Stem Cell Transplant Decision & Success

Posted by jeffhampton @jeffhampton, Dec 31, 2024

I am having a challenging time deciding whether to move forward with a stem cell transplant. I have AML with INV 16 and was diagnosed on November 18, 2023. Initially, I went through Induction Chemo followed by 4 rounds of Consolidation Chemo then I relapsed in Sept. 2024.

My challenge is getting straight answers from my oncologist about the risks, the chance of success, how long I may be down, etc., based on their experience with a 57-year-old male. The answers I receive are very vague. I would also appreciate guidance from someone who has been through an STC transplant. This too has been difficult. I left out that my donor is one of my daughters (half-match).

I would greatly appreciate sharing anyone's experience and input. I am very confused and the past 13 months have been a roller coaster. I would really like to get off this roller coaster.

Interested in more discussions like this? Go to the Bone Marrow Transplant (BMT) & CAR-T Cell Therapy Support Group.

Alta Net | @altabiznet | Nov 4, 2025

In reply to @loribmt "@ Good morning @altabiznet. Finally getting a chance to catch up with my messages on Connect..." + (show)

@loribmt

@ Good morning @altabiznet. Finally getting a chance to catch up with my messages on Connect after being away for a few days. After reading your last reply, I realize now that you had an ASCT which is an autologous stem cell transplant…using your own cells. My cells came from an unrelated donor, referred to as an allogeneic bone marrow transplant. While there are a few shared procedures and protocols, the differences between the two transplants makes it difficult to compare recovery stories…they’re not apples to apples.

You haven’t mentioned what your diagnosis was that required you to need the ASCT. But you most likely went through some form of treatment beforehand to get you to a state of remission. Your doctor suggested the transplant as a means to help hold you in remission and potential cure. Before the transplant, you were able to donate your own stem cells, which were collected and frozen to be able to be returned to you after you went through the pre-conditioning chemo that would kill off any remaining cancer cells in your blood and clean out your bone marrow.
Stem cells are immature cells which mature into all the sorts of blood cells, white, red, platelets and even more stem cells. After the transplant the newly re-installed stem cells then have the Herculean task of entering the clean bone marrow, setting up housekeeping to begin churning out millions of cells every minute in an effort to replenish levels to normal. Depending on the underlying disease and treatment, the cancer load was greatly reduced or maybe eradicated. This, along with the newly transplanted cells, allows the damaged bone marrow to recover and the new blood cells produced by the stem cells the chance to flourish. It can take many months for all the ‘systems’ to be up and running fully and everyone recovers at their own pace…some taking longer than others.

It is troubling this far out that you’re feeling worse over time with fatigue, dizziness and experiencing anemia. It’s pretty frustrating when your SCT team isn’t helping to address the problem. Fatigue associated with anemia can be so debilitating and you want your life back!

Besides the many tests you’ve had, does your team run a liver panel? Have you been checked for possible an auto immune disease or thyroid issues?

I would like you to meet more of our members who have had an ASCT and think this discussion might be a good place to start. It was posted by @justpeachy about her experience with her transplant. Many others have joined in the conversation. Hopefully you’ll get more information comparing apples to apples. ☺️ Feel free to tag any member!

My autologous stem cell transplant journey:
https://connect.mayoclinic.org/discussion/my-autologous-stem-cell-transplant-journey-mayo-phoenix/
I know you’re so frustrated but please don’t give up hope. You have gone through an enormous life altering change. You’re mourning the way of life that you’ve lost since your initial illness and the ASCT. And with the symptoms you’re having, you can’t even find peace with a new normal. You just want some level of predictability back! I’ve been there and it did take time to find footing on new ground. Each day, take on a little task that you may find rewarding. If you’re not doing any amount of cooking yet, try something simple to give you a sense of accomplishment…even if it’s teensy.

May I ask what your underlying diagnosis was?

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@loribmt

Hi Lori, my ASCT was for systemic sclerosis or scleroderma (autoimmune), and the disease had to be progressive with 2 prior therapies failed. I am hoping that my current condition is recovery in-progress and not a new normal. The team projected 1.5 years for recovery, and I am at 9 months now. But fatigue is tough to cope with and may be other reasons for it other than the recovery, possibly something that can be helped. The transplant was administered and followed by Blood Cancer Center Team, and the recovery should be similar to the one post BMT but may be longer. The doctor who referred me, had a patient post this type of ASCT transplant, and she recovered to normal levels, although it was tough and took her a while. It is still helpful for me learning from other patients about their milestones and what worked - with understanding that every patient is different. Thank you for the link to ASCT.

Lori, Volunteer Mentor | @loribmt | Jan 12 8:07am

In reply to @jbforet "Went through all classes . Getting chemo now . Side effects have been minimal. Transplant 3/11" + (show)

Hi @jbforet. My goodness, it’s been almost a year since your transplant. I just realized you haven’t shared your story past the chemo! Not sure how we lost touch but I’d love to hear how you’re doing. How was the recovery? Are you feeling pretty normal now?

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