[Chocoholic1972]

To have a stem cell transplant or not

by Chocoholic1972 on Thu May 12, 2016 8:49 am

Good afternoon,

First of all I am so sorry about all of you who have to go through this terrible illness and very trying period of long treatments. I cannot even imagine what is must be like and how hard it must be to get your strength together every morning to keep going through he grueling treatment of many medication and/or injections you have that day.

My mother-in-law was diagnosed with myloma in February this year. She had terrible back pain all of a sudden and when she went to hospital with it, after some blood and bone marrow tests she was told the terrible news. She is 64 years old and was in excellent health and physical fitness.

We were all in shock and I think we all took about a months or more to just process all the information we were given by which time she has already started her first chemo therapy session.

It is very hard to watch her suffer through all this and we all feel so helpless.

She is currently in her 4th cycle of chemo. This is the last cycle. We are extremely pleased with the outcome for now, as by the start of the 4th chemo session she was told her blood results are great and her levels are back to a normal person's level. Which means she was given an option to do or not to have a stem cell transplant.

We were so pleased that she does not have to go through that phase as we were all dreading that part. But now thinking about it we are not sure if she still should do it or not. We are worried that if she does not do it, myeloma may come back much sooner than it would otherwise. She is extremely weak after all the chemo and terrified of doing the stem cell replacement and I know that she would rather not do it. But we are worried about long term and if a stem cell transplant will definitely keep myeloma at bay for longer we would like to convince her to have the treatment. However, if it does not offer a definite benefit, than rather she did not go through the grueling process.

We would be extremely grateful for anyone's advice on this.

Many thanks

[Multibilly]

Re: To have a stem cell transplant or not

by Multibilly on Thu May 12, 2016 10:28 am

Hi Sue,

Welcome to the forum.

You might want to read through this thread and explore the various links within it, in addition to taking Cheryl's advice on searching through this forum and understanding your mom's cytogenetics.

https://myelomabeacon.org/forum/stem-cell-transplant-is-it-necessary-t5173.html

There's no perfect answer here. In the end, it will require a leap of faith as to which path your mom chooses to take.

Last edited by Multibilly on Thu May 12, 2016 2:16 pm, edited 1 time in total.

[JPC]

Re: To have a stem cell transplant or not

by JPC on Thu May 12, 2016 12:12 pm

Hello Sue:

Sorry you need to be here, but welcome. You have some very good direction from Multibilly on this issue. It is virtually impossible for an outsider to make a recommendation on this decision, because so many personal factors, and not to mention risks are involved. I would be reluctant to make a recommendation (like Multibilly).

However, I will give you some questions to think about and considerations based on my recent readings. If your mother-in-law has reached complete response (CR), or better yet stringent CR, or MRD-, AND, she has no more than one risk factor. I think that most doctors would not think that having an autologous stem cell transplant (ASCT) at initial induction would be necessary. Ongoing studies are evaluating whether having an ASCT at first relapse is as good as having it after initial induction. The verdict is somewhat out right now on that question, but it looks at least pretty close. The ASCT, if needed, could potentially be given down the road (but not too late).

So I gave you some acronyms and the term "risk factor" to research. Some of the risk factors come from the FISH test on chromosomal abnormalities. In the case of my wife, who is younger than your mother in law, she had the t(4;14) translocation, so we decided to go with the ASCT. At this stage, she is receiving post-transplant consolidation, and we are hoping to get to CR with this (not yet). Other of the risk factors relate to kidney and bone problems, creatinine, and albumin (among others).

If your MIL has two or more risk factors, and/or has less than a CR, then I think most doctors would lean towards recommending the ASCT, though its still a personal decision, and many patients do very well without it.

There is a lot to digest, and many more considerations than I just mentioned, but I think these might be some of the main ones (or near to it). The good thing, for sure, is that there are a number of new drugs and "pipeline" treatments in the works. There has been recent improvement (in an overall sense), and the hope is that this will continue. Most patients are doing better in recent years; however, there is still a small group of patients in the "high-risk" category that tend to do not so well.

Good luck to you.

[moonscape]

Re: To have a stem cell transplant or not

by moonscape on Thu May 12, 2016 1:42 pm

I'm in my 6th cycle of 8 for induction therapy and have responded very well. My specialist seems to lean against a stem cell transplant for me, but encourages me to meet with the transplant team so I can make an informed person decision. Her philosophy seems in line with what JPC said, though several myeloma specialists I've heard from recently have leaned very heavily towards a stem cell transplant. It's daunting.

Statistics say (a wiser soul will correct me if I have this wrong) we gain about 9 months progression-free survival (PFS) but we give up some quality of life (QOL) months for the process. Right now, overall survival (OS) is the same either way, though myeloma specialists I've heard recently say there is overall survival benefit as well. However, statistics can't say how we individually will respond.

I've read so much on this subject. It's a burdensome decision to have to make so early in the learning curve, and there's no right or wrong answer.

I empathize!