[BradC]

Allogeneic versus autologous stem cell transplant

by BradC on Wed May 13, 2015 8:29 am

Hello,

I was diagnosed this past January with stage 1 multiple myeloma at the age of 43. I am cur­rent­ly in the 18th week of a 20-week trial consisting of Velcade, bendamustine (Treanda), and dexa­meth­a­sone.

My oncologist has presented me with the option of having an allogeneic stem cell transplant (SCT). My sister is a perfect match.

I was hoping to get some opinions from other multiple myeloma patients on the pros and cons of an allo transplant versus an autologous SCT.

Overall my health is good, including my kidneys. I have to make a decision and I am not sure which way to go.

Thanks

[TerryH]

Re: Allogeneic versus autologous stem cell transplant

by TerryH on Wed May 13, 2015 10:29 am

Hi Brad,

Choosing between an allo or an auto as upfront treatment is not an easy decision. You've already mentioned that you are young, which generally speaks in favor of the allo transplant option. There are, however, a couple of other things to consider.

For example, what sort of response have you had to your treatment so far? Do you still have an M-spike? How have your free light chain levels responded to the treatment?

Also, did you have any testing done before you started treatment to see what sort of chro­mo­somal abnormalities there are in your myeloma cells? If so, what did the testing show?

Another question that may be relevant is whether you have the option of doing an auto trans­plant followed by an allo transplant – in other words, two transplants, one after the other.

Sorry to answer your question with some more questions, I just think there are a number of things to consider when making this kind of decision.

[BradC]

Re: Allogeneic versus autologous stem cell transplant

by BradC on Wed May 13, 2015 11:03 am

Hi Terry,

Thank you for response! At the halfway mark (10 weeks into treatment), my protein levels were down almost 90% and my light chains were down significantly as well.

I had a bone marrow biopsy back in January which showed a result of 11:14 deletion 13Q. It is my understanding this is one of the more favorable abnormalities?

I did ask my oncologist about doing the auto with the possibility of an allo after at a later date. He advised that it was possible; however, the only thing he worried about was that the health of myself and the donor, which is ideal now, and could always change at a later date.

Unfortunately, the last 4 months have been a whirlwind. I was diagnosed, started immediate treat­ment, and now I am faced with the decision concerning the SCT, all the while experiencing the side effects of the chemo (chemo brain, fatigue) and myeloma (fatigue, bone pain), working full time, and running with three active kids under 15.

Thanks for your help,
Brad

[Mark11]

Re: Allogeneic versus autologous stem cell transplant

by Mark11 on Wed May 13, 2015 12:29 pm

Hi BradC,

If you would like to go back and search my posts under "Mark" and "Mark11" you will see many posts on this topic.

TerryH made some great points. Specific to what you mentioned about your case, your having a female donor is an important consideration. I had an unrelated female donor. For all blood cancers, including myeloma, the pair of female donor to male recipient is associated with re­duced risk of relapse but a higher incidence of extensive chronic GVHD. For that reason, I would be asking how your doctor is proposing to do your transplant.

I only had (very) limited chronic GVHD for one month after I got off my anti-rejection meds and have had no signs of GVHD since. I used a polyclonal antibody called ATG that is associated with a reduced risk of extensive chronic GVHD. I would ask your doctor what your risk of ex­tensive chronic GVHD is given how they are proposing to do the transplant. Mine was esti­mated at 10%, which was acceptable for me.

You wrote:

I did ask my oncologist about doing the auto with the possibility of an allo after at a later date. He advised that it was possible; however, the only thing he worried about was that the health of myself and the donor, which is ideal now, and could always change at a later date."

If what you mean by that is to do the allo after you relapse, allos are not nearly as effective after a patient has relapsed. One of the reasons it was a fairly easy decision for me to do the allo in first complete response is that I doubted that I could get back to CR after I relapsed, since I was a high risk patient and I have never seen any statistic that shows a positive enough outcome for me to consider doing an allo in a relapsed setting. There are some stories of myeloma patients who have had successful allos after they relapse, but the chances of a successful allo for a relapsed myeloma patient are low (10-20%).

If any of my previous posts do not answer any questions you have, I try and check in daily here at the Beacon.

Good luck moving forward!

Mark

[DuckJibe]

Re: Allogeneic versus autologous stem cell transplant

by DuckJibe on Wed May 13, 2015 6:29 pm

There are many unknowns in your case to answer your questions in a pertinent way. First off, ALWAYS get a second opinion from a myeloma expert, especially if you are considering an allo transplant. Are you in remission? What is the status of your response to date? CR, VGPR, PR?

You are doing the right thing asking questions in this forum. It is certainly NOT a decision to make lightly. I must say I am a bit concerned that your doctor is asking for an allo transplant, although I am not privy to your myeloma clinical status.

Good Luck,
Frank

[TerryH]

Re: Allogeneic versus autologous stem cell transplant

by TerryH on Wed May 13, 2015 9:00 pm

Hi Brad,

Mark is the allo expert around here, so he's given you some good feedback to consider. He's not only had an allo himself, but he's educated himself a lot about both multiple myeloma and allo transplants. He also has shared a lot of what he knows in many postings here in the forum.

Unfortunately ... it's not easy to find his postings. I've gotten pretty good at using the forum search feature, and it can do searches by user, but I don't think it works for unregistered mem­bers such as Mark. (Please, if I'm missing something, someone please tell me!) So the best way to find Mark's postings is to go this posting,

"Useful links to existing forum discussions"

and go down the page a little bit to the link labeled "Allogeneic (donor) transplantation". It will take you to most of the allo transplant-related discussions here in the forum, and you'll find lots of postings from Mark in those discussions.

When I asked about doing two transplants, I was thinking about an auto transplant followed quickly by an allo transplant. The auto transplant would (hopefully) get you deeper into re­mis­sion, and deep remissions apparently are important for the long-term success of an allo transplant.

I have some more thoughts on this that I'll post tomorrow, but I hope that both Mark and I have given you some food for thought in the meantime.

Good luck!

[LauraScot]

Re: Allogeneic versus autologous stem cell transplant

by LauraScot on Thu May 14, 2015 9:03 am

Hi Brad,

I recognise your description of the whirlwind and the difficulty in making a decision on allo. I was presented with the option of an allo about 4 months after diagnosis. My initial gut reaction was I was definitely going to do it. But the risks are considerable, and I thought long and hard about it, all while dealing with the diagnosis and chemo.

I decided to go ahead with a tandem auto and mini (or RIC) allo as part of a trial, after reading what I could. Finding data on it is difficult, I found, and most of it is out of date really – because treatments have improved so much.

I decided the potential benefits trumped the risks, I trusted my doctors were skilled and ex­perienced and were my best chance of getting through the allo. As I was in my 40's, I knew drugs and auto SCTs would only get me so far. Allo was an opportunity to get off drugs. For reasons Mark has said, a big factor in doing the allo upfront is it works better and is less risky then, and there is no guarantee I would have been able to have one later in my treatment.

I am coming up to my one year anniversary of my allo, and I am doing great. I had a small amount of GvHD after stopping immune suppressants. It was treated for a short time with steroids.

A small number of people never relapse after having an allo, and for me this allows me to live with the hope I might never relapse.

Good luck with your decision. I hope you post here and let us know what you decide, or other questions you have.

Best wishes,
Laura

[Tracy J]

Re: Allogeneic versus autologous stem cell transplant

by Tracy J on Thu May 14, 2015 9:11 am

I was 43 at the time of diagnosis last fall, and I also have school-aged children at home. I was also presented with the option of doing an allo. And, given what's at stake, I found it the most difficult decision I've ever made. It was a gut wrenching decision. Ultimately, I decided to go for it, but now I can't find a match. Neither of my siblings is a match, and the registry doesn't have one for me right now. So I wait.

My reasoning was this – The morbidity and mortality of an allo are high. But what is the morbidity and mortality of myeloma right now? Also very high. Because those are the choices, it's not as if you are choosing between health / no disease and an allo. You are choosing between myeloma with allo and myeloma without allo. You are very young and stand to gain A LOT if you are in the lucky group to get a "cure" from allo.

It's an excruciating decision and a very personal one.

[Dr. Jatin Shah]

Re: Allogeneic versus autologous stem cell transplant

by Dr. Jatin Shah on Thu May 14, 2015 10:08 am

An allo transplant is a major decision, unlike choices for induction therapy or auto transplant.

There must be a clear reason to do an allo, or something unique about your myeloma – such as high risk disease – to warrant a discussion of an allo transplant.

I would strongly recommend talking to several myeloma specialists and transplant specialists at centers with lots of experience with allo. Many centers may do allos, but there are a few that do more and have more experience, and I strongly encourage you to go to a center with significant experience in allo. There is significant risk of death in the first year and, with young children, this is life-changing treatment.

I understand the whirlwind you've been experiencing since diagnosis. However, you should not make such a decision by yourself, but with a team of physicians guiding you and partnering with you in the decision.

[TerryH]

Re: Allogeneic versus autologous stem cell transplant

by TerryH on Thu May 14, 2015 12:46 pm

Hi Brad,

Some of the points Dr. Shah makes are ones that I was trying to get at with my original questions, particularly the question about chromosomal abnormalities.

You've already mentioned that you are young for a myeloma patient. That, to me, is one set of special circumstances that suggests an allo might make sense. It means you are more likely to be fitter than older myeloma patients, which is important for an allo transplant. It also means that the potential payoff to an allo transplant, versus traditional therapy, is greater.

From what I read and hear, myeloma specialists also start to get more interested in the possibility of allo transplants for younger patients if they have higher-risk disease. The thinking is that, in that situation, taking on the risk of an allo is worth it, given that the alternative of pursuing traditional treatments is unlikely to provide as much a benefit as it would in lower-risk patients.

In your case, it sounds like you have the t(11;14) and del(13q) chromosomoal abnormalities. Both were probably determined through a FISH test. Unless you have other abnormalities you have not mentioned, this would mean that your disease is considered standard risk in the Mayo Clinic's "MSmart" risk classification, which you can read here: http://tinyurl.com/nzv2jju .

(I believe that del(13q) as determined by FISH testing does not put you in the intermediate category; only del(13q) determined by the older "metaphase" test would put you in the intermediate category. But I'm not an expert on these sorts of tests, so this is something others may want to comment on, and which you probably should check with your doctor.)

In any case, given your risk status, it's not clear that many myeloma specialists would urge you to consider an allo transplant. With standard risk disease, you could be looking at 10+ years of survival with current treatments and other treatments that will be available soon. If that's the case, is the risk of an allo worth it?

I do think you should get advice on this subject from someone who really specializes in the diagnosis and treatment of myeloma. Is your current doctor a myeloma specialist? If not, if you let us know where you live, we can give you some suggestions for myeloma specialists and treatment centers near you. We also can suggest major centers that are likely to have more experience with allo transplantation -- which, as Dr. Shah mentions, is important when you're having an allo done. (Dr. Shah himself is at one such center: MD Anderson in Houston.)

I haven't spoken much about your response to treatment so far. As I mentioned earlier, I personally think it's important, based on what I've read and heard, to have as deep a response as possible going into an allo transplant. It just seems to better long-term outcomes with the procedure.

I realize this is a huge amount of information to consider. However, it's also a very important decision, so you want to make sure you cover all the bases. Let us know what additional questions you have, and we'll try to help as best we can.

Good luck!