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Re: Stem cell transplant - why or why not?
This is a good thread on the topic and helped to start to shape my philosophy on treatment options going forward. https://myelomabeacon.org/forum/looking-for-feedback-on-recommended-first-round-treatment-t1502.html
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Stem cell transplant - why or why not?
I am curious Billy, if you care to share, what you decided to do?
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goldmine848 - Name: Andrew
- When were you/they diagnosed?: June 2013
- Age at diagnosis: 60
Re: Stem cell transplant - why or why not?
> I am curious Billy, if you care to share, what you decided to do?
Before I launch into a recap (I took a break from this forum for a few months, but folks that have been on it for awhile know which SCT camp I'm in), let me say that everyone is different and I respect those that opt for a stem cell transplant. In any case, you need to make the choice yourself and the best way to do that is to thoroughly educate yourself and talk to at least a couple of different myeloma experts (including those not affiliated with transplant centers) to get a good, balanced perspective.
I am IgG Lambda SMM. I am also currently asymptomatic (by definition of SMM) and have good cytogenetics, so I currently don't require treatment by anyone's standard. I'm just doing my homework should I progress or if a more benign treatment regime becomes available to smoldering patients (i.e. a monoclonal antibody or vaccination with little or no side effects). In the meantime, I'm currently trying to continue to hold the disease at bay through diet, exercise and supplementation.
I have basically come to loosely embrace Dr. Berenson's philosophy (he is one of my doctors, although not the main oncologist I see every few weeks for my routine tests). In a nut, that philosophy is while stem cell transplants used to be the only game in town, that has completely changed with the advent of the new treatment regimes out there, and the exciting new drugs on the horizon. While Berenson has said to me that he would never currently consider a transplant under any circumstances for any of his patients, I would not rule it out as a salvage therapy, depending on my circumstances at the time. For me, by the time I would become refractory and require a salvage approach, the current choice of drugs will likely be very different than it is today, so who really knows what I would do at that stage?
In any case, I would personally give a few different drug regimes and/or trials a whirl before considering an SCT. Also, if I were were high risk (I'm not) smoldering, I would likely not opt for the current chemo choices for high-risk SMM being investigated at this point for all the reasons outlined in the thread I posted earlier (peripheral neuropathy, chemo brain, lifestyle impact of having to receive chemo, etc). For me, hiking and traveling with my wife is the true joy in my life, so these side effects weigh heavily in my decision process.
Dr. Berenson is admittedly on one extreme end of the SCT continuum, while UAMS and some other docs are on the other end. The Mayo clinic has recently shifted more towards the center of that continuum in that they are now recommending giving the new drugs a shot before considering an SCT, at least in many circumstances.
Hope this helps.
Before I launch into a recap (I took a break from this forum for a few months, but folks that have been on it for awhile know which SCT camp I'm in), let me say that everyone is different and I respect those that opt for a stem cell transplant. In any case, you need to make the choice yourself and the best way to do that is to thoroughly educate yourself and talk to at least a couple of different myeloma experts (including those not affiliated with transplant centers) to get a good, balanced perspective.
I am IgG Lambda SMM. I am also currently asymptomatic (by definition of SMM) and have good cytogenetics, so I currently don't require treatment by anyone's standard. I'm just doing my homework should I progress or if a more benign treatment regime becomes available to smoldering patients (i.e. a monoclonal antibody or vaccination with little or no side effects). In the meantime, I'm currently trying to continue to hold the disease at bay through diet, exercise and supplementation.
I have basically come to loosely embrace Dr. Berenson's philosophy (he is one of my doctors, although not the main oncologist I see every few weeks for my routine tests). In a nut, that philosophy is while stem cell transplants used to be the only game in town, that has completely changed with the advent of the new treatment regimes out there, and the exciting new drugs on the horizon. While Berenson has said to me that he would never currently consider a transplant under any circumstances for any of his patients, I would not rule it out as a salvage therapy, depending on my circumstances at the time. For me, by the time I would become refractory and require a salvage approach, the current choice of drugs will likely be very different than it is today, so who really knows what I would do at that stage?
In any case, I would personally give a few different drug regimes and/or trials a whirl before considering an SCT. Also, if I were were high risk (I'm not) smoldering, I would likely not opt for the current chemo choices for high-risk SMM being investigated at this point for all the reasons outlined in the thread I posted earlier (peripheral neuropathy, chemo brain, lifestyle impact of having to receive chemo, etc). For me, hiking and traveling with my wife is the true joy in my life, so these side effects weigh heavily in my decision process.
Dr. Berenson is admittedly on one extreme end of the SCT continuum, while UAMS and some other docs are on the other end. The Mayo clinic has recently shifted more towards the center of that continuum in that they are now recommending giving the new drugs a shot before considering an SCT, at least in many circumstances.
Hope this helps.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
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