Dear Beacon community,
If anyone has any useful comments concerning the following decision, it would be much appreciated. (I apologize in advance to those people who don't so much like people bringing up individual cases like this.)
Background:
Diagnosed Dec, 2014 at 54.
Deletion 17p (53% by FISH)
VGPR after 3 cycles of VCD induction (M-comp. down from 35 g/L to 3 g/L)
April, 2015 proceeded to SCT auto where M-comp went to 1 g/L in June.
July, 2015 started Velcade maintenance and M-comp then went to under 0.5 g/L
FLC 5000 mg/L at diagnosis, now down to 40 mg/L
No comorbidities; in reasonably good physical shape.
Question: Is it better to
(1) do an allo right away, about one year after auto (but still before first relapse)
or
(2) do an allo at first relapse.
(I am not asking the also very difficult question about doing the allo at all).
Comments:
I know
(1) there have been very many discussions concerning allos
(2) there are absolutely no clear answers or guidelines for this question
and
(3) allos early on are much more effective than later on (in which case
the question is "is first relapse still reasonably early enough").
Thanks for any feedback!
Ping
Forums
5 posts
• Page 1 of 1
Re: Allo now or at first relapse?
Hello, Ping:
I think you have asked a very reasonable question. I do not know the answer the question. At the end of the day, its got to be your call.
I will say, however, that if you decide to do an allo, make sure that you go to TOP TOP TOP tier center for the procedure. Arguably, the early mortality risk is in the 10% range at the "best of the best". At the tier 2 facilities, it is in the range of 20% plus. So my comment to you is to learn the odds, understand the odds, and play the odds. Good luck to you.
I think you have asked a very reasonable question. I do not know the answer the question. At the end of the day, its got to be your call.
I will say, however, that if you decide to do an allo, make sure that you go to TOP TOP TOP tier center for the procedure. Arguably, the early mortality risk is in the 10% range at the "best of the best". At the tier 2 facilities, it is in the range of 20% plus. So my comment to you is to learn the odds, understand the odds, and play the odds. Good luck to you.
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JPC - Name: JPC
Re: Allo now or at first relapse?
Hi Ping,
I hope all is well with you.
If you are still there, I am curious what you think you would be gained by delaying the transplant. If you think you will need to do one, is there a clinical endpoint you think is improved by delaying? The three main endpoints I look at are overall survival (OS), progression-free survival (PFS), and long term quality of life (QOL). I do not think I have ever seen a study that shows an improvement in any of those areas by delaying the transplant beyond first remission.
Mark
I hope all is well with you.
If you are still there, I am curious what you think you would be gained by delaying the transplant. If you think you will need to do one, is there a clinical endpoint you think is improved by delaying? The three main endpoints I look at are overall survival (OS), progression-free survival (PFS), and long term quality of life (QOL). I do not think I have ever seen a study that shows an improvement in any of those areas by delaying the transplant beyond first remission.
Mark
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Mark11
Re: Allo now or at first relapse?
When discussing transplants with the specialists they will all tell you the same thing. You do the transplant when you have achieved the best results possible from treatment. The closer to normal the better the results from the transplant.
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JBarnes - Name: Jerry Barnes
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: Aug 17, 2012
- Age at diagnosis: 54
Re: Allo now or at first relapse?
Thanks JPC, Mark and JBarnes for your comments.
Mark:
One doctor I consulted thought that since it was not being done as an auto-allo plan from the beginning, it didn't make logical sense to do this before first relapse. However, other doctors I have consulted did not indicate this.
Perhaps the only advantage of delaying is that, should the allo go REAL bad for me, at least this would give me time until first relapse.
But I understand your point that one does better ON AVERAGE with respect to all the endpoints you mentioned by not delaying.
And I agree, as both you and JBarnes say (and everything I read) that an allo is by far most effective when done early on and when the patient has low tumor burden.
On a different issue, I have actually not decided whether I do the allo or not, the only reason for doing it being the deletion 17p issue. But I didn't want to ask this question (which is in fact even more important) in my discussion as there have been very many forum discussions on "whether to do an allo", (many of which involved you, Mark) and this is a much more difficult question.
Thanks again, Ping
Mark:
One doctor I consulted thought that since it was not being done as an auto-allo plan from the beginning, it didn't make logical sense to do this before first relapse. However, other doctors I have consulted did not indicate this.
Perhaps the only advantage of delaying is that, should the allo go REAL bad for me, at least this would give me time until first relapse.
But I understand your point that one does better ON AVERAGE with respect to all the endpoints you mentioned by not delaying.
And I agree, as both you and JBarnes say (and everything I read) that an allo is by far most effective when done early on and when the patient has low tumor burden.
On a different issue, I have actually not decided whether I do the allo or not, the only reason for doing it being the deletion 17p issue. But I didn't want to ask this question (which is in fact even more important) in my discussion as there have been very many forum discussions on "whether to do an allo", (many of which involved you, Mark) and this is a much more difficult question.
Thanks again, Ping
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ping - Name: ping
- When were you/they diagnosed?: December, 2014
- Age at diagnosis: 54
5 posts
• Page 1 of 1