[SharonH]

Questions to ask about possible auto / allo transplants?

by SharonH on Wed Jul 08, 2015 9:59 am

Hi all,

I had my stem cell transplant (SCT) in February and, unfortunately, I did not achieve a remission. My doctor is now talking about doing an auto / allo in the next couple of months. I did get to a good partial remission and have an appointment lined up with the transplant doctor.

I don't know what questions to ask.

I have asked how many of my own stem cells are ' in the fridge.' He will get back to me on that.
I have asked what is my current life expectancy, this has slightly reduced, and yes I know it's not written in stone, but having an idea helps to do what you really want in time. It was 4-8 years. He now believes it's "on the lower end of that scale." I do understand how difficult that question is for a doctor.

My doctor says, that given my age (49), I should really look at this type of transplant.

So can you help with the questions? I don't even know what I don't know!

I am currently on thalidomide and dex. Hate the thalidomide. My face is peeling like sunburn!

The funny part is I still feel that this is sort of like happening to someone else?

Cheers
Sharon

[SharonH]

Re: Questions to ask about possible auto / allo transplants?

by SharonH on Wed Jul 08, 2015 11:22 am

I forgot to say that I was diagnosed Stage 3.

Cheers,
Sharon

[JimNY]

Re: Questions to ask about possible auto / allo transplants?

by JimNY on Wed Jul 08, 2015 1:39 pm

Hi Sharon,

Doing an allo transplant would be a big step. I'm not arguing against it, by any means. But it's not a step to take lightly as there are some serious risks, which I'm assuming your doctor has discussed with you.

Do you have a stem cell donor who is a match, or near match, for the allo transplant?

One question to ask your doctor is what sort of allo he plans to do. Is it a "full" allo, where you are given high-dose chemotherapy (possibly with radiation, as well) before the transplant, which would completely wipe up your own bone marrow? Or is it a "mini allo", with "reduced intensity" chemo before the transplant, which does not completely wipe out your own bone marrow?

Also, you'll want to ask your doctor what sort medications you'll be given before and after the allo transplant to prevent graft versus host disease. There are different options and different philosophies about what's the best way to go.

I'd also recommend talking with the doctor about what plans he has at this point to make sure you have the deepest possible response to treatment before you start the allo process. Allo transplants tend to be more successful the deeper the patient's response to treatment prior to the transplant.

As with many things myeloma-related, there aren't necessary any right or wrong answers to the questions I've suggested. But it would be good to know what your doctor's thinking is on these issues so you yourself can think about them, and also so your doctor knows that you are not just blindly following his advice.

If you haven't done it already, you should consider searching the forum for discussions related to allo transplants. Just use the search box and search for "allo" or "donor". There's a lot of useful information in those discussions, particularly the postings by Mark / Mark11, who has had an allo transplant, and is really the resident expert here on the subject.

Good luck!

[Edna]

Re: Questions to ask about possible auto / allo transplants?

by Edna on Wed Jul 08, 2015 2:34 pm

Hi Sharon

Although you may not have achieved complete remission from SCT and are at stage 3, life expectancy is difficult to predict, and I am surprised your doctor gave you a figure. Many factors are involved, such as cytogenetic abnormalities at time of diagnosis.

5 year survival rates are tending towards 50% surviving 5 years (higher for younger people and lower for old people) from time of diagnosis. Second SCT's and allo's may well give longer survival, but with myeloma nothing is predictable. Get as much information as you can, as JimNY has suggested, to make your decisions as best you can.

Dealing with one's affairs and then living life in the here and now will give peace of mind. The future has never been certain, multiple myeloma or no multiple myeloma.

[karenh]

Re: Questions to ask about possible auto / allo transplants?

by karenh on Wed Jul 08, 2015 5:29 pm

Hi Sharon,

I can surely attest to what a difficult decision it is to decide whether or not to go with the auto / allo transplant combination. My family and I agonized over this decision but ultimately I decided to do this. Mine was an auto followed by a mini allo. Things have turned out well for me and I have been in remission and off meds for 6 years.

Others have asked about whether you have a sibling match. If so, this makes things much easier. If not, you would draw from the registry and they would try to match you with someone who has agreed to donate their cells. I was blessed to have a brother who was a perfect match. With a lower level match, you have the risk of increased graft vs host disease (GVHD). You need to have some GVHD, but the hope is that it will be short term and easily managed.

Equally important is the quality of your medical team. Be sure that they are very experienced with auto-allos . This is more likely in a major cancer center. You might ask about their history with auto-allos and their success rate.

Let us know what you decide and how things go for you. Whatever you decide, we will be thinking of you and hoping for a good outcome.

Karen

[JPC]

Re: Questions to ask about possible auto / allo transplants?

by JPC on Wed Jul 08, 2015 5:46 pm

Hello Sharon:

The fundamental issue is to decide what is best (allo or no). That is a very difficult decision, in and of itself. It is complicated, and I have no advice for you on that difficult decision.

If you decide to go with the allo, however, I will offer the following advice. Make absolutely sure that your are going to the best, most experienced center possible (as Karen has mentioned).

Since you closed twice with "Cheers" maybe you are from England, or somewhere in the Empire (or Boston). It does not matter, but for an allo, you really would need a very, very, very experienced center. The possibility that an auto would result in early death is something like 1%-2% (and that's in debate). From an allo, it's arguably 20% to 30% (that's in debate, also).

A center that is very experienced will do more allo's per year, and is more experienced with the obscure issues that might arise. They also would have a higher critical mass of specialists (for instance heart specialists) who would be available if needed.

To close the loop, if you have access to an experienced center for allo, then I would think its a viable option. If it is the case that you could only access an average or below average center for an allo, then I would rule that out.

Good luck and Regards,

[CindyBrown]

Re: Questions to ask about possible auto / allo transplants?

by CindyBrown on Wed Jul 08, 2015 6:36 pm

Hi Sharon. I am on Day 85 of my mini-allo which was done two months after my auto. We are the same age.

All the questions others have suggested are excellent. I had a sibling donor who was a 90% match (considered a mismatch for clinical trial purposes). The allo has been much harder on my body than the auto was. It was suggested to me for the same reasons your doctors are suggesting it for you. It was a very difficult decision, but I ultimately decided the chance of being around longer was more important to me and my family than having a slightly better quality of life.

Right now I am not having GVHD, so it is much more fatigue-related issues than GVHD. I am on three different immune suppression drugs and there have been some cardiac issues as a result.

You definitely want to be at a major transplant that has done a lot of these. I am at Seattle Cancer Care Alliance, which does more allos for multiple myeloma than any other center in the world, I believe. If you want to chat more, let me know!

Cindy

[Mark11]

Re: Questions to ask about possible auto / allo transplants?

by Mark11 on Thu Jul 09, 2015 12:21 pm

Hi Cindy,

Hopefully you are out of the hospital and doing well. I am hoping the next comes from you at home and in full recovery mode!

Mark

[Mark11]

Re: Questions to ask about possible auto / allo transplants?

by Mark11 on Thu Jul 09, 2015 12:25 pm

Hi Karen H.,

Congratulations on being functionally cured of the supposedly incurable multiple myeloma! I am surprised nobody else congratulated you. I would think seeing a fellow patient doing so well after using immunotherapy would be very encouraging to the other patients reading. Your advice was spot on. I hope you can contribute more often.

Mark

[Mark11]

Re: Questions to ask about possible auto / allo transplants?

by Mark11 on Thu Jul 09, 2015 12:39 pm

Hi Sharon,

You received excellent advice in this thread. Non relapse mortality is much lower than 20-30% for patients doing allos prior to relapse. There was a Canadian study at 2013 ASH that showed a 10% NRM and a cure rate over 40% for upfront allo transplant. Probability of 10 year progression free survival is 44%. The chronic GVHD rate was high but there are ways to lower that. That is definitely the question to ask your doctor - what is your risk of GVHD. That is dependent on a number of factors including how you do the transplant and who your donor is. Best of luck moving forward!

"From 2001 to 2010, 93 patients received tandem HSCT from a matched sibling donor; median age was 52 years (range 39-64) and DS stage III present in 76%. All but 6 patients received a single line of induction therapy. Median time from diagnosis to autoHSCT and from auto- to alloHSCT were 7 (range 3-57) and 4 (range 2-13) months, respectively. At least partial remission (PR) status was obtained in 84% patients before tandem HSCT. After a median follow-up of 7 years, cumulative incidences of grade II-IV acute and extensive chronic GVHD were 9% (95%CI: 4-15) and 85% (75-91) respectively. Cumulative incidences of NRM and progression were 10% (95%CI: 3-22) and 47% (37-58; Fig. 1). Probability of 10-year OS and PFS were 64% (50-74; Fig. 2) and 44% (31-56; Fig. 1) respectively."

https://myelomabeacon.org/resources/mtgs/ash2013/abs/3353/

Mark