Anyone had successful stem cell transplant for AML?

Thanks again, Lori! I mentioned to her Onc that her hemoglobin would drop below 8 before her transplant and she'd still go to her exercise class 4 days a week but it doesn't work that way anymore. It's different now and I was trying to understand why but I'm not going back to med school 😉 to understand in detail. I just don't understand what all is needing to recover in her body.

Another thing I learned was that Xanax and Ativan (benzodiazepines) can cause some of the problems she's been having to I'm weaning her off those hoping that she doesn't get depressed or anxious again. Her Onc concurred.

Her Psych and I talked (texted) about mental stimulation. Her cognitive abilities have really gone down the tubes after being a high functioning PhD/CPA. But I can't get her to do much but lie on the sofa and watch TV. She hates playing games so that's out. I guess that will have to wait until after the fatigue subsides.

She still goes with me to walk the pups twice a day. We would do more but it's been too hot lately. I'm very grateful for that even though she doesn't walk very far... it's a start.

Still no hair growth....?

Thanks all!

Hi Lori!
I am not put off by the subjects at all. I’d rather go into this with realistic expectations. You are so right that this is my only option for a full and happy life, and the journey will be worth it. My transplant (for MDS) will be at Mayo Jax and I plan to join the BMT support group there. I am very optimistic and will do my best to stay strong. I guess my biggest concern is the worry this will cause my family and friends......

Oh you’ll love the Mayo approach to this!! You’ll be immersed in that family of your team of doctors, NPs, coordinators, etc. It’s an amazing and challenging experience but truly well worth the effort. It is always a concern for your family and friends. But at the time of transplant your main focus will have to be on yourself. That was a tough mind shift for me! LOL. I’m generally the care giver in my family; reversing roles was weird, and being the center of so much attention! May I ask your age?

Hey Brad, I don’t mean to be so long winded but you’re asking for details so here goes. Honestly, your wife just needs time to recover. The old axiom of ‘it’s not a race, it’s a marathon’ is appropriate in this case. Consider if she had major heart surgery and the length of time her body would require to recover from that. No one would question her being tired or worried about malaise. A procedure like that is generally localized but still involves healing from trauma to the body. It can take 6 weeks minimum for a body to recover, and that’s not a complete return to ‘normal’.

She is only at day 45, not even halfway into that all critical first 100 days so you may be expecting too much too soon. It’s like an infant, they can be born on the same day but no two will develop at the same rate. This all takes time but the end results are the same. ☺️ As her care giver, you feel helpless. My husband felt the same way too. I finally told him to please stop hovering, that I was so grateful for his patience and understanding but I’ll ask when I need help. It helped lighten his burden and he relaxed a little. I’m one year out and he still hovers! LOL

It’s difficult to tell you exactly what we go through when recovering from a BMT. A bone marrow/stem transplant involves replacing the entire immune system, regeneration of bone marrow, along with introducing a foreign DNA into the body. This will be a life long recovery to put it mildly. The body and the new stem cells will take a bit of adapting to each other. Yes, the cells came from her son, so it will help because the DNA is a match. However, there is also your DNA and it may not match up perfectly. So her body and that new immune system will need time to learn to cooperate. Hence, the anti rejection medications. They suppress the new immune system so that an attack isn’t launched against her body until some peace accord can be reached. Her body is considered the host of this new immune system. That system will now control her body, but in reality, her body is merely the guest. As an immune system does, it looks for anything foreign, invasive or inflammatory and sends out interceptors to attack. Except right now, because the cells don’t recognize her body, the immune system wants to launch a war against it. The suppressants keep that from happening. She has a very immature system right now and that will take more than a year or two to become fully functioning.
The very nature of the transplant is that somewhere along the line, her old immune system no longer recognized the cancer cells and they were allowed to run rampant with her AML. The premise of the transplant is that the new system will now recognize cancer cells again, wipe them out if they re-emerge and your wife will have a normal, healthy life ahead.
Her body is also recovering from the conditioning of pre-transplant. And the regimen she was on for her AML. This is not just localized healing. It’s difficult to comprehend because there is no scar from a major surgery, no outward signs of anything being different except the normal hair loss from chemo or conditioning and some weight loss. To be frank, I lost my hair 3 times during my treatment for AML and the BMT. My hair started coming back permanently about 3 months after transplant. It grew slowly at first and then by 6 months it grew at a rapid pace! Now, one year later it’s at least 4 or more inches and thicker, fuller and even curly where it used to be stick straight. In the grand scheme of things the last thing I was concerned about was my hair. I wore really cute little head coverings, I have 2 awesome wigs, but most of the time I was happy to let the world see my head in all its glory. 😉

I know you’re concerned about your wife’s mental acuity. The Ativan and Xanax can definitely be playing a role in her fatigue and lack of ambition. I’ve had some 3 hour MRIs and have taken Ativan to sleep through it. So it will have a huge effect in her tiredness! Brain fog is a real thing too. It can happen from the conditioning but it goes away! It’s truly ok if all she wants to do is lie around and watch tv. She’s obviously not given up. She goes for small walks with you and the dogs. She’s recovering from a huge medical event and truly, time is all that can help here. With low hemoglobin, the fatigue is genuine. Your wife is still very early in this great journey to her new life ahead.
Before I go, a few thoughts: How’s your wife’s appetite? Is she eating much? Low calorie intake= low energy. How are her liver enzymes? Any major shifts? This could effect general metabolism.
Have you checked her other lab numbers, ie., WBC, absolute neutrophils and platelets? If they are all down that is another reason for fatigue.
Has she had a 30 day bone marrow biopsy? These all paint a picture of her progress...and she IS progressing. ☺️

I was 65 at the time of my transplant and now, just over a year later, I’m back to 95% of normal...and that’s probably where it’ll remain. But considering the alternative, I’ll take it!! Feel great, energy and stamina are in a happy place. Best wishes to you!! Keep some printed photos handy of your grandchildren you can place in front of you wherever you’re staying. There’s a point of motivation for you! All the best... Lori.

I have been watching her CBC's since 2006 and am watching them still but not sure about what I'm looking for anymore. Used to be hemoglobin and ANC but those are as good or better than before when she was exercising. I just don't understand the physiological basis for the trauma but it is what it is.

Brad - until two weeks ago (and because I am taking a weekly injection) I hadn’t been above 10.0 HGB for two years. Usually staying in the high seven-low eight range. I’ve been incredibly active and productive. After a SCT - it seems that there are so many moving parts - nothing is simple. My oncologist told me recently that you want a great hematology oncology doc for after transplant - everything before is fairly text book but all of our bodies respond in different ways after. “New normal” is a term that gets overused in some ways but it can be helpful to think in those terms. It’s a process and a discovery.

How was the stem cell transplant was it by injecting it into the organ or intravenously. Please if you can tell it would be of great help.

Thanks again, Lori! I mentioned to her Onc that her hemoglobin would drop below 8 before her transplant and she'd still go to her exercise class 4 days a week but it doesn't work that way anymore. It's different now and I was trying to understand why but I'm not going back to med school 😉 to understand in detail. I just don't understand what all is needing to recover in her body.

Another thing I learned was that Xanax and Ativan (benzodiazepines) can cause some of the problems she's been having to I'm weaning her off those hoping that she doesn't get depressed or anxious again. Her Onc concurred.

Her Psych and I talked (texted) about mental stimulation. Her cognitive abilities have really gone down the tubes after being a high functioning PhD/CPA. But I can't get her to do much but lie on the sofa and watch TV. She hates playing games so that's out. I guess that will have to wait until after the fatigue subsides.

She still goes with me to walk the pups twice a day. We would do more but it's been too hot lately. I'm very grateful for that even though she doesn't walk very far... it's a start.

Still no hair growth....?

Thanks all!