Anyone had successful stem cell transplant for AML?

I just saw what another person posted as well. It is tough to walk through all of this and grieving is an important thing. It’s okay and an expected part of this. Another element that I’ve processed a bit is PTSD - there are often unexpected thoughts and desires that can come up. I don’t want to give “advice” per second but I can share what’s helped along the way. The integration of all the things we experience and feel is vital. I have found that writing out my story has been very therapeutic as well as staying connected relationally. Often people (people I love) haven’t known what to do so I tell them what I need: will you visit me? Can we FaceTime? That takes a little extra energy but I found that rather than being upset that people weren’t doing certain things - I would let them know. Everyone responded well. People often just don’t know how to help and might stay away for fear of saying the wrong thing.

@bradmn you and your wife have been through a lot and continue to face issues. I would hope that there are some close friends or family members that could provide some relief for you to do some selfcare (sharpening the saw) mentally, physically, socially, and emotionally. As caregivers we have a tendency to overextended ourselves trying to see too all the needs of our loved one, that we forget to care for self. When she is taking treatment maybe you go indoors and take a walk, maybe find a park to go sit and practice meditation or maybe somewhere to take a nap 😴 all in all we want our caregiver to stay healthy 😊. We love all that our caregiver does for us. Try some self compassion.

Thanks, Ted. My wife has been very private about all this. I had to get her permission to even tell her sister because they were wanting to identify potential donors. Our two kids know, our son was the donor and our daughter also sent in the kit. So, basically, it boils down to me. I wondered about PTSD! My wife had been writing her memoir before all this most recent phase started but she has quit writing. I know that part of it is lack of energy (she still sleeps a lot) and part of it is that she doesn't want to be negative... and there's not much positive in her world right now. Thanks for your response, it helps me to better understand what people experience going through the BMT process.

loribmt, yes, I communicate frequently with the psychologist assigned to my wife and my wife has talked to her a couple of times with no noticeable benefit. I talk to her (psych) because I reach out to everyone I can on her team all the time. As I said elsewhere, I can be annoyingly persistent! 🙂 I sent the psych flowers this week because I told her she's got a very difficult job listening to nothing but bad stuff all week, every week. She says it brightened her day. Yes, they have a portal and I'm the one who set it up and only one who has used it. Not much there. I can and have emailed her MD a few times and he's good about responding as was the coordinator who we dealt with before the transplant.

Honestly, I've always been her best source of support perhaps because I know how she ticks better than anyone else. I've never seen any counselor make any positive impression on her even before BMT. She was actually doing better when she was in the hospital in some ways, it appears, because she had people constantly coming in and out and that provided a distraction. As we approached retirement in 2018, we realized that she was going to need to FIND some form of distraction because she doesn't really have a hobby and hates games (cards, board games). We previously fixed up some rental properties and she obviously can't do that now but the thing she likes to do most is paint interior walls (I got to do the rest :-)). She used to like to walk through houses under construction but that's harder now.

I was mostly just wanting to hear from other patients what worked for them, not suggestions for me. I think, in the end, there's no easy way out and you folks have confirmed for me that it's just a matter of surviving one day at a time. Things will get better in time which is what I tell my frequently but it doesn't make her feel any better today.

As for the donor, it was our son. Thanks for your response!

Ok, Brad, now I’m getting a little better picture of you and your wife’s pre-transplant life and maybe in a position to give more appropriate answers to help out. First, It’s great you’re in contact with her physiologist and the flowers were a wonderful gesture. I’m also relieved that you are getting feedback and responses from her team so that you’re being informed as to what’s going on in her recovery.
From my perspective as a transplant patient, you’re doing everything right for your wife. What is her name, by the way? She sounds like a person who loves to be in charge of her life, energetic and enjoys physical activity. I can tell you right now at this phase in her recovery, it will take months for that energy to return. At this point, her hemoglobin count is low so any activity, even as little as walking from the sofa to the kitchen can deplete her energy in a hurry. So that is a big frustration to her I’m sure. Within another month, she’ll be amazed at the progress she’ll make!
The most important thing is rest. “Listen to your body” was the most difficult concept for me over the past year and even now! My nurses drilled that into me every day. It is a mantra on my shoulder all the time. Rest, is imperative. Her body has been through a traumatic shock and it will take time recover. She had to deal with the treatments for AML, the rough chemo for the transplant and now the transplant itself, along with all the medications running through her body. You mentioned the shaking from the Prograf. Yes, that is absolutely possible. It is often related to the amount in her blood stream at any one time. It is carefully monitored with her blood tests and because it’s early in her transplant the doses will be tweaked accordingly. Even other medications can cause it to stay in her blood stream longer so it takes a lot of adjusting to get the dose steady.
But in the meantime she may have those trembles. Believe me, I know! It’s disconcerting at first. But it will go away when she no longer needs it. I’m an artist and I can tell when my level is higher. I used to hate it but now I actually enjoy the wanky lines in my works. Lemons out of lemonade. ☺️
To pass the time away my first couple of months, I listened to a lot of audio books, though honestly it took repeated attempts as I’d nod off every single time! I tried to do crossword puzzles, spent time just doodling on paper and later used my little travel watercolor set. That was a great diversion. The most disturbing thing I did was to watch TV. LOL. HGTV...never watched it before but became hooked. Glad that passed. 😉
I set daily goals of how far I wanted to walk...and some days that meant as little as 1, 2 or 3 circuits around the rooms were I was staying. And, there were days where I lived 5 minutes at a time...if I could just get through 5 more, i can make the next 5. So your wife will run the gamut over the next few months but with you providing a steady support network you’ll both get through it.

One year ago today I was on day 13 post transplant. There was nothing anyone could tell say to me which would have me believing I’d be feeling as good as I do today! My life is pretty much back to normal and I feel as though nothing ever happened! Before AML knocked me off my feet in 3 weeks time last February, I’d been a healthy, 65 year old, walking at least 10 miles a day, exercised and was unstoppable. I’m now back to at least 6 miles daily though the pesky, “Listen to your body” has me taking afternoon catnaps which I never did before. So there will be adjustments ahead and the occasionally GVHD issues which pop up. They get handled and then life resumes. Your wife will just have to ride this out but there Is life after a BMT and it’s amazing!! She’ll come out stronger, more confident and amazed at what she has accomplished!

Just to be clear, I said I am in touch with her psychologist. 🙂 Maybe what you meant.

As for HGB, her former, weekly oncology "friends" were amazed at how she could go work out in her exercise class four times a week with her HGB below 8! As of Thursday, she was at 6.1 She's approached 6 before but I think the double whammy of the whole emotional ordeal plus low HGB causes her to be less energetic than she would otherwise be.

Yes, she was a pretty independent person, CPA and PhD. Now she can't remember what happened 30 minutes ago sometimes and I'm gladly doing most everything for her at the moment. She tries to do what she can and she's been going out twice a day with me the past few days for short puppy walks which is encouraging! She is getting better and today has been the best day in a week. I'm extremely encouraged!

Thanks for your feedback and awesome to hear how well you're doing!

My husband is coming up on 2 years in September for a Allo transplant for AML with FLT3 mutation highly adverse. He has had a couple of hiccups with GVHD but he is doing very well with no signs of the AML. Every person is different but if you listen to your team your wife should do very well.