C’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.
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.



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.
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.

Cryoglobulinemia What is it and how it affects some Multiple #Myeloma patients!

Cryoglobulinemia

    

Cryoglobulinemia is the presence of abnormal proteins in the blood. These proteins thicken in cold temperatures.

Causes

Cryoglobulins are antibodies. 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.

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 antibody that is produced:

• Type I
• Type II
• Type III

Types II and III are also referred to as mixed cryoglobulinemia.

Type I cryoglobulinemia is most often related to cancer of the blood or immune systems.

Types II and III are most often found in people who have a chronic (long-lasting) inflammatory condition, such as an autoimmune disease or hepatitis C. Most people with this form of the disease have a chronic hepatitis C infection.

Other conditions that may be related to cryoglobulinemia include:

• Leukemia
• Multiple myeloma
• Mycoplasma pneumonia
• Primary macroglobulinemia
• Rheumatoid arthritis
• Systemic lupus erythematosus

Symptoms

Symptoms will vary depending on the type of disorder you have and the organs that are involved. Symptoms may include:

• Breathing problems
• Fatigue
• Glomerulonephritis
• Joint pain
• Muscle pain
• Purpura
• Raynaud's phenomenon
• Skin death
• Skin ulcers

Exams and Tests

Treatment

Mixed cryoglobulinemia (Types II and III)

Mild or moderate forms of cryoglobulinemia can often be treated by taking steps to deal with the underlying cause.

• Mild cases can be treated by avoiding cold temperatures.
• Standard hepatitis treatments work for most people who have hepatitis C and mild or moderate disease. The condition can come back when treatment stops.

Severe cryoglobulinemia involves vital organs or large areas of skin. It is treated with corticosteroids and other medicines that suppress the immune system.

• Rituximab is an effective drug and has fewer risks than other medicines.
• Cyclophosphamide is used in life-threatening conditions where rituximab is not working or available. This medicine was used often in the past.
• 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.

Type I cryoglobulinemia:

This disorder is due to a cancer of the blood or immune system such as multiple myeloma. Treatment is directed against the abnormal cancer cells that produce the cryoglobulin.

Outlook (Prognosis)

Most of the time, mixed cryoglobulinemia does not lead to death. Outlook can be poor if the kidneys are affected.

Possible Complications

Complications include:

• Bleeding in the digestive tract (rare)
• Heart disease (rare)
• Infections of ulcers
• Kidney failure
• Liver failure
• Skin death
• Death

When to Contact a Medical Professional

Call your health care provider if:

• You develop symptoms of cryoglobulinemia.
• You have hepatitis C and develop symptoms of cryoglobulinemia.
• You have cryoglobulinemia and develop new or worsening symptoms.

$10.00 donation to CIBMTR and ASBMT for every 10 Tweets and Retweets which include the Hashtags #IMambo4Myeloma and #BMTTandem16

#IMamboforMyeloma is going to #BMTTandem16! 

To help raise #MultipleMyeloma 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 Honolulu, Hawaii, February 18th through February 22nd.

Sanofi Genzyme will make a $10.00 donation to CIBMTR and ASBMT for every 10 Tweets and Retweets which include the Hashtags #IMambo4Myeloma 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 Sanofi Genzyme on Twitter @SanofiGenzyme

Our #myeloma awareness initiative continues to BUILD a bridge for raising funds!

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.

There is NO limit to the amount of times you can tweet and retweet this photo and the #IMambo4Myeloma #MBTTandem16 Hashtags! Please HELP !!

I want to wish to all my fellow Multiple #Myeloma Fighters a Happy Valentines day!

Sean’s Burgundy Thread on Multiple #myeloma!: Give Me A K!

Sean’s Burgundy Thread: Give Me A K!

2 CommentsBy Sean Murray 
Published: Feb 10, 2016 11:49 am

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.

Sensitive, level-headed guys, my friends are.

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.

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.

They dared me.

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.

They triple-dog dared me.

Great! Everybody knows that you can never back down from a triple-dog dare, even if you have multiple myeloma.

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!”

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:

K

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.

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.

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.

K is for KAHLER.

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.

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.

That’s Kahler with a K.

K is for KYPHOPLASTY.

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.

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.

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.

Thankfully, an interventional radiologist came to the rescue. He and his team performed three successful kyphoplasties.

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.

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.

K is for KYTRIL.

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!

K is for vitamin K.

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.

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.

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.

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.

Yay pills, boo stomach shots.

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.

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.

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.

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.

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.

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.

As they say, Keep on Keeping On out there in Myelomaville!

Sean Murray is a multiple #myeloma patient and columnist at The Myeloma Beacon. You can view a list of his columns here.

If you are interested in writing a regular column to be published by The Myeloma Beacon, please contact the Beacon team at info@myelomabeacon.com.

Photo of Sean Murray, monthly columnist at The Myeloma Beacon.