Hi Tracy,
Good luck with this meeting! I'm rooting for you.
I'm assuming you already know from your insurance carrier that you can go straight to an allo instead of taking the auto/allo tandem transplant route that some insurance carriers mandate?
I'd also be asking:
When will I have a very good idea if the transplant has worked or not?
What would be my likely options if the transplant doesn't work? (assume that CAR-T isn't an option at the time).
What are your thoughts on maintenance therapy post-allo using either an IMiD or a PI (the data on maintenance therapy for post allo patients appears to be pretty limited)? If you do advocate maintenance, which drug(s) do you suggest?
Forums
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Decision time - should I do an allo transplant?
I e-mailed Dr. Cohen regarding the possibility of CAR-T after allo, and here was his response. Essentially you all were right when you said that allos exclude patients from participating in CAR-T trials right now, but not necessarily from all future CAR-T treatments. This is, of course, quite understandable. The theoretic safety concerns are not small. However, as many of you have noted, there have been CAR-T trials with post-allo leukemia or lymphoma patients (thanks, smart people!) Dr. Cohen pointed out that significant GVHD has not been reported in these patients. It’s possible that future CAR-T trials will allow post-allo patients, but that will be a characteristic unique to each individual trial that would need to be investigated.
So I had indeed misunderstood what he had said during our appointment. I’m so glad I had an opportunity to clear that up with him, since one of my primary concerns was that by doing an allo, I would be closing the door on a very promising future treatment.
Note: this post has been edited to remove direct quotes from Dr. Cohen, and instead paraphrase and summarize our e-mail exchange.
So I had indeed misunderstood what he had said during our appointment. I’m so glad I had an opportunity to clear that up with him, since one of my primary concerns was that by doing an allo, I would be closing the door on a very promising future treatment.
Note: this post has been edited to remove direct quotes from Dr. Cohen, and instead paraphrase and summarize our e-mail exchange.
Last edited by Tracy J on Wed Nov 18, 2015 5:37 pm, edited 1 time in total.
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Tracy J - Name: Tracy Jalbuena
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 2014
- Age at diagnosis: 42
Re: Decision time - should I do an allo transplant?
Multibilly,
Great questions. I've added them to my list. I've also added:
What is the immunosuppressive regimen post-allo?
Are there other promising treatments (besides CART) on the horizon that an allo would exclude me from?
Thanks.
Great questions. I've added them to my list. I've also added:
What is the immunosuppressive regimen post-allo?
Are there other promising treatments (besides CART) on the horizon that an allo would exclude me from?
Thanks.
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Tracy J - Name: Tracy Jalbuena
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 2014
- Age at diagnosis: 42
Re: Decision time - should I do an allo transplant?
It's great seeing how you are preparing for this decision, Tracy. Reading about how you're getting your questions for your doctors together is instructive and a good example for all of us who will be facing difficult decisions somewhere down the line. Thanks.
And best of luck. You know we're all pulling for you!
And best of luck. You know we're all pulling for you!
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Mike F - Name: Mike F
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: May 18, 2012
- Age at diagnosis: 53
Re: Decision time - should I do an allo transplant?
Just a few more thoughts on the topic of a myeloma patient that chooses to do an allo transplant early in disease course. This is not directed at TracyJ personally, just anyone considering an early allo. In my opinion the patient is the most important component of the entire transplant process. They have to follow doctors orders, convey what side effects they have, keep a positive attitude during the treatment/recovery period, etc.
I think a good thing to do is read Cindy's thread ("My mini-allo transplant journey", started April 8, 2015) and answer honestly if you think you could maintain the attitude she maintained during the process. Note her posts in other threads about what all she went through to get to a low tumor burden before the transplant. If a patient thinks they have the kind of fortitude Cindy has, an early allo may be for them. If not, early allo is likely not the right therapy path for that patient.
Another great example of the mindset of a patient that does an early allo transplant can be seen in the thread "Allo transplantation - what are your thoughts?" (started Sep 30, 2014). I asked a patient that was in a clinical trial that used Revlimid maintenance post allo why she was using Revlimid maintenance after it had caused some acute GVHD.
Here is how she responded:
Thinking long term as opposed to short term. If a patient does not have that kind of mindset, an early allo is probably not the right therapy for them.
Note the first reason KarenH lists for doing the allo early: "1.The gift of a good match". You constantly see me praising my donor for giving me the opportunity to enjoy my drug free remission / excellent quality of life. If a patient does not think like that, they should not put the donor through all the tests, etc they have to go through. They can take a significant amount of time for the potential donor.
I realize those of us that choose the early allo are in a very small minority, so please do not view this as my criticizing the large majority that do not make the same decision we made. Early allo transplant is definitely not for every young patient.
I think a good thing to do is read Cindy's thread ("My mini-allo transplant journey", started April 8, 2015) and answer honestly if you think you could maintain the attitude she maintained during the process. Note her posts in other threads about what all she went through to get to a low tumor burden before the transplant. If a patient thinks they have the kind of fortitude Cindy has, an early allo may be for them. If not, early allo is likely not the right therapy path for that patient.
Another great example of the mindset of a patient that does an early allo transplant can be seen in the thread "Allo transplantation - what are your thoughts?" (started Sep 30, 2014). I asked a patient that was in a clinical trial that used Revlimid maintenance post allo why she was using Revlimid maintenance after it had caused some acute GVHD.
Here is how she responded:
"It is a difficult decision whether or not to take the Revlimid for a year's maintenance. I'm like you, a big reason to do the allo is to have drug-free remission, and maybe cure. And though there is a higher than average relapse rate post allo in the first year or two, as you say study data is not there for those in first CR going into the allo. I guess it is one of the questions the trial I am part of might highlight.
I can still decide to stop the Revlimid if I want to, I would just have to withdraw from the trial though, but for now I'm going to continue with it. It's a low dose and I think of it as a short-term pain for long-term gain. But like many treatment choices with multiple myeloma, I just don't know what is best, if I am doing any harm taking the Revlimid. But I'm certainly happy right now that I've done the allo."
Thinking long term as opposed to short term. If a patient does not have that kind of mindset, an early allo is probably not the right therapy for them.
Note the first reason KarenH lists for doing the allo early: "1.The gift of a good match". You constantly see me praising my donor for giving me the opportunity to enjoy my drug free remission / excellent quality of life. If a patient does not think like that, they should not put the donor through all the tests, etc they have to go through. They can take a significant amount of time for the potential donor.
I realize those of us that choose the early allo are in a very small minority, so please do not view this as my criticizing the large majority that do not make the same decision we made. Early allo transplant is definitely not for every young patient.
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Mark11
Re: Decision time - should I do an allo transplant?
I know many of you are wondering what happened when James and I traveled to Dana Farber this past week to discuss a potential donor for an allogeneic stem cell transplant.
We had a long conversation with Dr. Koreth about this potential donor. It turns out this donor is not a perfect match, but rather he matches only 7/8 HLA markers. I wasn't aware that the HLA markers are not equally important. Some are more prognostic than others. This particular donor mismatches me on an important marker.
Because of that, the risk of the procedure would be increased. With this donor in particular, I would have about 20% (or maybe a little higher) chance of dying from the transplant itself. Also because of the poor match, the chance of long-term remission from the transplant would be decreased from about 30% to about 22% or so. Dr. Koreth said that the chance of long-term remission decreases by about 8% for every mismatched HLA, generally speaking. The result is that the treatment-related mortality is about the same as the chance of a long-term remission from the procedure.
Plus, if I take this match, I cannot then take a better match, should it come along. In addition, if I take this match, I will not be able to enroll in a CAR-T clinical trial.
The final decision about whether or not to take this match will not need to be made until February, so we have quite a bit of time to think about it. But I probably won't do it.
Pros
- 20% long term remission
Cons
- 20% treatment-related mortality
- Closes the door to a better match
- Closes the door to CAR-T treatments
It doesn't seem worth it. But what a terrible decision to have to make. What a roller coaster. We are hanging on though.
So now the plan is to finish 8 cycles of cyclophosphamide, pomalidomide and dex, which will take me through the end of February. Then I'll have complete re-staging - PET, biopsy, all the labs. If there is evidence of disease, I will probably qualify for one of the CAR-T trial. If there is NO evidence of disease, I will need to decide between maintenance therapy and this match / allo. I will probably choose maintenance.
Weirdly, I feel pretty good. Admittedly, we were stunned after having gone on such a crazy emotional roller coaster ride. But now my spirits are high and I feel okay physically. Carry on.
We had a long conversation with Dr. Koreth about this potential donor. It turns out this donor is not a perfect match, but rather he matches only 7/8 HLA markers. I wasn't aware that the HLA markers are not equally important. Some are more prognostic than others. This particular donor mismatches me on an important marker.
Because of that, the risk of the procedure would be increased. With this donor in particular, I would have about 20% (or maybe a little higher) chance of dying from the transplant itself. Also because of the poor match, the chance of long-term remission from the transplant would be decreased from about 30% to about 22% or so. Dr. Koreth said that the chance of long-term remission decreases by about 8% for every mismatched HLA, generally speaking. The result is that the treatment-related mortality is about the same as the chance of a long-term remission from the procedure.
Plus, if I take this match, I cannot then take a better match, should it come along. In addition, if I take this match, I will not be able to enroll in a CAR-T clinical trial.
The final decision about whether or not to take this match will not need to be made until February, so we have quite a bit of time to think about it. But I probably won't do it.
Pros
- 20% long term remission
Cons
- 20% treatment-related mortality
- Closes the door to a better match
- Closes the door to CAR-T treatments
It doesn't seem worth it. But what a terrible decision to have to make. What a roller coaster. We are hanging on though.
So now the plan is to finish 8 cycles of cyclophosphamide, pomalidomide and dex, which will take me through the end of February. Then I'll have complete re-staging - PET, biopsy, all the labs. If there is evidence of disease, I will probably qualify for one of the CAR-T trial. If there is NO evidence of disease, I will need to decide between maintenance therapy and this match / allo. I will probably choose maintenance.
Weirdly, I feel pretty good. Admittedly, we were stunned after having gone on such a crazy emotional roller coaster ride. But now my spirits are high and I feel okay physically. Carry on.
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Tracy J - Name: Tracy Jalbuena
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 2014
- Age at diagnosis: 42
Re: Decision time - should I do an allo transplant?
Tracy,
I feel for you. It is so hard to come to a decision and then, when you do have some new knowledge, turn everything around again. I would have trust in Dana Farber's knowledge, but if you want more info (which sometimes makes decisions harder), I do know Thomas Jefferson hospital in Philadelphia and Johns Hopkins in Baltimore have had success with half matches.
I feel for you. It is so hard to come to a decision and then, when you do have some new knowledge, turn everything around again. I would have trust in Dana Farber's knowledge, but if you want more info (which sometimes makes decisions harder), I do know Thomas Jefferson hospital in Philadelphia and Johns Hopkins in Baltimore have had success with half matches.
Re: Decision time - should I do an allo transplant?
Tracy -
You're putting a lot of work into this decision. You've educated yourself well and you've lined up the various pros and cons. I think that's all any of us can do in such a situation. Therefore, I hope that once February comes and you take whichever course you choose, that you don't look back.
Whatever happens, you've done everything anyone could do in such a situation and there is no point in ever second guessing yourself when you've covered the bases as thoroughly as you have.
Best wishes, allo tranplant or no allo transplant!!!
You're putting a lot of work into this decision. You've educated yourself well and you've lined up the various pros and cons. I think that's all any of us can do in such a situation. Therefore, I hope that once February comes and you take whichever course you choose, that you don't look back.
Whatever happens, you've done everything anyone could do in such a situation and there is no point in ever second guessing yourself when you've covered the bases as thoroughly as you have.
Best wishes, allo tranplant or no allo transplant!!!
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Mike F - Name: Mike F
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: May 18, 2012
- Age at diagnosis: 53
Re: Decision time - should I do an allo transplant?
Thank you, Tracy, for sharing your hard decisions and everyone else for your useful replies. I learned today I may be faced with this difficult decision in the near future. Things are going well in my current (2nd line) treatment of Kyprolis, Pomalyst, and dex, but I have the del(17p) risk factor and auto/allo is being put on the table. While this type of decision is ultimately very personal, and I believe there is no "right" answer, seeing how others face this type of decision is very useful.
Thank you for your bravery in sharing. Good luck with your journey.
Thank you for your bravery in sharing. Good luck with your journey.
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Mark Pouley - Name: Mark
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: April 2015
- Age at diagnosis: 53
Re: Decision time - should I do an allo transplant?
Mark,
Wow, good luck making the decision if it comes to that. Far and away, it was the most difficult decision I've ever had to make. The stakes are so high, and so many crucial pieces of information cannot be known ahead of time. And yet a decision must be made.
Good luck. I'll be following along as things progress for you!
Tracy
Wow, good luck making the decision if it comes to that. Far and away, it was the most difficult decision I've ever had to make. The stakes are so high, and so many crucial pieces of information cannot be known ahead of time. And yet a decision must be made.
Good luck. I'll be following along as things progress for you!
Tracy
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Tracy J - Name: Tracy Jalbuena
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 2014
- Age at diagnosis: 42
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