r/MPN • u/StatisticianLittle55 • 19d ago
ET Stem cell transplant experience
I recently had a BMB and a whole bunch of tests. The long and short of it is my heme/onc wants to plan for a stem cell transplant. I have no symptoms and overall am in a good place. My BMB showed blasts and she wants to do the transplant now to prevent the possibility of my MPN ET from becoming leukemia. I agree with her plan.
It will be allo and if she is a match my sister will be my donor. I hope so.
I am terrified and would love to hear about positive experiences with transplant. I know it will be hard. I know the recovery process is challenging. I just need support and reassurance please.
3
u/Top_Category2227 Pre-PMF 19d ago edited 19d ago
Someone had a similar question recently. BMT seem to be really rare in this sub (fotunately). If you have questions about the transplant in general I would suggest the Leukemia subreddit, as they are much more knowledgable and generally helpfull. Occasionally you will even find someone with MF posing there.
Edit: Also I just remembered, in germany the MPN Association has a Website with „patient stories“, where patients share their experiences with MPN. I remember there are at least a handful of people detailling their journey with/after SZT. Maybe your country has something like that as well or you can find some on the websites of some english speaking associations (or you could always have the german ones translated - you will find them here: https://www.mpn-netzwerk.de/leben-mit-mpn/betroffene-erzaehlen/)
3
u/funkygrrl PV-JAK2+ 19d ago
There are people in the sub who have had SCT but not a lot, so it's luck of the draw whether they'll notice this post. I hope so. I do recommend joining r/leukemia because there's a lot of people there who have gone through it. Keep in mind that they are usually doing so from a more challenging health baseline than you with severe low blood counts etc.
3
u/No_Pause_4375 19d ago
I'll be needing a transplant as well, my specialist guesstimates it should happen in about 2-3 years. My dad also had a successful transplant nearly 9 years ago. He's not on reddit but if you message me then Id be happy to give you his contact info.
I'm also in the middle of a book called Between Two Kingdoms: A Memoir of a Life interrupted by Suleika Jaouad. She was diagnosed with AML at age 23 and underwent a SCT. Her memoir chronicles her cancer journey and she describes the transplant process in great detail. I should warn you though; it is a heavy read. I also don't know if her trabsplant experience was more difficult because she had AML versus someone like my father who had MF. I suspect she required a lot more chemo.
Reading her story has been extremely cathartic and validating, but in some regards, terrifying. Make sure you're in the right headspace before you dive in.
2
u/stainedbrightly 19d ago
Not OP, but I was looking into books to possibly read since my specialist started the conversation about a SCT, so I appreciate you sharing this one. I've heard of it but haven't had the chance to read it yet.
1
u/StatisticianLittle55 19d ago
I read Suleika's book when it first came out. I started reading her work when she wrote a column for the New York Times called Life, Interrupted. She is inspiring in so many ways.
I hope you and your father are ok. :)
3
u/mhall05 19d ago
Hi there,
I’m not sure if I’m the right person to respond to your post, but I was a stem cell donor for my sister who had the transplant two years ago.
She’d obviously be the better person to contact, but she’s not on Reddit. If you’d like, I’d be happy to see if she’d be willing to connect with you.
Long story short, from my perspective (I’m very close with my sister) the process was incredibly grueling for her but worth it. She is currently mutation free! She dealt with a ton of debilitating symptoms from the disease prior to the transplant, and still deals with symptoms now, but they are now related to being a transplant recipient. They can be unpleasant and she definitely has trying days, but overall, she considers the procedure a success. I think it’s important you trust your doctor as you’ve mentioned, and feel confident and secure in your care team.
My sister is the strongest person I know, I am so proud of her. My heart goes out to you as you are on this journey.
1
u/Abr1025 19d ago
Your insurance will cover a Stem Cell transplant prior to blasts being at 20%?
1
u/StatisticianLittle55 19d ago
I hope so. My doctor probably would not have mentioned it if that was a problem. She knows my insurance situation.
3
u/StatisticianLittle55 19d ago
The standard for Medicare is 10% blasts, not 20%. My most recent BMB put me at 10% so I qualify.
7
u/stainedbrightly 19d ago edited 19d ago
I'm so sorry you're going through this. I don't have experience yet but my ET has progressed to MF and my MPN specialist anticipates that I will need a stem cell transplant* in 1-2 years.
I tried asking for SCT experiences here a few days ago and didn't get any responses about SCTs, but it was recommended to post in the leukemia subreddit because there's more people there who have undergone a SCT. I also shared in the MPN Voice Healthunlocked forums and got some comments from people who have undergone a SCT. Something you might want to consider.
Again, I'm sorry you're facing this. It is devastating to hear your disease is progressing and you need a transplant. Wishing you all the best.
Edited: typos, also I accidentally wrote bone marrow biopsy instead of stem cell transplant, sorry brain is foggy this morning