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Anyone had successful stem cell transplant for AML?
Bone Marrow Transplant (BMT) & CAR-T Cell Therapy | Last Active: Sep 2, 2022 | Replies (163)Comment receiving replies
Hi, just joining this blog. I have been looking for a support group as my cancer clinic does not have one.
I am a 15 month post AML Transplant person with NPM1 and FLT3 mutations. Not comfortable with the term 'survivor' yet, even after 31 months plus fighting cancer. Started with 5 rounds of chemo, after the 2nd round they removed part of my lung due to infection to save my life, which delayed the remaining consolidation. Had a couple of other neutropenic fevers/infections after chemo requiring more hospitalization.
A few months after finishing chemo I relapsed when COVID started, this delayed timely diagnosis and then the transplant for months. Despite a 6th round called induction salvage chemo, managed on an outpatient basis due to pandemic craziness, and using a relatively new oral chemo drug called Gilteritinib, I went into Transplant with Minimal Residual Disease. Thus reducing my chances for long term success. After the 6th round of chemo I spent time in ICU with another infection, and during Transplant prep I had a bad lumbar puncture test that would not heal, making me wonder if I could even survive the planned Phase 1 Trial Transplant deemed my best option, with total body radiation, more chemo and additional IV radiolabeled isotopes. They actually gave me a note in case I was stopped by folks who monitor radiation in the community, as I would be "hot" for a bit. Who knew this was a thing?
I spent August and part of September 2020 in the hospital during another COVID surge, awful. Then several more months in a hotel near the clinic until I was released to go home. They put me back on low dose Gilteritinib, then stopped due to the side effects. It took months to lose the wheelchair I left the hospital in. I developed some acute GVHD of the gut and mouth, then more chronic GVHD, now on Prednisone. Fast forward to my annual Long Term Follow Up tests and exams and latest bone marrow...I still have 100% donor blood and my blood values have improved but my PCR resulted at .017 NPM1 but no FLT3. So my fight continues. They tell me I should be hopeful.
Thank you to my husband, and my son and daughter and friends for giving me a purpose to keep on.
Happy Brad and his wife are almost at 90 and soon 100 days, big milestone! The further out your are from Transplant the better. Best I can describe my life with AML...it has been a roller coaster. I am doing ok today, just one day at a time.
Looking forward to making new friends : )
Replies to "Hi, just joining this blog. I have been looking for a support group as my cancer..."
Hi again, @anieke, I know you joined us looking for support groups for your AML/SCT journey. I wanted to provide you with 3 links to groups where we have more current SCT/BMT discussions.
https://connect.mayoclinic.org/discussion/my-bone-marrow-transplant-bmt-story-will-you-share-yours/
https://connect.mayoclinic.org/discussion/discussion-thread-for-bmtstc-patients/
https://connect.mayoclinic.org/discussion/chronic-gvhd-lets-talk-about-it/
Since you’re new to Connect, I hope you peruse the other 70+ groups in our community forum. You never know how your life experiences may help someone else. Feel free to jump into any conversations where you feel at home.
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Hi @anieke! Welcome to Mayo Connect. You’re among friends here. We’re an online community where members share our stories and experiences to help each other find answers, offer encouragement and to give hope.
I’m a fellow AML/transplant survivor~FLT3 ITD positive (low alleleic ratio), NPM1 wild type, IDH2 mutated. Mouthful…but you can see we share some of the same mutations. Two years, 2 months post transplant. Some GvHD but right now I’m in a quiet phase…I’ll take it! I want you to know there is hope on the other side of all of this but roller coaster is the perfect description!
You sure had more than your share of trouble with this aggressive cancer! I’m sorry you’ve had such a rough road. Covid certainly complicated your situation. I guess for our situation, luck isn’t really the right word, but I was fortunate to have all of this happen before Covid hit and can’t imagine how difficult this was for you during the pandemic. You’re really a trouper!
Your BMBX sounds encouraging! From what I’ve learned the FLT3 mutation is the tough one and if you have no trace of that, you should feel pretty reassured. I hope your GvHD is under control now and you’ll be able to taper off the prednisone. I know we always have to be cautious but at some point our new immune system will recognize us as non-threatening! In the meantime, thank heaven’s for prednisone, huh.
I do have to share some sad news. This posts regarding Brad and his wife are from 2020. I’m sorry to say that Brad’s wife passed away shortly after her day 100. She actually was doing quite well after the transplant by that time but she had an accident that caused a serious infection and didn’t pull through. It was devastating news for our community.
I’d like to introduce you to some of our other AML/SCT and SCT transplant members. Meet @tedwueste @waveg @tmvanla @edb1123 @jimbond48 @lisal64 We’ve all been through stem cell transplants for various reasons.
It’s wonderful you could finally ditch that wheel chair! I remember my Rocky moment, theme song in my head, when returned the chair on my last day at Mayo and ran up a flight of stairs! What a change from not being able to go up one step! LOL. Has your energy returned for the most part?