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Discussion about multiple myeloma treatments, stem cell transplants, clinical trials, alternative medicines, supplements, and their benefits and side effects.

Re: Controversies in the treatment of multiple myeloma

by Mark11 on Mon Feb 29, 2016 10:34 am

Hi JPC,

Fewer multiple myeloma patients receive stem cell transplants than you realize.

This paper gives data on the subject, broken down by age group.

LJ Costa et al, "Trends in Utilization and Outcomes of Autologous Transplantation as Early Therapy for Multiple Myeloma," Biology of Blood and Marrow Transplantation, November 2013 (full text of article)

It covers both the U.S. and Canada, but obviously the U.S. data will influence the results heavily just due to the population difference between the two countries.

For the latest period covered in the article (2005-2009), the percent of multiple myeloma patients getting a first transplant WITHIN 12 MONTHS OF THEIR DIAGNOSIS was:

35% - Patients less than 50 at diagnosis
27% - Patients 50-64 at diagnosis
4% - Patients 65 or older at diagnosis

For that same period, the percent of patients getting a first transplant AT ANY TIME, by age of diagnosis, was

47% - Patients less than 50 at diagnosis
40% - Patients 50-64 at diagnosis
7% - Patients 65 or older at diagnosis

So even among the youngest multiple myeloma patients, less than half are getting an autologous transplant at some point, and only about a third are getting a transplant as part of initial therapy.

Also, as you can tell from the paper, the number of stem cell transplants in the U.S. in multiple myeloma patients is nowhere near 10,000 per year. The most recent estimate that I've seen is for 2013, and it indicates about 6,400 multiple myeloma patients in the U.S. had an autologous transplant in that year, and that includes ALL autologous transplants (first, second, third, etc.).

(In case you're interested, I calculated the percentages listed above from the graphs in this figure.)

Mark11

Re: Controversies in the treatment of multiple myeloma

by Mark Pouley on Mon Feb 29, 2016 1:53 pm

Mark11 - I'm reading many of your contributions in several topics. Thank you so much.

It sounds as if our situations may be similar and I'm interested in learning about your experi­ence. If I'm correct you were diagnosed and have higher-risk cytogenetics. It also sounds like you did and auto/allo tandem?

That's the decisions I'm facing.

Mark Pouley
Name: Mark
Who do you know with myeloma?: Self
When were you/they diagnosed?: April 2015
Age at diagnosis: 53

Re: Controversies in the treatment of multiple myeloma

by JPC on Mon Feb 29, 2016 3:36 pm

Hello, Mark 11: First I think you posted a very interesting article about ASCT's with a ton of relevant and useful information to a person looking to make that decision. Thanks for that. I will be going through it (though at this stage my wife already had her ASCT).

I do not want to quibble too much over numbers (actually, at this point our initially widely disparate numbers are moving closer together), but one of the unfortunate things that I did learn, was that in the era before recent times (let's say before 2010), before when RVD and CyBorD were the standard of care, that even in the under 65 cohort, that A LOT of people could not make it to transplant because they never made it to be healthy enough. So when you get to about 45% of ALL the younger patients getting transplants, then the % of transplant eligible patients getting transplant, is still I think well over 50%.

With the novel agents and induction with RVD or CyBorD, the % of patients reaching VGPR or better is up like 70%. It can get the multiple myeloma under control to the degree that the person can regain a level of health and fitness. This opens the possibility of an ASCT more so than with the older regimens, some of which found it much harder to reach VGPR and PR. In my wife's case in 2014 we had discussions with the five biggest centers near us (close to NYC), and ASCT was on the table with all of them in terms of a possibility. So I think that even if a patient opts out, that it was an issue for most people who are transplant eligible, because they are faced with the decision.

Good luck to you.

JPC
Name: JPC

Re: Controversies in the treatment of multiple myeloma

by Mark11 on Thu Mar 10, 2016 3:16 pm

Hi Mark -

Thanks for the compliment. I did end up doing a tandem auto - allo but that was not the original plan. I was diagnosed back in 2010. I had multiple high risk factors, the worst of which was plasma cells circulating in my peripheral blood. At the time, and probably still today, that carried as bad of a prognosis as having full blown plasma cell leukemia. The positive for me was that all 3 myeloma specialists I consulted with agreed that I would likely go into a complete remission (CR) but that it would likely be very short.

The plan was to use Velcade-based triplets without using an IMID to get to CR and than do a partially t cell depleted allo transplant with myeloablative (full) conditioning. My insurance company only paid for a tandem auto - allo, so I ended up using the auto to get me to CR.

If you are looking into doing an allo, I would check if the doctor is planning on using ATG for prevention of extensive chronic graft-versus-host disease (GVHD). It worked great for me. I had an unrelated female donor and that is associated with a high risk of extensive chronic GVHD. I had very limited chronic GVHD for one month after discontinuing my immunosuppressive drugs. My current quality of life is excellent.

Hi JPC -

The rate of upfront auto transplant is rising, but note it started at such a low percentage that it is still uncommon for a myeloma patient to do one within the first year of diagnosis.

"Overall, 12,378 (9.0%) patients received AHCT as part of initial treatment. The use of upfront AHCT increased steadily from 5.2% in 1998 to 12.1% in 2010 (trend test, P < 0.001), with no sign of plateau."

(From the forum thread, "Autologous stem cell transplants in the United States," started Nov 11, 2015)

As overall survival is rising for myeloma patients, you would expect a therapy that increases overall survival to be rising as well. More effective induction therapies give more patients the opportunity to get the benefit from transplants.

As I have stated many times, I was very fortunate to have Velcade available to me for induction so I could do my potentially curative allo transplant in first complete response. The lower the disease burden, the better chance the patient has of being cured / having a long-term, drug-free remission. I am definitely enjoying the long treatment-free interval.

Mark11

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