseline;">Dr. Mark: </strong>These things all sort of work in different ways but we’re all sort of getting into the same thing which is basically activating T-cells and NK cells and having them clean up the immune system and to do immune surveillance. And so clarithromycin we know activates T-cells; the PD-L1 certainly activates T-cells, that’s how it works. It turns out that elotuzumab actually activates NK cells and CAR T-cells are activated T-cells. And so yeah, we’re all sort of getting towards the same end which is getting these cytotoxic T-cells and NK cells to go in and recognize those myeloma cells as foreigners, and to kill them.</div>
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What’s interesting is again, myeloma is a disease that lives off of inflammation. In the olden days we used to measure IL-6 which is Interleukin 6 and that’s an inflammatory protein made by the liver and it is food for myeloma. If you want to grow myeloma in a lab you have to feed them IL-6 which is pure inflammation every day. And we frequently find that when somebody gets admitted to the hospital with a severe infection and they have myeloma and they go through ICU, sepsis, heavy antibiotics. What happens is their myeloma often goes to sleep for a little while and that’s because of the intense anti-inflammatory cytokine release that happens during the course of the hospitalization.</div>
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And so if we can find other ways to harness the immune system and control the inflammatory process, that’s another key to controlling myeloma. We are interested in all those mechanisms here at Cornell, we’re about to open up a PD-1 trial and we’re looking into CAR T-cells as well. And you can trust that we probably will be adding or playing with Biaxin in those mixes as well.</div>
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<strong style="border: 0px; font-family: inherit; margin: 0px; padding: 0px; vertical-align: baseline;">Jenny: </strong>Well, I think it’s a really exciting agent and are other people picking this up as well, seeing that you’re getting good results with this?</div>
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<strong style="border: 0px; font-family: inherit; margin: 0px; padding: 0px; vertical-align: baseline;">Dr. Mark: </strong>Oh, sure, absolutely. The PETHEMA in Spain is committed to a trial with clarithromycin, that’s a very large network. Johns Hopkins just had a poster at ASH last year about using clarithromycin in their patients. Funny enough, the Chinese have gone all over this and I have been reviewing a lot of papers about using clarithromycin in Chinese patients with multiple myeloma. And my good friend, Jim Berenson, in Los Angeles, he uses clarithromycin.</div>
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I imagine that you ask multiple myeloma doctors about it, they are familiar with the data and they will use it from time to time to break plateaus in their patients or even a sort of upfront therapy. I think it’s more the community oncologist or physician that doubts it. They think, how can an antibiotic possibly be active in a cancer? And my response to that is a doctor had to drink a bottle of H. pylori bacteria to prove that it caused ulcers.</div>
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<strong style="border: 0px; font-family: inherit; margin: 0px; padding: 0px; vertical-align: baseline;">Jenny: </strong>Right. So in what other combinations could you use this antibiotic and what other combinations would you like to try?</div>
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<strong style="border: 0px; font-family: inherit; margin: 0px; padding: 0px; vertical-align: baseline;">Dr. Mark: </strong>Well, we would like to try the clarithromycin-ixazomib-lenalidomide combination. I know that Dr. Asher Chanan-Khan who’s at the Mayo Clinic in Florida right now used it in combination with bortezomib.</div>
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And we didn’t talk about any of our relapsed refractory trials but we had it in combination with pomalidomide and that’s our CLaPD Study — Clarithromycin, Pomalidomide, Dex — and that also had very exciting results. Now if you take a look at Martha Lacy’s data where she used pomalidomide and dexamethasone for myeloma patients that are relapsed after a median ofprior lines of therapy, the overall response rate was around 30% and the progression-free survival was a little shy of four months.</div>
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If you add clarithromycin to the exact same population and we’ve done this study in 120 patients, the overall response rate is doubled at 60% and the progression free survival is doubled as well as more than eight months — and again, simply by taking an antibiotic twice a day.</div>
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<strong style="border: 0px; font-family: inherit; margin: 0px; padding: 0px; vertical-align: baseline;">Jenny: </strong>Yeah, that’s great. That’s so impressive that an antibiotic can just have so much impact to the inflammation and give you such better responses.</div>
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<strong style="border: 0px; font-family: inherit; margin: 0px; padding: 0px; vertical-align: baseline;">Dr. Mark: </strong>And it’s cheap, too.</div>
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<strong style="border: 0px; font-family: inherit; margin: 0px; padding: 0px; vertical-align: baseline;">Jenny: </strong>Right. I would say why isn’t everyone adding this. I could see why you’re so excited about it.</div>
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<strong style="border: 0px; font-family: inherit; margin: 0px; padding: 0px; vertical-align: baseline;">Dr. Mark: </strong>Right. Well, you know, you have to convince people.</div>
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<strong style="border: 0px; font-family: inherit; margin: 0px; padding: 0px; vertical-align: baseline;">Jenny: </strong>Right, true. Well, maybe we want to talk for a minute about some of your relapsed/refractory studies and then I don’t know if you want to mention the CAR T-cell study or anything else you have planned?</div>
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<strong style="border: 0px; font-family: inherit; margin: 0px; padding: 0px; vertical-align: baseline;">Dr. Mark: </strong>The CLaPD trial is sort of our premier trial for relapsed/refractory patients and again it was sort of a homerun for us. The manuscripts are being prepared right now but it was an entirely oral regimen for relapsed/refractory patients that people did really well on. It’s been going on now for about six years and one of our first patients who was referred from Sloan Kettering for pomalidomide, we started this. And after five prior lines of therapy, this patient is now still in his fifth year of complete remission and he’s not the only one. We have people who’ve been in remission for years and on just an oral regimen. So that’s been great.</div>
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We have other sort of homegrown trials. One is using palbociclib for relapsed/refractory myeloma. Palbociclib is novel in that it’s a self-cycle inhibitor. It’s an inhibitor of CD4 and 6 and that’s very important for myeloma. Many myeloma patients have the cyclinD1 or cyclinD3 translocation which is basically a translocation that takes the brakes off the cell’s cycle so the cell can keep on proliferating. What this agent does is it puts the brakes back in there.</div>
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And we have a trial of that in combination with lenalidomide for relapsed/refractory myeloma and again that’s an entirely oral regimen. And what we do is the patients come in, we will actually test their myeloma cells for this marker of CD4 and 6 activity. So we’ll test them for the target, if the target’s there then we will put them on this trial. We’ve got about four patients taking this trial so far and so far so good.</div>
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We also have transplant trials for relapsed/refractory myeloma. One of our more interesting trials is a high-dose Revlimid. So it turns out that in the phase I studies for Revlimid, 50mg is actually more effective than 25mg but nobody could take 50 because of bone marrow suppression. So given that we’re doing a stem cell transplant and we’re destroying the bone marrow anyway, this is a great opportunity to give extra high doses of lenalidomide to see if we can overcome resistance.</div>
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And so we are giving 350mg of lenalidomide daily which is way more than the regular dose and we’re overlapping that with the high-dose melphalan for a transplant. And what we’re seeing is just the high dose lenalidomide alone starts to produce apoptosis before the transplant.</div>
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<strong style="border: 0px; font-family: inherit; margin: 0px; padding: 0px; vertical-align: baseline;">Jenny: </strong>Or you’re killing myeloma cells (aptosis), right?</div>
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<strong style="border: 0px; font-family: inherit; margin: 0px; padding: 0px; vertical-align: baseline;">Dr. Mark: </strong>Yeah, we’re killing myeloma cells right before transplant. And so we’re soon to be overcoming some sort of threshold. High-dose lenalidomide is being explored in other malignancies as well such as acute leukemia. It’s sort of a shock and awe sort of thing for the myeloma.</div>
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<strong style="border: 0px; font-family: inherit; margin: 0px; padding: 0px; vertical-align: baseline;">Jenny: </strong>Interesting. Well, I have some follow up questions but I also want to open it up if anyone has a question and I have a write-in question. So let me do that first and then we’ll go back to my other question.</div>
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So if you have a question for Dr. Mark, you can call 347-637-2631 and press 1 on your keypad. Go ahead with your question.</div>
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<strong style="border: 0px; font-family: inherit; margin: 0px; padding: 0px; vertical-align: baseline;">Caller: </strong>Hi! So first of all, I want to just congratulate you on the Myeloma Crowd Radio for putting together week after week on treatments of this disease that it’s very helpful and today’s program was a great example bringing really new perspectives to us that haven’t been brought out before. So thank you.</div>
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<strong style="border: 0px; font-family: inherit; margin: 0px; padding: 0px; vertical-align: baseline;">Jenny: </strong>Oh, thank you.</div>
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<strong style="border: 0px; font-family: inherit; margin: 0px; padding: 0px; vertical-align: baseline;">Caller: </strong>My first question is when is your phase III study in BIRD going to be open?</div>
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<strong style="border: 0px; font-family: inherit; margin: 0px; padding: 0px; vertical-align: baseline;">Dr. Mark: </strong>Any day. It’s already been IRB-approved and FDA-approved. I’m just waiting for a final contract to go through and I’ve been told any day.</div>
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<strong style="border: 0px; font-family: inherit; margin: 0px; padding: 0px; vertical-align: baseline;">Jenny: </strong>That’s also for newly-diagnosed patients, right, the phase III study?</div>
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<strong style="border: 0px; font-family: inherit; margin: 0px; padding: 0px; vertical-align: baseline;">Dr. Mark: </strong>Yes, that’s upfront.</div>
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<strong style="border: 0px; font-family: inherit; margin: 0px; padding: 0px; vertical-align: baseline;">Jenny: </strong>Okay.</div>
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<strong style="border: 0px; font-family: inherit; margin: 0px; padding: 0px; vertical-align: baseline;">Caller:</strong> So if you’ve already been in treatment you wouldn’t qualify for it?</div>
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<strong style="border: 0px; font-family: inherit; margin: 0px; padding: 0px; vertical-align: baseline;">Dr. Mark: </strong>No. That’s for treatment-naïve patients.</div>
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<strong style="border: 0px; font-family: inherit; margin: 0px; padding: 0px; vertical-align: baseline;">Caller: </strong>Got it. And maybe I missed it but who is the first person to come up with this idea of adding antibiotics in the combos? What was the spark of the idea for that?</div>
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<strong style="border: 0px; font-family: inherit; margin: 0px; padding: 0px; vertical-align: baseline;">Dr. Mark: </strong>It was Brian Durie of IMF fame in the Salmon/Durie criteria or the Durie/Salmon criteria, depending who you ask, who read about it being used in mantle cell lymphoma and decided to try it out in myeloma. It comes basically from him.</div>
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<strong style="border: 0px; font-family: inherit; margin: 0px; padding: 0px; vertical-align: baseline;">Caller:</strong> All right, thank you for taking my call.</div>
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<strong style="border: 0px; font-family: inherit; margin: 0px; padding: 0px; vertical-align: baseline;">Jenny:</strong> Okay, thank you so much.</div>
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Well, we are heading in to ASH and before we stop, I want to ask you about ASH. Can you maybe explain for patients what ASH is and why it’s so important?</div>
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<strong style="border: 0px; font-family: inherit; margin: 0px; padding: 0px; vertical-align: baseline;">Dr. Mark: </strong>So ASH is the American Society of Hematology. And it has an annual meeting in December where about 50,000 hematologists from all over the world come and meet and exchange ideas and also listen to the latest and greatest data – trials that we’re all very interested in for multiple myeloma. An example for that is the IFM/Dana-Farber trial of upfront transplant versus delayed. Those kinds of huge trials are presented there and they are often practice changing.</div>
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New agents are often presented there as well, early stage data for drugs that may be active in multiple myeloma. And behind the scenes, so this is where researchers often meet amongst each other or with pharmaceutical companies to develop concepts for new clinical trials.</div>
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<strong style="border: 0px; font-family: inherit; margin: 0px; padding: 0px; vertical-align: baseline;">Jenny:</strong> And what are you watching for at this year’s ASH?</div>
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<strong style="border: 0px; font-family: inherit; margin: 0px; padding: 0px; vertical-align: baseline;">Dr. Mark: </strong>Well, certainly that Dana-Farber study. That study is VRD transplant followed by len-maintenance versus VRD len-maintenance. So it really answers the question of should a transplant be part of upfront therapy for multiple myeloma.</div>
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Well, I’m interested in a bunch of trials but the other trial I’m interested in is the results of a phase III trial using ixazomib in combination with lenalidomide and dexamethasone, that’s a randomized trial of ixazomib-len/dex versus len/dex for myeloma that’s relapsed after primary therapy. And so again that would be an entirely oral combination for relapsed patients. That is pretty attractive.</div>
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And then we all want to see updates on daratumumab and other monoclonal antibodies in combination or single agent in multiple myeloma.</div>
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<strong style="border: 0px; font-family: inherit; margin: 0px; padding: 0px; vertical-align: baseline;">Jenny:</strong> And I know daratumumab and elotuzumab are looking forward to approval. Do you have any feelings for when these will be approved?</div>
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<strong style="border: 0px; font-family: inherit; margin: 0px; padding: 0px; vertical-align: baseline;">Dr. Mark: </strong>I’m suspecting that we could hear the announcement as soon as ASH comes. And so if not approved at ASH time then I imagine right after the New Year.</div>
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<strong style="border: 0px; font-family: inherit; margin: 0px; padding: 0px; vertical-align: baseline;">Jenny:</strong> Okay. Well, we’re excited to hear about those as well. And did you want to talk about your upcoming CAR study or is there any other thing you’d like to talk about?</div>
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<strong style="border: 0px; font-family: inherit; margin: 0px; padding: 0px; vertical-align: baseline;">Dr. Mark: </strong>Well, CAR T certainly is coming in multiple myeloma and it’s very attractive. It makes a lot of sense using your body’s own immune system training it to fight multiple myeloma. And it’s been used with some success in other malignancies like CLL.</div>
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And there’s a <em style="border: 0px; font-family: inherit; margin: 0px; padding: 0px; vertical-align: baseline;">New England Journal of Medicine</em> paper not too long ago about using CAR T in myeloma with very nice results. This is a very personalized therapy for the patient, in that you are using their own cells. Again, you don’t expect all the side effects or long-term effects that you would from an allogeneic stem cell transplant such as graft-versus-host disease but you get all the benefit and you have a continued immune surveillance against your cancer. So it may represent a functional cure.</div>
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This is the first generation of CAR T in myeloma however and so we have to learn about things like controlling cytokines for instance after infusion of those T-cells. A cytokine storm can make somebody very sick with low blood pressure, for instance. And we don’t exactly know what the target should be either. In that New England Journal of Medicine paper, the target was CD19, which is seen in a very small percentage in multiple myeloma but it worked.</div>
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In our CAR T study, we’re going to be using CD38 which of course is found in all the myeloma cells. But CD38 is also found in smooth muscle, it’s also found in red blood cells and so we don’t know what the off-target effects of that will be. And it’s also the first generation of CAR T and so there may be refinements that need to be made in the future with the technology.</div>
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I remember in college when I was doing DNA cloning and sequencing, we could sequence only about 100 base pairs at the time and it was an all-day process. Now you can put a drop of blood in a machine the size of a desktop computer and get somebody’s whole genome in a couple of hours. So I imagine even as close as five years from now, CAR T is going to be very much more specific and an easier process but we’ve got to start somewhere.</div>
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<strong style="border: 0px; font-family: inherit; margin: 0px; padding: 0px; vertical-align: baseline;">Jenny:</strong> Right. And with the recent leukemia thing that we heard about last week, they’re using a totally different T-cell approach where they did some sort of gene splicing or something for the baby with leukemia. It sounds like usually in CAR T-cells with your own T-cells that are being engineered and you’re getting them back but this was like a donor-type T-cell, right?</div>
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<strong style="border: 0px; font-family: inherit; margin: 0px; padding: 0px; vertical-align: baseline;">Dr. Mark: </strong>Right, exactly, I think that gene therapy is coming. It was at ASH several years ago that they were using gene therapy to treat hemophilia and actually curing hemophilia in patients in the UK. So yes, it’s here.</div>
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The issue with multiple myeloma is it’s in adults and gene therapy in adults is hard. You generally need to work with only one kind of cell at a time.</div>
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<strong style="border: 0px; font-family: inherit; margin: 0px; padding: 0px; vertical-align: baseline;">Jenny:</strong> So one more question from a write-in question and then my own question to finish up because we’re getting close to time. It’s surprising how fast the time goes.</div>
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Well, let me ask my question first and then I’ll go back to it. What is the value to you of patients participating in your clinical trials because it seems that you have an extensive number of clinical trials open for myeloma and are doing quite a bit of research in the space.</div>
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<strong style="border: 0px; font-family: inherit; margin: 0px; padding: 0px; vertical-align: baseline;">Dr. Mark: </strong>Without patients willing to do clinical trials, we can’t move the field forward. There would be no innovation, there would be no new drugs, and there would be no optimization of therapy. And we are thankful for all of our patients that are willing to participate in clinical trials and I have to tell you that the people who are doing clinical trials, the researchers out there are doing it for altruistic reasons.</div>
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Patients may think that they’re being experimented on for profit, for gain but that is absolutely not the case. We are here to learn about multiple myeloma and to have patients live longer. And so without people doing clinical trials, it’s not going to happen.</div>
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<strong style="border: 0px; font-family: inherit; margin: 0px; padding: 0px; vertical-align: baseline;">Jenny:</strong> Well, that’s why we started this show. It’s because there are less than 3% to 5% maybe of patients participating in clinical trials and I just can’t imagine what we could accomplish together if we join the clinical trials, even doubled the number. It would be just so stunning; you could do your work so much faster and come to conclusions so much faster.</div>
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<strong style="border: 0px; font-family: inherit; margin: 0px; padding: 0px; vertical-align: baseline;">Dr. Mark: </strong>I completely agree with you. In Europe where a lot of patients go into clinical trials for the reason is that they don’t have the drug available outside of the clinical trial, they accrue much quicker and generally get the information out there much faster than the United States. It’s embarrassing actually. Because I think that first of all, patients in Europe don’t have access to drugs like they do in the United States. And I think there might be more of a socialistic or collective spirit there. In America it’s all about the individual.</div>
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<strong style="border: 0px; font-family: inherit; margin: 0px; padding: 0px; vertical-align: baseline;">Jenny:</strong> Well I know that in Europe it’s more common too because they have smaller patient groups so it just makes sense to combine and collaborate and a lot of it is maybe because of that — maybe not.</div>
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<strong style="border: 0px; font-family: inherit; margin: 0px; padding: 0px; vertical-align: baseline;">Dr. Mark: </strong>Well, the European data is great but if you take a look at the demographics, it is universally 80% to 90% white men in their 60s and we know that that is not the myeloma population. Myeloma is generally black men in their 70s. And so it’s hard to sort of extrapolate that and use it in real life.</div>
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<strong style="border: 0px; font-family: inherit; margin: 0px; padding: 0px; vertical-align: baseline;">Jenny:</strong> Yes, or white women in their 40s. You never know what you’re going to get.</div>
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So the last question that I found was from Anna and she said there was a mention about the BIRD study from the recent Rome International Working Group meeting – what was that announcement?</div>
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<strong style="border: 0px; font-family: inherit; margin: 0px; padding: 0px; vertical-align: baseline;">Dr. Mark: </strong>Well, our Car-BIRD study was presented at plenary session over there in Rome. One of the fellows that we mentored for Car-BIRD actually won an investigator award over there. And so it’s simply an opportunity to present that to a large audience.</div>
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<strong style="border: 0px; font-family: inherit; margin: 0px; padding: 0px; vertical-align: baseline;">Jenny:</strong> Oh, that’s great. Well, we hope to see more about it, Dr. Mark. We’re so grateful that you’re working on myeloma and are looking for better and easier and more effective therapies for patients. We really owe you and the whole community an intense amount of gratitude for the work that you’re doing.</div>
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<strong style="border: 0px; font-family: inherit; margin: 0px; padding: 0px; vertical-align: baseline;">Dr. Mark: </strong>Well, my thanks to the patients that participate in clinical trials and are invested in eliminating myeloma.</div>
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<strong style="border: 0px; font-family: inherit; margin: 0px; padding: 0px; vertical-align: baseline;">Jenny:</strong> Yes, we’re so thankful for all you’re doing. So have a great time at ASH and please keep going with your fantastic research.</div>
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<strong style="border: 0px; font-family: inherit; margin: 0px; padding: 0px; vertical-align: baseline;">Dr. Mark: </strong>Thank you, Jenny.</div>
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<strong style="border: 0px; font-family: inherit; margin: 0px; padding: 0px; vertical-align: baseline;">Jenny: </strong>Thanks. Thank you for listening to Myeloma Crowd Radio. We know that patients can help support the discovery of a cure and we encourage you to listen to the show and become involved.</div>
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Keep Fighting</div>
The Myeloma Fighterhttp://www.blogger.com/profile/13967193310174306702noreply@blogger.com0tag:blogger.com,1999:blog-7811274701009089345.post-62434177392596067492015-11-14T20:01:00.000-05:002015-11-14T22:50:12.405-05:00The treatment of multiple myeloma has rapidly advanced over the past 10 years, says Shaji Kumar, MD, professor of Medicine, Mayo Clinic<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiwhXq-l168l5YdznxDdkxTCp9L6Xo8J2opbNcaMOI8z0lrgK-NcBjzYQfGM0wS0kIwEwH_S9_j0BEtnfqxlPzmdIAWxHQh8cLFx4JQR4nqsRmMcaR8eR0ZVbHBvH-9GL6clltOCrNSD74K/s1600/Kumar.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiwhXq-l168l5YdznxDdkxTCp9L6Xo8J2opbNcaMOI8z0lrgK-NcBjzYQfGM0wS0kIwEwH_S9_j0BEtnfqxlPzmdIAWxHQh8cLFx4JQR4nqsRmMcaR8eR0ZVbHBvH-9GL6clltOCrNSD74K/s1600/Kumar.jpg" /></a></div>
<span style="background-color: white;">The treatment of multiple myeloma has rapidly advanced over the past 10 years, says Shaji Kumar, MD, professor of Medicine, Mayo Clinic.</span><br />
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<span style="background-color: white;">“I think we have gone from a place where we could control the disease for a few years—patients used to live an average of 3 years—to now where we are seeing an average life expectancy of 6 to 7 years in multiple myeloma patients,” he says. “Changes have really happened over the past decade, primarily due to the introduction of new drugs and a more consistent use of stem cell transplant.”</span><br />
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<span style="background-color: white;">These new drugs include carfilzomib (Kyprolis), which recently had its FDA approval in multiple myeloma expanded to include relapsed patients who have received at least 1 to 3 prior lines of therapy. The approval was based on results from the phase III ASPIRE trial, which found the combination of carfilzomib, lenalidomide (Revlimid), and low-dose dexamethasone reduced the risk of progression by 31% compared with lenalidomide and low-dose dexamethasone alone in patients with relapsed multiple myeloma. The median progression-free survival (PFS) with carfilzomib was 26.3 months compared with 17.6 months without the proteasome inhibitor (HR, 0.69; 95% CI, 0.57-0.83; </span><em style="background-color: white;">P</em><span style="background-color: white;"> <.0001).</span><br />
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<span style="background-color: white;">The FDA also granted a priority review designation to carfilzomib in combination with dexamethasone for patients with relapsed multiple myeloma following prior treatment with at least one therapy, based on findings from the phase III ENDEAVOR trial. In the study, carfilzomib and dexamethasone reduced the risk of progression by 47% compared with bortezomib and dexamethasone. The PFS with carfilzomib was 18.7 versus 9.4 months with bortezomib (HR, 0.53; 95% CI, 0.44-0.65; </span><em style="background-color: white;">P</em><span style="background-color: white;"> <.0001).</span><br />
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<span style="background-color: white;">Elotuzumab (Empliciti), SLAMF7-directed immunostimulatory antibody, has also shown improved PFS in multiple myeloma.</span><br />
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<span style="background-color: white;">The open-label phase III ELOQUENT-2 trial, which included 646 patients with relapsed/refractory multiple myeloma, found that after a median follow-up of 2 years, PFS with elotuzumab in combination with lenalidomide or dexamethasone was 19.4 months (95% CI, 16.6-22.2) versus 14.9 months (95% CI, 12.1-17.2) with lenalidomide and dexamethasone alone (HR, 0.70; 95% CI, 0.57-0.85; </span><em style="background-color: white;">P</em><span style="background-color: white;"> <.001). The 1-year PFS for the elotuzumab arm was 68% versus 57% with the control arm, and the 2-year PFS rate was 41% in the elotuzumab arm versus 27% in the control arm.</span><br />
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<span style="background-color: white;">The FDA has granted elotuzumab a priority review for use in combination therapy in patients with multiple myeloma following the failure of one or more prior therapies.</span><br />
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<span style="background-color: white;">In addition to the evolution of the treatment paradigm, the definition of multiple myeloma has also evolved, as biomarkers now allow patients to receive treatment before they would traditionally be diagnosed with the disease, says Kumar.</span><br />
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<span style="background-color: white;">In an interview with </span><em style="background-color: white;">OncLive</em><span style="background-color: white;">, Kumar discusses how these and other changes have affected the treatment of multiple myeloma and what is on the horizon for the disease.</span><br />
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<em>OncLive</em>: How has the characterization of multiple myeloma evolved in recent years?</h3>
<em style="background-color: white;">Kumar</em><span style="background-color: white;">: The definition of multiple myeloma that requires treatment was based on if patients were having any organ damage, which typically would be shown by high-calcium levels, bone disease, anemia, or any kidney issues. We have expanded that definition over the past year to include some biomarkers that predict for the development of these symptoms. Instead of waiting for something bad to happen, we are starting to look for indications that these symptoms are going to start soon, so that we can start patients on treatment sooner.</span><br />
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<span style="background-color: white;">The definition of myeloma has expanded to include those patients who have more than 60% plasma cells in the bone marrow, those who have a free-ligand ratio that is more than 100, and those who have one or more lesions on an MRI or a PET scan.</span><br />
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<span style="background-color: white;">We have learned that, if you have one or more of these characteristics, your risk of getting symptomatic or active multiple myeloma within 2 years is over 80%. We decided that it is better to treat these patients earlier in these cases.</span><br />
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What are the most effective treatments for multiple myeloma?</h3>
<span style="background-color: white;">The treatment paradigm for multiple myeloma has really changed over the past decade. Prior to that, it was mostly alkylating agents and steroid medications. The two major classes of drugs that are used currently for multiple myeloma include proteasome inhibitors such as bortezomib (Velcade) and carfilzomib (Kyprolis), both of which are approved, and immunomodulatory agents like thalidomide (Thalomid), lenalidomide (Revlimid), and pomalidomide (Pomalyst).</span><br />
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<span style="background-color: white;">The third most effective treatment available is stem cell transplant. Patients who are eligible to go through a stem cell transplant should always be considered for one. - </span><span style="background-color: white;">The proteasome inhibitors have to be given either subcutaneously or intramuscularly. They are very effective and partner very well with a variety of agents in combination. The main side effects we see with these drugs are peripheral neuropathy, especially with bortezomib, as well as increased blood pressure and some heart-related side effects with carfilzomib.</span><br />
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<span style="background-color: white;">One advantage of immunomodulatory drugs is that they are all oral. They also tend to be very effective. The side effects we primarily see are a lowering of blood count, skin rash, and fatigue.</span><br />
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<span style="background-color: white;">Overall, both of these classes of drugs are very well tolerated. Combinations of both immunomodulatory drugs and proteasome inhibitors are some of the most effective treatments we have for treating multiple myeloma.</span><br />
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What options are on the horizon for patients with recurrent disease?</h3>
<span style="background-color: white;">Right now, all patients with myeloma will eventually have the disease recur. We have a variety of options for treating patients with recurrent disease. We have several new drugs that have come to the market, including pomalidomide. There are also several investigational drugs currently ongoing in clinical trials. The most exciting are the monoclonal antibodies. These include durvalumab (MEDI4736) and SAR650984, both of which are anti-CD38 monoclonal antibodies. Both have been shown to be effective in early clinical trials. There is also a drug called elotuzumab that targets SLAMF7. When combined with lenalidomide, it has been shown to be quite effective. There are a lot of new options out there, both approved and also going through clinical trials.</span><br />
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Beyond monoclonal antibodies, what immunotherapy approaches might eventually play a role in treating multiple myeloma?</h3>
<span style="background-color: white;">There are some early reports of chimeric antigen receptor T-cell therapies showing some promise; we will need to wait and see how that plays out. There are also some other immune approaches with potential, including vaccines that have been investigated over the past few years. Some recent data suggests this may be effective.</span><br />
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Where do you hope to see the treatment paradigm in multiple myeloma going over the next 5 to 10 years?</h3>
<span style="background-color: white;">Progress needs to continue to be made. There are several new classes of drugs being introduced in monoclonal antibodies and more targeted therapies, which can all be used in combination. The efficacy of these combinations continues to improve. I think we will have deeper responses going forward for patients with multiple myeloma, and responses that can be longer lasting. I believe that is the direction that myeloma treatment is going toward. It will move toward more effective regimens and treatments used for a longer period of time, resulting in sustained control of the disease. Eventually, we feel this will translate into a cure of the disease, as well. </span><br />
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<span style="background-color: white;">Keep Fighting! https://www.facebook.com/MyelomaFighter</span>The Myeloma Fighterhttp://www.blogger.com/profile/13967193310174306702noreply@blogger.com0tag:blogger.com,1999:blog-7811274701009089345.post-39217378541459814292015-07-15T02:03:00.000-04:002015-07-15T02:03:08.572-04:00Info on Kyprolis Very Very Prommising Drug<div style="-webkit-font-smoothing: antialiased; background-color: #f4f5f7; color: #333333; font-family: 'Palatino Linotype', 'Book Antiqua', Palatino, serif; font-size: 16px; line-height: 20.7999992370605px; margin-bottom: 15px; margin-top: 15px; padding: 0px;">
Hello readers and Fellow Fighters</div>
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Finally found some info on this drug that has been around in the US but not available in Canada yet. Not even mentioned anywhere in Canada yet. We need to do something about this!</div>
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Read on:</div>
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Now, this ambitious biotech is going after an expanded indication for Kyprolis for first-line treatment of refractory multiple myeloma. Based on data from a phase III study, patients whose treatment regimens included Kyprolis had an average of 18.7 months of progression-free survival---about twice as much as patients whose regimens included Velcade, the current treatment standard manufactured by Takeda and Johnson & Johnson.</div>
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Analysts suspect that Kyprolis has a good shot of gaining FDA approval for first-line treatment, because the FDA tends to look favorably upon progression-free survival data. However, the story is different in the EU, where the focus tends to be on overall survival.</div>
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Thanks for reading</div>
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Keep Fighting</div>
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Yvon</div>
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The Myeloma Fighterhttp://www.blogger.com/profile/13967193310174306702noreply@blogger.com2tag:blogger.com,1999:blog-7811274701009089345.post-85242503782357535802015-06-13T00:06:00.000-04:002015-06-13T00:06:52.175-04:00Milestone reached 12 years Surviving and Fighting Multiple #MyelomaWell here we are. Made it! 12 year mark is here. What a long battle. But I'm still winning!<br />
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It's been a pretty tough year so far being on Revlimid/Dex protocol but not worst than any other protocol I've been through. The only important thing today is that I've broken the 12 year barrier and I am mighty proud of the achievement. Still there for my beautiful 24 years old Daughter and living life as the best I can.<br />
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Made lots of friends with MM through Social Media and trying to help to the best of my knowledge acquired through the years. And they are helping me too with their inspiring journey with MM.<br />
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This post won't be very long as my new friend Dyslexia is slowing down my typing ability. But I have acquired a Talk to Text software (got the CD yesterday) that will help me alot. Took me 1/2 hour to type this. So please bare with me I will post again as soon as I can.<br />
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In the meantime......Keep Fighting!The Myeloma Fighterhttp://www.blogger.com/profile/13967193310174306702noreply@blogger.com2Ham-Nord, QC, Canada45.900521653807431 -71.65145874023437545.81206565380743 -71.812820240234373 45.988977653807432 -71.490097240234377tag:blogger.com,1999:blog-7811274701009089345.post-31145944182608425192014-06-12T15:28:00.000-04:002015-06-13T19:02:40.730-04:00Calabrating my 11th year surviving Stage 3 Multiple MyelomaHello readers<br />
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This is a short post. I am posting today because tomorrow I will not have an Internet connection for a while.<br />
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Just wanted to share with you that Friday the 13 I will be celebrating my 11th year Surviving Stage 3 Multiple Myeloma.<br />
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2014 so far has been somewhat of a challenge but I made it!<br />
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Thank you everyone for your support!<br />
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Keep Fighting<br />
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YvonThe Myeloma Fighterhttp://www.blogger.com/profile/13967193310174306702noreply@blogger.com14tag:blogger.com,1999:blog-7811274701009089345.post-38401515118247266342011-12-15T13:28:00.001-05:002011-12-15T13:29:36.953-05:00Stem Cell Transplant Blog Question:Hello readers<br />
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Ya I know I do not post often enough! This one will be short!<br />
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Any other Cancer Fighters affected by the weather (More pain, fatigue etc..?)<br />
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Checking if it's my imagination or not.<br />
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Keep Fighting<br />
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YvonThe Myeloma Fighterhttp://www.blogger.com/profile/13967193310174306702noreply@blogger.com9tag:blogger.com,1999:blog-7811274701009089345.post-86479971854755796552011-09-27T17:18:00.002-04:002011-09-29T14:16:21.097-04:00Stem Cell Transplant Blog new personal post!Hello readers and fellow Cancer Fighters<br />
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Well today I just want to write about someone else!<br />
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Another Myeloma Fighter, His name is John Snippe.<br />
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His is undergoing his first stem cell transplant as I write. <br />
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He received his Cells on Sept 22. He is too sick to post right now so, My heart and Prayers go out to you Today John.<br />
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Been there twice myself! It is a very tough procedure, yet a simple one! <br />
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You get Chemo...They Give you the stem cells back and then it's just a waiting game! <br />
It's different for everyone. But I too was very sick for a couple of days during the procedure!<br />
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So Sheers to you John Snippe! Hope to hear from your success soon!<br />
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Follow John on Twitter: @SnipJ<br />
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Or read his very informative Blog where he writes about Stem Cell Harvest as I forgot to write about myself but John has Blogged about it so well that I don't need to anymore...lol! <br />
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See: <a href="http://www.snippe.ca/">http://www.snippe.ca/</a><br />
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Keep Fighting John! ...and all of you too!<br />
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YvonThe Myeloma Fighterhttp://www.blogger.com/profile/13967193310174306702noreply@blogger.com0tag:blogger.com,1999:blog-7811274701009089345.post-43359461995486209302011-06-13T13:18:00.001-04:002011-06-13T14:40:55.978-04:00Today is my 8th year Surviving Multiple Myeloma.<span class="messageBody" data-ft="{"type":3}">Today is my 8th year Surviving Multiple Myeloma. Was diagnosed June 13 2003.</span><br />
<span class="messageBody" data-ft="{"type":3}">8 years...can you believe it! 8 years of battle, of ups and downs and joys and hardship! Wow! At first I Honestly didn't think I'd make it this long. Not with what the Docs told me. But I'm still here and you know what? I'm gonna celebrate!</span><br />
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Happy Survival Anniversary to meeeeeeeee!</span><br />
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</div><div class="separator" style="clear: both; text-align: left;">Keep Fighting</div><div class="separator" style="clear: both; text-align: left;"><br />
</div><div class="separator" style="clear: both; text-align: left;">Yvon</div>The Myeloma Fighterhttp://www.blogger.com/profile/13967193310174306702noreply@blogger.com16tag:blogger.com,1999:blog-7811274701009089345.post-71031487483082159452011-03-25T13:23:00.000-04:002011-03-25T13:23:10.239-04:00Comments on PostsHello readers<br />
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Just as an info, if someone asks a question as a comment below my posts I always reply as a comment below it.<br />
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Besides that all is good.<br />
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Keep fighting.<br />
<br />
YvonThe Myeloma Fighterhttp://www.blogger.com/profile/13967193310174306702noreply@blogger.com6tag:blogger.com,1999:blog-7811274701009089345.post-43317390640514031962011-03-23T17:23:00.000-04:002011-03-23T17:23:17.664-04:00Stem Cell Transplant Blog day +54Hello readers<br />
<br />
I have not been blogging for a while as I took a break from the "Social Networks" while I sort out some personal stuff. Just very tired and no energy. Motivation is hard for now.<br />
<br />
It's been 54 days already. But I have had no new Dr. appointments so don't know where things are at for now.<br />
<br />
Not an easy feeling since you have to wait 100 days after transplant to know how well the transplant went and where the Cancer is at. But half way there.<br />
<br />
My eyes are acting up again so it's a bit painful to see my screen clearly still.<br />
<br />
But, never give up!<br />
<br />
Keep fighting<br />
<br />
YvonThe Myeloma Fighterhttp://www.blogger.com/profile/13967193310174306702noreply@blogger.com4tag:blogger.com,1999:blog-7811274701009089345.post-45805256159309016162011-03-05T15:25:00.000-05:002011-03-05T15:25:21.351-05:00Stem Cell Transplant Blog day +33 Tips and TricksHello again everyone.<br />
<br />
33 days after transplant already. Things are getting better and better. My eyesight is back to what it used to be. Digestion is perfect and my heart seems to be getting back to normal a little more everyday. Feeling a little disappointed about yesterday's post as I expected more feedback and or comments.<br />
<br />
Like they say, the only reason we have deceptions is because we have expectations, so It's up to me to keep on rolling no matter what. I do not Blog everyday as I had promised myself but I accept the fact that I'm not always up to it yet. I'll get there soon!<br />
<br />
Anyway, as promise a while back, here are some tricks I tried and succeeded at.<br />
<br />
When I got back home form the transplant my priorities were to stop the diarrhea and nausea ASAP.<br />
<br />
So here's what I did. First I took some Imodium to slow things down the first evening. Then I started taking Psyllium right away. Psyllium has the fantastic virtues of stopping both diarrhea and or constipation. It does that by absorbing and retaining water. You can either get it in bulk at your local health food store and mix it with juice or water or go the lazy way like me and just go to your local drugstore and buy Metamucil Capsules. Psyllium is all it contains! Don't buy the powdered version of Metamucil as it contains artificial flavors and sweeteners. Take 2 capsules 3 times a day with a glass of water and make sure you drink enough throughout the day. I haven't had to take Imodium since that first evening. Psyllium really works! At least for me!<br />
<br />
Now for the nausea, well I found that if I waited too long to eat something after getting up in the morning I would spontaneously get nausea and vomiting after just 5 minutes after getting up but with hardly anything coming out! So instead of waiting till I was done washing up and all, I started to make sure I had prepared something the evening before and either eat or drink something as soon as I would get up. And it worked perfectly! So I suggest you do the same. If you like it, simply have a bottle of Insure close by and just have a few sips to get something in your stomach ASAP. After that if it's the first few days after getting back home, make sure you eat small meals throughout the day to keep the nausea at bay! I started by eating small meals every 2 hours until I worked myself up to 3 regular meals a day. I made it and now, no more nausea and or vomiting and no more diarrhea either.<br />
<br />
Hope this is helpful to someone!<br />
<br />
Keep Fighting!<br />
<br />
YvonThe Myeloma Fighterhttp://www.blogger.com/profile/13967193310174306702noreply@blogger.com7tag:blogger.com,1999:blog-7811274701009089345.post-17062787790035851142011-03-04T16:15:00.002-05:002011-03-05T14:11:11.830-05:00Stem Cell Transplant Blog: Important Questions and Answers for Newly Diagnosed Cancer PatientsHello everyone.<br />
<br />
Long time no Post! haha! Finally my eyes are getting better and the heart rate is slowing down! So that's good news!<br />
<br />
I received some questions from a newly diagnosed Multiple Myeloma Patient. So I am using this as my post today as these questions are very important. I will not name the person until I have his permission.<br />
<br />
So here goes:<br />
<br />
<div><div style="color: black; display: inline; font-family: "Calibri"; font-style: normal; font-weight: normal; text-decoration: none;"><div style="color: black; display: inline; font-family: "Calibri"; font-style: normal; font-weight: normal; text-decoration: none;"><span style="font-family: inherit;">Hi Yvon,</span><br />
<span style="font-family: inherit;"><br />
</span><br />
<span style="font-family: inherit;">I've been recently diagnosed with smoldering myeloma. (15% Bone Marrow infiltrated) I'm 34 with three small kids (1,3,5). </span><br />
<span style="font-family: inherit;">They found the myeloma two weeks after the birth of my third son. My docs at Heidelberg give me 3 years, if I'm lucky, </span><br />
<span style="font-family: inherit;">till the myeloma will be active. So should better think about, what to do. <em><span style="color: blue;">Well frankly Peter 15% isn't that bad. If it was 30 or 40% then you know your in trouble. At that level, they could have done the Marrow aspiration on another location on your body and end up with a different level. (Info I got from my Oncologist). But you also need to know more about your MM (Multiple Myeloma) Which type do you have? </span><span style="color: blue;">alpha [IgA], gamma [IgG], mu [IgM], delta [IgD], or epsilon [IgE]? What is your M spike? What is your </span><span style="color: blue;">Beta-2 microglobulin at? Do you have deletion of Chromosome 13? These are all important factors that you should know and learn. The more you know about your opponent the better. Personally what I would do if I was you is get myself on Curcumin with Bioperine ASAP. I’ve had an M spike of 4.7 for 8 months just disappear...Poufff! So do not focus too much on your 15%. I was at 78% one time! And now with the new average survival rate of a newly diagnosed patient with “active” Multiple Myeloma being 8 years, add that to the 3 years they told you about you’re still around for at least 11+ years. And with all the new developments in the research for a cure. Multiple Myeloma is becoming more of a Treatable Cancer then an incurable one!</span></em></span></div></div></div><div style="font-family: Tahoma; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;"><div style="color: black; display: inline; font-family: "Calibri"; font-style: normal; font-weight: normal; text-decoration: none;"><span style="font-family: inherit;">I have some questions. Perhaps you could help me a bit, that would be great:</span><br />
<span style="font-family: inherit;"><br />
</span><br />
<span style="font-family: inherit;">1. After your experience would you have changed the front line treatment? I think about getting treatment in Arkansas? Would you do radical treatment to prolong the remission? Do you think treatment there is better than in Europe? <em><span style="color: blue;">Well, that’s a hard one to answer. From my experience treatments vary from one Hospital to another and even from one Oncologist to another. In a way you have to be your own doctor also. That is why you have to learn as much as possible about your disease. As for me, after my first transplant my M-Spike was still at 4.7 so they told me “Well it might disappear after the second transplant so why wont we do it now? No way I said! I was offered “Maintenance Chemo” I refused that also, and 8 months after the transplant the M-Spike disappeared! And there was no trace of MM for more then 4 years! So it was a good decision on my part.</span></em></span><br />
<span style="font-family: inherit;"><br />
</span><br />
<span style="font-family: inherit;">2. How do you get your positive attitude. I'm thinking the whole day about the myeloma and the dark future. Do you have a trick, how to live your live and to deal with the fear?</span><br />
<span style="font-family: inherit;">I wake up and the first thing I have to think about is myeloma. <em><span style="color: blue;">That’s a pretty good one too. Well, if you think I’ve always had that attitude, you are wrong. The first 6 months after my diagnosis (June 2003) It’s the only thing I could think of day in day out! I was sort of “Shoved” into treatment because I was first admitted for sepsis and 10 days later I was told I had Stage 3 Multiple Myeloma (Had no Idea what it was then, only knew at the time that it was incurable). And then within 24 hours I had a Porth a Cath installed and my first round of Chemo right away! I was I a daze for a few months and then I said to myself “STOP” and that is was I also told the Hospital. My positive attitude was a decision I took period! So I stopped all treatments, had my Porth removed and went on the Alternative Medicine way. I wanted to be able to tell myself “At least I gave it a try”. So I did it, tried pretty much everything out there! Then I came back to Canada in June 2004. Had my first Oncology appointment In Canada August 4 2004. My Bone Marrow Infiltration as you say had went from 11% (After the Chemos in France) to 78%. So I then took the decision to go for it completely. Had more then 10 months of Chemos and my first transplant July 18 2005. Entered the Hospital with a great positive attitude. I also had a Newsletter back then describing my transplant everyday. I even filmed it but never got to transfer the tapes as my camera got stolen! I will get to it eventually, I still have the tapes! To make a long story short Peter...you have to decide to become a Fighter and only you can kick your own butt and do it! Be a Super Hero P.... P.....!!! Before I thought I was a Looser and did think this way about myself for a long time. But now I know I’m a Fighter! And who do I have to thank for that ? Multiple Myeloma!</span></em></span><br />
<span style="font-family: inherit;"><br />
</span><br />
<span style="font-family: inherit;">3. Do you think, doctors do transplants better today than in 2005? I don't see, that it really gets better. Do you see progression? They are speaking myeloma a chronic disease - are you feeling they are there? <em><span style="color: blue;">Personally as far as transplant goes I have not seen any difference in treatments. Same Chemo, Same side effects. The only difference I’ve seen is the quality of the Hospital Staff but I wont elaborate on the subject. Since I know you’ve read most of my Blog, you’ll understand what I mean!</span></em></span><br />
<span style="font-family: inherit;"><br />
</span><br />
<span style="font-family: inherit;">4. How are you dealing with your children and your wife? How are they feeling about your myeloma? How are you living with them? Is it a "new normal" life or a war? <em><span style="color: blue;">Well, very honestly. For my wife and Daughter, I’m their Hero! They are tremendously proud of me. But that is because of MY attitude. And they help me stay positive as I feel responsible for them. If I was always depressed and negative I know for sure it would not be so. So it’s all up to you again! Your family WILL follow you! It’s your decision to make! Of course I have ups and downs but at least I have my wife (My best friend) to talk too and the lows don’t last very long!</span></em></span><br />
<span style="font-family: inherit;"><br />
</span><br />
<span style="font-family: inherit;">I hope it's okay writing you my (personal) questions. It would be very kind, if you are honest to me. Sometimes I'm so desperate, I can't tell you. So I reach out and talk to some colleagues of our exclusive club. ;-)</span></div></div><div><div style="color: black; display: inline; font-family: "Calibri"; font-style: normal; font-weight: normal; text-decoration: none;"></div></div><div><div style="color: black; display: inline; font-family: "Calibri"; font-style: normal; font-weight: normal; text-decoration: none;"><em><span style="color: blue; font-family: inherit;">Of course it’s OK. That is what keeps me going, Helping others with the experience I’ve been through. </span></em></div><div style="font-family: Tahoma; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;"><span style="font-family: inherit;"><br />
</span><br />
<span style="font-family: inherit;"><br />
</span><br />
<span style="color: blue;"><span style="color: black; font-family: inherit;">Thank you very, very much!!!</span><em><span style="font-family: inherit;"> You are very welcome and I thank YOU for your questions. This will help others! If you do not mind I will use these questions for my next Post on my Blog. It’s up to you if you allow me to post your name or not.<br />
<br />
Keep Fighting</span></em></span></div><div style="font-family: Tahoma; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;"></div><div style="font-family: Tahoma; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;"><em><span style="color: blue; font-family: inherit;">Yvon Papillon</span></em></div></div>The Myeloma Fighterhttp://www.blogger.com/profile/13967193310174306702noreply@blogger.com1tag:blogger.com,1999:blog-7811274701009089345.post-51572773867642131252011-02-24T14:34:00.000-05:002011-02-24T14:34:53.397-05:00Stem Cell Transplant Blog 25 days after Transplant Check-up Day!Good News and Challenges!<br />
<br />
Hello readers.<br />
<br />
Well, last Tuesday Feb 22 was my Check-Up day at the Hospital where I got my Transplant. It was a long day. 6 1/2 hours at the Hospital and 5 1/2 hour drive! Man was I tired when I got back.<br />
<br />
On a personal level it was a Fantastic day. Every time I go to the Hospital I don't really think about the appointment itself but "What can I do to either make people laugh or change their mind about Cancer"<br />
<br />
I succeeded at both! First I asked my wife to draw a big smile with a tongue sticking out on my mask. Had to where one, might as well use it! Got lots of laughs and smiles from that. But still wanted to do more. And it came to me on it's own! After one hour sitting down in the waiting room, a gentleman sat right front of me. He stared at me for a while. I thought it was the mask but after a while he just blurted out to me "How long have you had this?" 8 years I replied. Then he rolled his eyes and sighed deeply. His second question was "What was your first prognosis?" 6 months to 1 year 1/2 I told him! He shook his head staring at the floor again. Then he told me that he had some kind of incurable form of Melanoma and they told him he had only 4 to 6 months to live a year ago. He had tried Chemo but it didn't work, so he went on a trial Protocol and...it worked. He told me that he was so sure he was going to die shortly that he took an early retirement but instead of a monthly paycheck he took a lump sum and almost spent it all...! I asked him to show me where he had his expiration date tattooed? He stared at the floor again saying he wasn't too proud of himself about that. To make a long story short, after talking with him for about 15 min. His name was called out, he stood up, shook my hand and thanked me for changing his mind about Cancer and said that he would make an appointment with his financial advisor to make at least a 3 year plan with what he has left. <br />
<br />
Lesson to be learned her for all of you Cancer Fighters: Do not listen to Prognosis. You do not have an expiration date written anywhere! Keep Fighting with all you have. <br />
<br />
I have a Twitter follower named Madison Carlista who was diagnosed with <span style="color: #777777;"><span style="font-family: inherit;"><span style="color: black;">Advanced Cervical Cancer with a Prognosis of 3 to 6 months..... That was 9 years ago!</span><em> </em></span></span><span style="color: black; font-family: inherit;">So, Never give up! And get a second opinion if you don't like what you hear!</span><br />
<br />
<span style="color: black; font-family: inherit;">So now, what about the rest of my Check-Up day:</span><br />
<br />
<span style="font-family: inherit;">Blood work results were pretty impressive according to the head Nurse and the Oncologist. The Check-Ups are suppose to be weekly for a few months after the transplant. But since everything (Almost) is OK with no nausea or diarrhea my next appointment is in 6 weeks! Whooohooo!</span><br />
<br />
Now for the Challenge: Well my heart isn't doing so well for now! Blood pressure too low and heart rate way too high. Example: Blood pressure this morning 90 over 53! Heart rate at rest 105, Showering 147, getting dressed 125! So I was told to consult with a cardiologist ASAP. But here ASAP can take a while. I finally got an appointment whit a GP next week who will then refer me to a Cardiologist. Until then I was told not to even go for a walk outside. "I still do it anyway but not for very long and always accompanied" It's just to catch some Sun and see the River!<br />
<br />
Low Blood pressure on the long run can affect all your organs from the lack of oxygen. Right now it's affecting my eye sight quite a bit. My prescription glasses don't work anymore and I'm constantly squinting so Even Blogging is an effort cause I can hardly see my screen!<br />
<br />
But as I wrote, it's just another challenge for me. It's a problem so automatically there has to be a solution.<br />
<br />
At least I'm at home and I don't have to go back to Montreal for 1 month and 1/2!<br />
<br />
My next post will be about tips and tricks I found but for now that's all the energy I have and my eyes are killing me!<br />
<br />
Thanks for reading.<br />
<br />
Never give up and Keep Fighting!<br />
<br />
YvonThe Myeloma Fighterhttp://www.blogger.com/profile/13967193310174306702noreply@blogger.com5tag:blogger.com,1999:blog-7811274701009089345.post-84744117578790050142011-02-21T17:31:00.000-05:002011-02-21T17:31:58.348-05:00Stem Cell Transplant Blog Day 18-19.....Travelling Back in time!Hello again!<br />
<br />
Traffic to the Blog has gone Wayyyy down. I feel like I'm letting people down for not posting everyday but I'm doing my best here ! Not going to give up!<br />
<br />
Anyway, let's pretend that we go back in time again. <br />
<br />
This is Feb 7 2011.<br />
<br />
Finally figured out why the diarrhea is still there. Acyclovir! Found out that the most common side effects are Nausea and diarrhea...Duh! I finally convinced the Doctor (after 4 days trying) to give me Imodium to slow things down.<br />
<br />
Besides that I slept most of the day. Didn't even watch TV or anything.<br />
<br />
Numbers for that day....Neutrophils for sale:<br />
<br />
WBC 7.54<br />
Hgb 110<br />
Platelets 39...rising!<br />
Neutrophils....8.92 (Normal range 1.6 to 7.7)<br />
<br />
Went to bed at 9 again and slept through the whole night!<br />
<br />
The next day Feb 8 2011, I woke up telling myself " Why the heck I'm I still here"<br />
<br />
So that was my first question for the Doctor that morning at 9AM. <br />
Answer: "Well, we want to make sure you eat enough".............WHAT???<br />
Are you kidding me I replied. You keep me here for that when everything here tastes like cardboard and expect me to eat enough. Well I put my foot down and said "I want to go home NOW!" My wife is a French Chef, I'll eat much better at home.<br />
<br />
The Doctor left with a strange look on his face! I was really pissed off (excuse my language).<br />
<br />
Numbers for that day:<br />
<br />
WBC 7.54.....Normal!<br />
<span style="background-color: white;">Hgb 110...a little low but not a problem!</span><br />
<span style="background-color: white;">Platelets 51.....still rising!</span><br />
<span style="background-color: white;">Neutrophils 6.09...back i the normal range!</span><br />
<br />
The Doctor came back at 11 after consulting with the other oncologists and said right away: You are going home today! We just need to ween you off the TPN and one more bag of Acyclovir. That should only take about 2 hours. Yahoooooo!<br />
<br />
Man was I happy. That was day 19 after admission! You can count this 3 ways as I see it. If I count it like the first time. That is from my first dose of Melphalan ( did not get Palifermin on my first Transplant, just Melphalan the day I was admitted) so that would be day 15, just 4 days more then my first Transplant. If you count it like they do, it's Day+11 after Transplant! Pretty good! <br />
We got home at 8:30PM. Haaaaa, the feeling was FANTASTIC. <br />
<br />
Everything seems so long when your in the Hospital but once you're out of there it seems like it went by in the blink of an eye! Felt very grateful. I admit, I cried I was so happy.<br />
<br />
That will be my post for today. <br />
<br />
Tomorrow Feb 22 is my check up day in Montreal 2 1/2 hours away. Missed the last one because of a snow storm. |So I'm not sure if I'll be Blogging or not. But my next Post will be on my first days at home and how we solved the Nausea and Diarrhea whit in 24 hours.<br />
<br />
Thanks for reading.<br />
<br />
Keep Fighting!<br />
<br />
YvonThe Myeloma Fighterhttp://www.blogger.com/profile/13967193310174306702noreply@blogger.com4tag:blogger.com,1999:blog-7811274701009089345.post-79216596048784400642011-02-18T13:37:00.000-05:002011-02-18T13:37:16.964-05:00Stem Cell Transplant Blog Day 17.....Travelling Back in time!Hi everyone!<br />
<br />
I'm finally awake! lol<br />
<br />
Man, I thought I was tired before, now I'm re-tired!!!<br />
<br />
Anyway, let's move back in time and pretend that it's Feb 6 2011.<br />
<br />
Wake up feeling like crap again and very tired. But cant wait to get my Blood Work results. Still feeling nauseous and have Diarrhea. Not much appetite but I eat fruit salads, yogurt and stuff like that. They decide to put me on TPN (<strong>total parenteral nutrition). See Wiki for more info: <a href="http://en.wikipedia.org/wiki/Parenteral_nutrition">http://en.wikipedia.org/wiki/Parenteral_nutrition</a></strong><br />
<br />
I dont really like the idea! Why I was put on this is because I do not eat enough according to them. No kidding!!! Well let me tell you that this is my 8th hospital stay in 8 different Hospitals and the food here is just truly AWFUL! It's all reheated stuff. And it's not just me. It's their no 1 complaint at this Hospital. The Hospital where I got my first transplant is just 1 mile away and I was told that the patients there eat an average of 30% more! No kidding!<br />
<br />
Great news though, Guess what my Neutrophils just 10 days after transplant are at? 6.23...Wow! 0.51 yesterday!<br />
<br />
And to say I had a talk with a nurse 2 days ago about my numbers climbing already and she said it would go back down, it was just a twitch. But I did not believe her, I know my body. Numbers Jumped up just like my first Transplant. Yahoooo!<br />
<br />
So, Blood counts:<br />
WBC 7.29<br />
Hgb 110<br />
Platelets 31 ....a little low!<br />
Neutrophils 6.23, Bingo!<br />
<br />
I slept through most of that day. My only thoughts were: I wanna go Home....... ET go home!<br />
<br />
Nothing much more happened that day. I knew I was on my way back and did it again. Felt Proud of myself!<br />
<br />
Went to bed at 9.<br />
<br />
Thanks for reading again.<br />
<br />
Catch you tomorrow for day 18.<br />
<br />
Keep Fighting!<br />
<br />
YvonThe Myeloma Fighterhttp://www.blogger.com/profile/13967193310174306702noreply@blogger.com1tag:blogger.com,1999:blog-7811274701009089345.post-33781247952276807142011-02-12T14:06:00.000-05:002011-02-12T14:06:17.957-05:00Stem Cell Transplant Blog, Back HomeHello everyone.<br />
<br />
Well, excuses, excuses, excuses! Sorry for not posting!<br />
<br />
Reason, well I got back home Tuesday night. Didn't sleep too well. Too happy to be home I guess. So on Wednesday I rested and slept between meals....Man it's good to be Home.<br />
Thursday was a FANTASTIC day spent with my 20 year old beautiful Daughter.<br />
Here is a Pic:<br />
<div class="separator" style="clear: both; text-align: left;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiYFzSVIxPWUSfc1rWVF7ribLomCpLgJZL8K8ff-4awxVehzO6Jff98zt3t4K2tYFfIabWhgKec1xKr42kRVqKfbAUBYZUJQVFF7cZTZa5EEqOWlL5QhkX1V7gThPOx8U0jv8dxkLcam2DR/s1600/Dobrina.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" h5="true" height="263" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiYFzSVIxPWUSfc1rWVF7ribLomCpLgJZL8K8ff-4awxVehzO6Jff98zt3t4K2tYFfIabWhgKec1xKr42kRVqKfbAUBYZUJQVFF7cZTZa5EEqOWlL5QhkX1V7gThPOx8U0jv8dxkLcam2DR/s320/Dobrina.jpg" width="320" /></a></div><div class="separator" style="clear: both; text-align: left;">She is my pride and Joy. But I over did it that day and ended up sleeping all day Friday and this morning too. Catching up on lost sleep from the Hospital I guess!</div><div class="separator" style="clear: both; text-align: left;"><br />
</div><div class="separator" style="clear: both; text-align: left;">So now I am re reading my notes to get everything in order to Blog about the rest of the Hospital stay and I will have some tips and tricks to share soon.</div><div class="separator" style="clear: both; text-align: left;"><br />
</div><div class="separator" style="clear: both; text-align: left;">Until then....Keep Fighting!</div><div class="separator" style="clear: both; text-align: left;"><br />
</div><div class="separator" style="clear: both; text-align: left;">I'm going for a nap again! ZZZZZZZZZzzzzzzzzzzzzzzzzz!</div><div class="separator" style="clear: both; text-align: left;"><br />
</div><div class="separator" style="clear: both; text-align: left;">Yvon</div>The Myeloma Fighterhttp://www.blogger.com/profile/13967193310174306702noreply@blogger.com3tag:blogger.com,1999:blog-7811274701009089345.post-46920091002410316642011-02-10T08:57:00.000-05:002011-02-10T08:57:58.416-05:00Stem Cell Transplant Blog, Back HomeHello Everyone.<br />
<br />
This is just a quick post to let you know that I've been back home since Tuesday 8:30PM.<br />
<br />
I not going to blog much more today as I have my 20 year old daughter who is coming to visit. I do not see her very often so I wont spend my time on the computer.<br />
<br />
But please check back tomorrow for all the Juicy details from thew past 5 days.<br />
<br />
Keep Fighting! I did and I won again!<br />
<br />
YvonThe Myeloma Fighterhttp://www.blogger.com/profile/13967193310174306702noreply@blogger.com1tag:blogger.com,1999:blog-7811274701009089345.post-8310649257929988412011-02-05T15:13:00.000-05:002011-02-05T15:13:21.955-05:00Stem Cell Transplant Blog Day 16Wake up little Stem Cells...Wake up....I wanna go home!<br />
<br />
Well today still feeling like crap but!!! Neutrophils are on the rise...Hiiiiiii Haaaaaaaa!<br />
<br />
No need for platelets today . Still nauseous and very tired but the good news is Awesome.<br />
<br />
Counts for today:<br />
<br />
WBC 0.82<br />
Hemoglobin 106<br />
Platelets 38<br />
Neutrophils........0.50!<br />
<br />
I am also felling periods of lower back pain but that is a side effect from Neupogen. It's a good sign that it's doing it's job.<br />
<br />
Besides that, the rest of the day I rest,rest,rest! Very important.<br />
<br />
That's it for today. I know it's a short one but I'll catch up when the Brain end energy are a little better. Any day now!<br />
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I also have 237 emails in my inbox to take car of!<br />
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Thank you all for reading.<br />
<br />
Keep Fighting!<br />
<br />
YvonThe Myeloma Fighterhttp://www.blogger.com/profile/13967193310174306702noreply@blogger.com1tag:blogger.com,1999:blog-7811274701009089345.post-24912906319514976492011-02-04T16:25:00.000-05:002011-02-04T16:25:18.741-05:00Stem Cell Transplant Blog Day 13-14-15Hello to you all.<br />
<br />
First I'd like to apologies for not blogging for the past 3 days.<br />
Wednesday, no Internet connection because of the snow storm.<br />
Thursday, No Brain connection because numbers were so low. haha<br />
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And today, well I am receiving my first Platelet infusion of my life, I just see it as another life experience. The bag of platelets to my surprise if the color of Mango juice.<br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjpE-dOrymi16VrvS6deDrTvyPwPCxr6MPkVam-c44GMXoP-aY2n_feqwL4nr_4Z6qriTwf2t98PQwwz5UfPLuJq9MzLuRSdJp26Y6j_dVtk98V_P1BrOXFWkQ7VOD6az_HQ0U5kHZ-K1vl/s1600/mango.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" h5="true" height="306" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjpE-dOrymi16VrvS6deDrTvyPwPCxr6MPkVam-c44GMXoP-aY2n_feqwL4nr_4Z6qriTwf2t98PQwwz5UfPLuJq9MzLuRSdJp26Y6j_dVtk98V_P1BrOXFWkQ7VOD6az_HQ0U5kHZ-K1vl/s320/mango.jpg" width="320" /></a></div><br />
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Despite all of this. By this I mean all the nausea and diarrhea and tiredness. To my great joy I still make people laugh. I was told today that I was the funniest patient the Chaplin had ever met. By the way call him Charly..Chaplin! <br />
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Hopefully energy will be better tomorrow. As there are some subjects that I'd like to Blog about.<br />
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NEUTROPENIA:<br />
No it's not a far away Planet. It's when your Neutrophils are at their lowest. Yesterday the were at 0.01!<br />
So I'm Neutropenic.<br />
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Yesterdays numbers:<br />
WBC 0.15<br />
RBC 3.31<br />
Hgb 111<br />
Platelets 32<br />
Neurophils 0.01<br />
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Today<br />
WBC 0.21<br />
RBC 3.41<br />
Hgb 116<br />
Platelets 21<br />
Neutrophils 0.05<br />
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Moral still 200%.<br />
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That's all for today. Peace and Prosperity to you all Neutrophillians!<br />
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Keep Fighting!<br />
<br />
YvonThe Myeloma Fighterhttp://www.blogger.com/profile/13967193310174306702noreply@blogger.com0