I find that I am currently faced with this same decision. I am high risk, del 17p, multiple myeloma and have relapsed (become refractory to) all of the IMab's, IMIDs, PI's. I had an autologous stem cell transplant in June of 2013. I have been told that the only options available currently are the "true chemo" combos, bendamustine (Treanda) and Cytoxan (cyclophosphamide). I have experienced fairly severe side effects from many of the drugs protocols I've tried. My doctor is concerned about my ability to tolerate either of these options.
I have begun to wonder if a mini-allo might actually be a better choice at this point. I mean, if I'm going to have horrid side effects with, in all probability, minimal success time-wise, horrid side effects (including death) with the potential for longer overall survival and life expectancy might be a wiser choice.
However, I was just informed by my doctor that all mini-allos are done within the context of a clinical trial. This has not been my understanding.
Our finances severely limit our options as far as clinical trials or even facilities that focus on multiple myeloma treatment. Is it really true that mini-allos are only done in the context of a clinical trial?
Thank
Daniel
Forums
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DanielR - Name: Daniel Riebow
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: 12/2012
- Age at diagnosis: 59
Re: Decision time - should I do an allo transplant?
Hi DanielR,
You wrote: "I have begun to wonder if a mini-allo might actually be a better choice at this point."
There is no evidence a mini allo transplant will work on a myeloma patient that is relapsed / refractory to multiple lines of therapy. As someone who has had a successful allo transplant done when I was in first complete response (i.e., complete response after initial therapy), pursuing an allo transplant sounds like a very poor option given what you have written about your treatment history.
You also wrote: "I have experienced fairly severe side effects from many of the drugs protocols I've tried. My doctor is concerned about my ability to tolerate either of these options."
If your doctor is concerned about your ability to handle treatment, than any type of allogeneic transplant would seem to be a poor idea. You would need to pass multiple tests with respect to your current fitness. You will need some type of therapy to get you into remission prior to the transplant and you would most likely need some type of therapy after to allow the donor immune system time to strengthen while your tumor burden is low.
Finally, you wrote: "However, I was just informed by my doctor that all mini-allos are done within the context of a clinical trial. This has not been my understanding."
You would have to check with your insurance. I believe that Medicare would require a clinical trial in order to pay. I was not in a clinical trial when I did my allo. I doubt there would be any clinical trials currently available for myeloma patients in your current situation. It is an agreed upon principle of allo transplantation that it works best early in disease course and on patients in complete response (or close to it) at the time of transplant.
Note my response in this other thread.
"Salvage allogeneic (donor) stem cell transplant" (started Dec 7, 2016)
Mark
You wrote: "I have begun to wonder if a mini-allo might actually be a better choice at this point."
There is no evidence a mini allo transplant will work on a myeloma patient that is relapsed / refractory to multiple lines of therapy. As someone who has had a successful allo transplant done when I was in first complete response (i.e., complete response after initial therapy), pursuing an allo transplant sounds like a very poor option given what you have written about your treatment history.
You also wrote: "I have experienced fairly severe side effects from many of the drugs protocols I've tried. My doctor is concerned about my ability to tolerate either of these options."
If your doctor is concerned about your ability to handle treatment, than any type of allogeneic transplant would seem to be a poor idea. You would need to pass multiple tests with respect to your current fitness. You will need some type of therapy to get you into remission prior to the transplant and you would most likely need some type of therapy after to allow the donor immune system time to strengthen while your tumor burden is low.
Finally, you wrote: "However, I was just informed by my doctor that all mini-allos are done within the context of a clinical trial. This has not been my understanding."
You would have to check with your insurance. I believe that Medicare would require a clinical trial in order to pay. I was not in a clinical trial when I did my allo. I doubt there would be any clinical trials currently available for myeloma patients in your current situation. It is an agreed upon principle of allo transplantation that it works best early in disease course and on patients in complete response (or close to it) at the time of transplant.
Note my response in this other thread.
"Salvage allogeneic (donor) stem cell transplant" (started Dec 7, 2016)
Mark
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Mark11
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