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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
Hi @altabiznet, sorry for the delay in responding. I’m in the midst of traveling and was offline all day. Oh golly, I’m so sorry to hear you’re still having such a challenging time with recovery from your BMT.
After reading through the discussions in Connect, I’m sure you’re noticing that we all tend to have a litany of different stories about recovery. I’m post +6 years, so it’s been quite a while and I don’t recall the exact time-frame of the fatigue I experienced. Though I know the first 2 months were the worst. After that, there was a slow but steady gain of strength and stamina as the months passed.
I can’t say if what you’re experiencing is atypical or not. It’s certainly a concern and frustration for you and hard not to feel discouraged. Recovery from a BMT can be one of 3 leaps forward and then 2 steps back but you’d like to feel you’re gaining on this.
Medications can be cause fatigue as you mentioned to @jeffhampton. But there can also be side effects from the transplant itself due to the chemotherapy and/or gvhd. I’m assuming your transplant doctor and team are aware of your worsening symptoms. What have they suggested for you?
What are your blood results showing? Any decrease in hemoglobin? Have you had any heart related tests or pulmonary function tests?
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@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.