Long time no Post! haha! Finally my eyes are getting better and the heart rate is slowing down! So that's good news!
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.
So here goes:
Hi Yvon,
I've been recently diagnosed with smoldering myeloma. (15% Bone Marrow infiltrated) I'm 34 with three small kids (1,3,5).
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,
till the myeloma will be active. So should better think about, what to do. 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? alpha [IgA], gamma [IgG], mu [IgM], delta [IgD], or epsilon [IgE]? What is your M spike? What is your 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!
I've been recently diagnosed with smoldering myeloma. (15% Bone Marrow infiltrated) I'm 34 with three small kids (1,3,5).
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,
till the myeloma will be active. So should better think about, what to do. 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? alpha [IgA], gamma [IgG], mu [IgM], delta [IgD], or epsilon [IgE]? What is your M spike? What is your 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!
I have some questions. Perhaps you could help me a bit, that would be great:
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? 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.
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?
I wake up and the first thing I have to think about is myeloma. 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!
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? 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!
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? 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!
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. ;-)
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? 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.
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?
I wake up and the first thing I have to think about is myeloma. 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!
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? 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!
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? 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!
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. ;-)
Of course it’s OK. That is what keeps me going, Helping others with the experience I’ve been through.
Thank you very, very much!!! 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.
Keep Fighting
Yvon Papillon
1 comment:
Good blog! I actually love how it is easy on my eyes as well as the details are well written. I am wondering how I could be notified whenever a new post has been made.
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