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Husband with AML facing a stem cell transplant
Bone Marrow Transplant (BMT) & CAR-T Cell Therapy | Last Active: Sep 7 11:43pm | Replies (117)Comment receiving replies
Hi @loribmt
Hope all is well!
Today is day 57 for us. Dane is doing well overall, however with lingering fatigue and nausea. He is eating, but neither losing more or gaining weight.
Today’s clinic visit revealed his platelets have gone down to 125,000, which have been slowly declining over the past month. Doc isn’t too concerned with it yet but he is cautious. Latest chimerism test shows 100% on two numbers and 70% on the third number. Hoping it continues to trend upward. These test results lag a couple weeks so we have to be patient with getting updates.
Given the high risk nature of his AML, a bone marrow biopsy is being done today too. So we’ll get all kinds of insight about what’s going on in his blood and marrow by next week, at least preliminarily.
We are scheduled to meet with a new hematologist in early September to discuss recommendations for maintenance chemo going forward. As you may recall, we were not happy with his original hematologist, so hoping we like this one better. But most importantly, I pray we are discussing only positive bone marrow test results. 🙏
That pesky anxiety is starting to do a number on both of us…
Have you heard of platelet counts bouncing around a bit after transplant?
Mary
Replies to "Hi @loribmt Hope all is well! Today is day 57 for us. Dane is doing well..."
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Hi Mary, Ooo anxiety is a cheeky little devil, isn’t it? Fills our heads with all kinds of negative thoughts! If it’s any comfort, fatigue isn’t uncommon well into many months after transplant. We all recovery at different levels and really, if there is still nausea plaguing Dane, that is a big culprit right there. It’s a stamina robber. I know I improved greatly once I was able to start working my way off the anti-nausea meds. I found that they can slow the normal peristaltic gut action and contribute to the nausea itself. I began relying solely on the sublingual Zofran melts just before eating. Slowly my guts improved. Before that time though, gaining weight was impossible. At least Dane isn’t losing so he’s holding his own right now. That’s an ok balance. He’s also having to limit some of the foods that would help pack on calories such as ice cream because of the mucus it causes. So I think he’s doing the best he can right now…this just takes time.
I checked back on my records. My blood numbers fluctuated from week to week. At day 59 my platelet level flagged as low, down to 144. A week later they were up to 183, only to have dropped again the next week. There’s still a lot of recovery taking place inside Dane’s body! Try not to get too hung up on numbers right now. If his doctor isn’t worried, then you don’t need to be either.
The BMBX will be a good source of information. Pretty sure you’ll be having some ‘scan-xiety’ with waiting on those results. With the one number lower on his chimerism his doctors are making sure things are going well overall with the BMBX. Occasionally if there is one part of the chimerism not at 100% the transplant doctor may consider infusing some of the cells that were held back and frozen after the initial transplant. This ‘recharges’ the immune system to make it a little more aggressive. Similar results can be sometimes be achieved by reducing the amount of the anti-rejection meds which have helped to hold the newly implanted stem cells back a little until. By lowering the tacro trough, they become more aggressive and may help raise that chimerism. Again, we all recover at different levels. His team at Rush is on this! ☺️
Sending positive thoughts your way for a super clean BMBX. I hope the nausea disappears soon! Air hugs to both of you!