Stem cell transplant questions to ask doctor
January 17, 2020 9:47 AM Subscribe
My father's alemtuzumab treatmentsappear to be going well. So well that his doctor is now very keen on a stem cell transplant (autologous). What questions do we need to ask ?
I remain somewhat confused by the mechanism of action of this leukemia, which is probably not helping. I am sourcing questions quite widely
The current list of questions I have are:
1- why autologous vs allogenic
2- what are best, worst and expected case scenarios
3- when does it happen, how long does it take, what are the things we would need to know about visitors or caretaking or recovery period
4- when will we know if it works
5- how long is it expected to work for
6- you were initially against it, what made you change your mind? (this is my most important question)
7- i've been researching on pubmed and it doesn't seem to help that much, is there new info showing it does help?
8- how will this impact quality of life if it does/doesn't work
I remain somewhat confused by the mechanism of action of this leukemia, which is probably not helping. I am sourcing questions quite widely
The current list of questions I have are:
1- why autologous vs allogenic
2- what are best, worst and expected case scenarios
3- when does it happen, how long does it take, what are the things we would need to know about visitors or caretaking or recovery period
4- when will we know if it works
5- how long is it expected to work for
6- you were initially against it, what made you change your mind? (this is my most important question)
7- i've been researching on pubmed and it doesn't seem to help that much, is there new info showing it does help?
8- how will this impact quality of life if it does/doesn't work
My mom had an allo transplant last spring. I've also been an anonymous stem cell donor, and I work in the field of Immuno-Oncology. Much of my family's experience will be different from yours because your dad's transplant would be autologous, but I would want to go in with eyes open about:
1. Conditioning regimen (the chemo you get to clear out the old stem cells before you get the new ones.) It was way more brutal than I expected, even though it was described as "reduced intensity."
2. Your dad's overall health. The doctor should be taking this into consideration, but if he has any pre-existing co-morbidities (diabetes, heart disease, etc.) that's going to make it harder for him to have a good outcome from the transplant.
3. Emphasizing your #3 above about caretaking. My mom had to have 24/7 companionship for the first 100 days post-transplant, and there was a ton of stuff like clinic visits, medication changes, and sanitation protocols to coordinate. Is that something that can be realistically engineered for your dad?
4. Long term side effects. In our case, we had to become really educated about GVHD, which won't be an issue for an autologous transplant, but maybe there are other issues that you'll want to be prepared to manage/recognize.
5. Where would you get the transplant done? How much experience does that hospital/doctor/center have with patients like your dad? We visited two centers before making a decision. In our case, we used the tools at https://bethematch.org/tcdirectory/search/ to answer this question, and to look at expected vs. actual survival rates for the two (that tool doesn't apply to autologous transplants, but it might be helpful to someone reading this question in the future.) We ended up choosing the slightly less prestigious center because it was going to be massively logistically simpler for us, and it was 100% the right decision.
My heart goes out to your family. This can be a really hard decision to make, since it is often quite risky, and there are no half-measures. I'm hoping for a good outcome for your dad, whatever you decide.
posted by juliapangolin at 11:10 AM on January 17, 2020
1. Conditioning regimen (the chemo you get to clear out the old stem cells before you get the new ones.) It was way more brutal than I expected, even though it was described as "reduced intensity."
2. Your dad's overall health. The doctor should be taking this into consideration, but if he has any pre-existing co-morbidities (diabetes, heart disease, etc.) that's going to make it harder for him to have a good outcome from the transplant.
3. Emphasizing your #3 above about caretaking. My mom had to have 24/7 companionship for the first 100 days post-transplant, and there was a ton of stuff like clinic visits, medication changes, and sanitation protocols to coordinate. Is that something that can be realistically engineered for your dad?
4. Long term side effects. In our case, we had to become really educated about GVHD, which won't be an issue for an autologous transplant, but maybe there are other issues that you'll want to be prepared to manage/recognize.
5. Where would you get the transplant done? How much experience does that hospital/doctor/center have with patients like your dad? We visited two centers before making a decision. In our case, we used the tools at https://bethematch.org/tcdirectory/search/ to answer this question, and to look at expected vs. actual survival rates for the two (that tool doesn't apply to autologous transplants, but it might be helpful to someone reading this question in the future.) We ended up choosing the slightly less prestigious center because it was going to be massively logistically simpler for us, and it was 100% the right decision.
My heart goes out to your family. This can be a really hard decision to make, since it is often quite risky, and there are no half-measures. I'm hoping for a good outcome for your dad, whatever you decide.
posted by juliapangolin at 11:10 AM on January 17, 2020
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1. Statistically, does this treatment increase "overall survival" or only "progression-free survival". For myeloma, it increases progression-free survival only, and that for only about nine months, which is about how long it takes you to recover. It increased overall survival for myeloma in the 1990s, but with new drugs available in about 2006, it does not.
2. If it only increases progression-free survival, is there a reason this is important for your dad?
3. What are the long-term effects on the immune system? (Most myeloma patients die from infection, not the myeloma.)
4. Does stem cell transplant increase the risk of secondary cancers? (This is one that the stem cell transplant doctor actually lied to me about - he said it doesn't more than the drugs I'm already on, and it absolutely does - again, that's for myeloma).
5. Do they have a way of determining which patients stem cell transplant will work for? (They don't for myeloma. For some people, it has no effect whatsoever. But some people get years of remission.)
Also, I find the Smart Patients website very helpful. You might want to sign up for the community for your dad's kind of leukemia. You'll be able to hear from people who've made different decisions and hear about what their outcomes are. You'll be able to get much more specific answers from more people than you can here.
Good luck to you and your dad.
posted by FencingGal at 10:28 AM on January 17, 2020 [1 favorite]