@g4c I hope after reading some of the comments by fellow members who have had BMT for AML or MDS, you’ll begin having more confidence in the success of your transplant.
As I mentioned before, after 22 months with no relapse, statistically, the likelihood of a relapse diminishes. If the sleeper cells that have gone dormant during treatment haven’t emerged in that 22 month period they most likely won’t resurface or they’ve been eradicated by the new immune system. If there’s no relapse by 5 years, it is considered cured. I was told that I now have a normal life expectancy again.
I’m almost 6 years post and quite frankly, if I wasn’t on Connect every day as a mentor discussing BMT/SCT or AML with members, I know there would be weeks going by without my even thinking about the transplant or having had AML. The only thing that concerns me now is the fact I’m considered immunocompromised even though I feel that I’m in excellent physical health. I’m 71, still rack up 8+ miles walking daily, exercise, lift weights and travel. Other than sporadic small flares of oral gvhd I’m 99% back to normal.
I was 65 at the time of my AML diagnosis. That 6 year anniversary is coming up in a couple of weeks. My transplant was 4 months later, in June, after 1 induction and 2 consolidations. I had 3 mutations. Here’s my diagnosis:
FLT3 ITD positive (low alleleic ratio), NPM1 wild type, IDH2 mutated, s/p an MUD allogeneic PBSCT
So, you and I shared at least one mutation…and I also had a MUD (matched-unrelated donor)
I have the honor of mentoring patients at our local clinic and also through Mayo Connect. Occaisonally, I have the absolute pleasure of meeting some of these people in person. A few years ago, I was so excited to meet a young woman and her family with whom I’d been communicating in advance of Sky’s transplant. We still chat from time to time. 3 years out and she’s doing fabulous…just starting grad school! You might enjoy reading about our shared journey.
https://connect.mayoclinic.org/blog/about-connect/newsfeed-post/mayo-clinic-connect-brings-together-2-women-with-leukemia-46-years-apart/
I really want you to enjoy this 2nd life that you’ve been given without worrying about what ifs. From what I’m reading, you’re doing everything right! You were healthy before AML and you’re healthy now. You no longer have AML so you can move forward with your life without focusing on its return.
We’re all about hope here in Connect. So I’m hoping that you’ll breathe a little easier tonight. ☺️
Thank you so so much!! You have given me a tangible beacon of hope, as good as any medicine. My wife and I both had tears of joy after reading your words. I’m going to print it out and put it up on my motivation board. I had 100 days of skin GVHD with multiple rounds of steroids and 19 rounds of photopheresis to calm my transplant (I nicknamed the “piranha”) so I’m hoping he was good at the graft versus leukemia work. Grateful every day. Blessings to all on this journey.