[vicstir]

Allo transplantation - what are your thoughts?

by vicstir on Tue Sep 30, 2014 2:27 am

With statistically speaking 1 in 5 dying as a direct result of this procedure (according to my doctor), is it worth taking this risk to potentially have the best chance of a long remission if you don't die?

At this point, it isn't an option for me. However, it has been discussed as a future treatment option. -- provided of course there is a donor that is suitable.

A part of me thinks it's better to die quickly if it doesn't work than not take the risk and die slowly. I kind of don't see the point of living without quality.

Anyone have any thoughts or insights on this?

Yours Vicki

[Beacon Staff]

Re: Allo transplantation - what are your thoughts?

by Beacon Staff on Tue Sep 30, 2014 3:07 am

Thanks for your question, Vicki. This could spark an interesting discussion.

We have some data that may be relevant to the discussion, and also a request.

First, the data.

The most recent U.S.-wide data on transplant survival in myeloma patients is for transplants conducted in the period 2003-2008. The data are from the U.S. Department of Health and Human Services.

For allo transplants in myeloma, survival data are available only for patients under the age of 60 and who had HLA-matched sibling donors. Allo transplants in myeloma patients are not common in older myeloma patients (in the U.S.), and there are not enough data to generate survival data for allo transplants in myeloma patients done with donated cells from non-HLA matched siblings or unrelated donors.

In myeloma patients under the age of 60 who received stem cells from HLA-matched siblings, the 100-day survival was about 90%, the 1-year survival was 75%, and 3-year survival was about 55%.

For comparison's sake, the same survival data for myeloma patients under the age of 60 who received autologous (own) stem cell transplants was 98.5% (100 days), 92% (1 year), and 72% (3 years).

Please note that these data cover survival from all transplants of each type. There is no breakdown in the statistics to make it possible to see, for example, what the survival was among myeloma patients who received an allo transplant at relapse versus those who received it as part of their upfront therapy.

So comparisons of survival between allo and auto transplantation are not entirely fair. More of the allo transplant patients, for example, may be getting transplants at relapse, compared to the auto transplant patients. And survival generally can be expected to be lower for patients getting treatment at relapse rather than as their first line of therapy.

Next, our request.

If, as part of any response you post here, you wish to link out to publications or expert opinions related to this topic, please feel free to do so. As always, however, we would prefer if such links be to professional content, such as journal articles or medical reports in the popular or scientific press.

And it is always helpful if, when you link out to an article or report, you could summarize what is said in the article, or quote key summary content from it (for example, from the article's abstract, if it has one).

Thanks!

[JBarnes]

Re: Allo transplantation - what are your thoughts?

by JBarnes on Tue Sep 30, 2014 5:39 pm

I've heard the term "mini allo" being used by multiple myeloma specialist. What does that mean?

[Beacon Staff]

Re: Allo transplantation - what are your thoughts?

by Beacon Staff on Tue Sep 30, 2014 6:07 pm

Hi Jerry,

You can find an explanation of "mini" and "full" (or "myeloablative") allo transplants in this forum thread:

""Mini" Allo vs Allo," Beacon forum discussion started Jan 28, 2011

Here how we described it in that thread:

A mini-allo transplant (also known as a reduced-intensity or non-myeloablative allogeneic stem cell transplant) is one in which the conditioning regimen used to kill off the patient's cells in the bone marrow prior to stem cell transplantation doesn't fully kill off all of the bone marrow cells. The donor stem cells will then be mixed in with the patient's cells.

There is also an explanation at the National Cancer Institute's page about stem cell transplants,

http://www.cancer.gov/cancertopics/factsheet/Therapy/bone-marrow-transplant

(Go to point #15, "What is a “mini-transplant”?)

[vicstir]

Re: Allo transplantation - what are your thoughts?

by vicstir on Tue Sep 30, 2014 7:00 pm

Thanks Beacon for the stats.

Is it fair to assume that those who die after an allo transplant do so from the GVHD (graft-versus-host-disease), or is that misguided? Is there data on this -- i.e., what people actually die from?

I have read that allo is the closest thing to a cure. Are those who survive the allo and live 10 years plus the exception. Obviously less then half.

One more question: Is it fair to assume that most who receive an allo are otherwise refractory to begin with?

Thanks Vicki

[MattSchtick]

Re: Allo transplantation - what are your thoughts?

by MattSchtick on Tue Sep 30, 2014 10:16 pm

Hi Vicki, that's a scary topic you have brought up and probably one that nobody really wants to confront. It's like Russian Roulette but with worse odds, and if you choose not to play then you still die but more slowly.

During my induction therapy my specialist was voicing his concern at how aggressive my myeloma was, and how quickly the free light chain (FLC) numbers recovered, and was pondering what he had 'in the ammunition locker' to keep it under control after the auto stem cell transplant (SCT), when needed. On the way out of the door he casually asked me 'Do you have a full-blood sibling?'

I immediately knew why he was asking and what the consequences were from the hours of research I was putting in, and it chilled me to the core. I was only two months post diagnosis and he was already thinking allo at some stage in the future. I was pretty depressed when I left, and so was my full-blood sister when I told her (she loathes needles).

I don't have any answers for you, Vicki, or even any knowledge on the criteria for allo eligibility out here in Australia, but I'm right with you on the concern at those statistics. I somehow came to the conclusion that Australian allos were pretty much a last resort treatment, but that if an allo went well it could go really well, and if it went bad it could be really bad. I could very well be wrong.

My personal view on quality of life is that if you are staying alive but bedridden, suffering, a burden on loved ones and carers and the health system, and getting no pleasure out of life, and no prospect of improvement, then what is the purpose? Under those conditions, I would take the allo in a flash. The more difficult decision comes when you are feeling ok and life is not too bad, but the numbers are rising, options are limited, and the future is unclear and you have to choose. That is a situation I hope never to be in.

Good luck with the ongoing treatment Vicki, I sincerely hope they find something that works for you and this decision never has to be made.

[vicstir]

Re: Allo transplantation - what are your thoughts?

by vicstir on Tue Sep 30, 2014 10:34 pm

Hi Andy,

Thanks for your thoughts. I think we are thinking along the same lines. How are your levels after SCT. I hope they are better then mine.

My doctor did tell me that allo is a last resort option. I believe, however, that the "healthier" you are when you get it, the more chance you have of getting through a potential GVHD flair up.

So there's always a catch with this stinkin disease. Oh well, roll with the punches huh!

Take care.
Vic.

[Mark11]

Re: Allo transplantation - what are your thoughts?

by Mark11 on Wed Oct 01, 2014 10:42 am

Using an allo transplant in first complete response is far from "Russian Roulette". I am amazed at how little patients on this site know about allo transplantation. It amazes me how patients that have never done the procedure make negative comments about them like they do. I did my allo in first complete response and have been in a sustained molecular response (PCR negative) ever since. The studies are clear what this means:

Auto-allo approach in newly diagnosed multiple myeloma induces high rates of prolonged FullMR and StandardMR (up to 50%), similar to those reported after myeloablative allografting. MR significantly associated with better TTP and OS and increased during the first year post-allografting, clearly documenting the existence of an effective and persistent graft-vs-myeloma effect, potentially curative in a subset of patients."

(M Ladetto et al, "High Rates of Prolonged Molecular Remissions After Tandem Autologous-Nonmyeloablative Allografting in Newly Diagnosed Myeloma," ASH 2012 Annual Meeting Abstract #4204)

Those patients, who achieved molecular remission, have a high probability of long-term disease-freedom and of cure."

(N Kroeger et al, "Achievement of Sustained Molecular Remission Induces Long-Term Freedom From Disease After Autologous-Allogeneic Tandem Transplantation in Patients with Multiple Myeloma," ASH 2011 Annual Meeting Abstract #148)

I did a partially t cell depleted allo and I have an excellent quality of life as well. Studies show allo patients as having QOL on par with the general population.

Furthermore, the patients in both treatment groups returned to a functional level that approximated general US population norms."

(EM Altmaier et al, "The Effect of Unrelated Donor Marrow Transplantation on Health-Related Quality of Life: A Report of the Unrelated Donor Marrow Transplantation Trial (T-Cell Depletion Trial)," Biology of Blood and Marrow Transplantation, June 2006 (abstract, full text PDF).)

Most survivors beyond 5 years had an excellent performance status with no difference in physical and mental health and higher HRQL scores (P = .02) compared with population norms. Although physical and psychologic symptom distress was low, those with higher symptom distress experienced inferior HRQL. These results show that 5 or more years after T cell-depleted HSCT for hematologic malignancy most individuals survive disease free with an excellent performance status, preserved physical and psychological health, and excellent HRQL."

(RQ Lee et al, "Favorable outcomes in patients surviving 5 or more years after allogeneic hematopoietic stem cell transplantation for hematologic malignancies," Biology of Blood and Marrow Transplantation, August 2010 (abstract, full text PDF)

A potentially curative therapy with long term survivors having QOL on par with the general population. Why use that therapy in first complete response!?!?!?!?!??

Mark

[Multibilly]

Re: Allo transplantation - what are your thoughts?

by Multibilly on Wed Oct 01, 2014 11:51 am

For what it's worth, if I were a younger man and I were symptomatic, I would seriously investigate an allo. That's not to say I would necessarily go that route, but I wouldn't dismiss it out of hand. I would instead do some serious homework and talk to one or two allo specialists.

[Mike F]

Re: Allo transplantation - what are your thoughts?

by Mike F on Wed Oct 01, 2014 12:19 pm

Mark11 -

First off, congratulations on your excellent response to the allo transplantation! That's a great thing, and it illustrates the best outcome of that procedure. The potential for a functional cure is there, as you state. As far as I can tell, that's the only current treatment that offers such a possibility.

It's not something I'm going to do anytime in the near future, though. The potential of being killed or harmed by it is just too high given the good response I've had to Revlimid and an auto-SCT. I'm not cured, but the disease is (knock on lots of wood) being well-controlled and there has been little impact on my QOL.

While a cure would obviously be a great thing, the risk of dying from the allo procedure is just too high for me to justify it. That's illustrated by the fourth article you reference (Biol Blood Marrow Transplant. 2006 Jun;12(6):648-55.) They started out looking to interview 309 patients who had received allo-SCTs. After 6 months, there were only 137 who could be interviewed. As is stated in the article, "In the TCD HRQL study, most interviews are missing because of patient illness or death."

They don't state whether these folks died as a direct result of the treatment, from advancing disease, or from some other cause, but that's not a heartening statistic.

Furthermore, there's no guarantee that you'll get that curative response from an allo transplant if you do survive. According to a study titled "Long-term survival after allogeneic stem cell transplantation for advanced stage multiple myeloma" (Br J Haematol. 2014 Aug;166(4):616-8. doi: 10.1111/bjh.12881. Epub 2014 Apr 4.), the majority of those who received allo-SCTs did relapse at some point. Sixteen out of 37 did not achieve beyond a partial response.

My strategy, like many others', is to work to keep the disease under control as the next lines of therapy emerge, with the hope that it will be chronically manageable with little impact on my life. I will currently take that over getting an allo with the hope that I don't die from it or end up with some form of chronic GVHD that causes problems for me.

The allo's not off the table, mind you, but it's being held in reserve in case the current approach doesn't work out well at some point in the future (which is certainly a possibility).

While I completely agree with you that "Russian Roulette" is not a good analogy, the risk vs. reward calculation just doesn't work for me at this point. That's just me, of course, and everyone has to look at their own situation in making their treatment decisions.