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Stem Cell Transplant Decision & Success
Bone Marrow Transplant (BMT) & CAR-T Cell Therapy | Last Active: Jan 12 8:07am | Replies (72)Comment receiving replies
@loribmt
Hi Lori, thank you for getting back to me. My BMT team suggested that for my type of autologous transplant (no GVHD) it may take 12 months post-transplant before the cells that were removed during transplant will start recovering, and overall recovery was projected for 1.5 years. I am at 9 months now. My concern is that things are not getting any better for the past 6 months. The team is evasive with their responses. They think, I have all signs of anemia, but no iron infusions are indicated as my blood counts are not critical. No solution, except for time. I started taking iron supplements. No change in condition so far. Transferrin saturation was also on the lower end. No heart or lung related conditions. My medications are reduced by now as well. So far, no real explanation for this degree of dizziness and fatigue, except if this is a part of the recovery process (anemia, low Hb, and tissue hypoxia?). The team is evasive about when things should start getting better. Learning from other patients' experiences is helpful to understand where I stand with recovery and what to expect in the future. I see from other patients' posts that things may get worse at 6- and 9-months post-transplant with no solutions from the treatment teams. You have successfully recovered which is giving us all a hope. If you remember, where you dizzy when walking and/or talking during the first 12 months? Did you have anemia and for how long? Did you take iron, Folate, or any other supplements that helped? When did you start cooking, going out, driving a car? Any insights regarding milestones in getting back to normal life are appreciated.
Replies to "@loribmt Hi Lori, thank you for getting back to me. My BMT team suggested that for..."
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@ 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?