Anyone had successful stem cell transplant for AML?

He has some issues from being on high dose Prednisone that we are in the process of fixing now. At least that is what our transplant doc says. Lol. He just had his right hip replaced at Mayo this past Wed. Energy is good but due to the joint issues he's slow moving. Good spirits though and is chomping at the bit to get back to work.

Lori and Ted,
If you can, please help me understand what my wife is going through so I can try to be a better caregiver. She had her transplant 45 days ago and I was asking her to describe what was going on with her because she seems barely able to move very much and sleeps a lot. She said "I feel like crap!" I know you said the first couple of months are hard but it's hard for me to grasp what "hard" means since I'm not experiencing it. I remember Ted saying he walked to the end of the block but I don't know what phase of the process that was in. My wife can walk about 100 yards when we take the dogs out and has to sit. I understand that moving around is important and I want to encourage her but not push her. Thanks!

Brad- it’s tough to say because everyone experience is different. I dealt with severe GVHD in the first 60 and had a very rough go. And then the emotional/mental part isn’t easy. How did it feel? To give my experience - very tiring. Not a lot of strength or stamina. There were days when I didn’t want to take a shower or do just the basic walking 100 yards but most days I forced myself to do it. My wife met me where I was which I’m sure took restraint sometimes because she is a nurse. As a transplant patient - you want to get back to normal but you also don’t have as much ability to access the “want.” They say that fatigue makes cowards of us all & I think it’s because when you are so fatigued it Zappa your desire. Does it help to ask home you can best support your wife? And then just do that? You may have more “want” and desire than her right now and to you might be careful to make sure that doesn’t overwhelm her. Baby step are ok.

Thanks so much, Ted! I appreciate your insights to help me understand! I have witnessed what you say about fatigue zapping your desire and I think that's the central problem. I can't feel what she's feeling but I'm supposed to encourage her to keep moving and she typically isn't up to it. It's a very tough road and no way to avoid the difficulty of surviving it. Thanks again!

Hi Brad, I was thinking about you and your wife today, wondering how things were going. Day 45 is not unreasonable for her to still be feeling exhausted and unmotivated. There are patients who have a very difficult time regaining their full stamina and energy years later. As Ted has said, everyone’s experience is different. Our bodies recover on their own schedule. It can’t be rushed. It is discouraging sometimes because we get impatient to get back to normal! But if our body is craving rest and sleep, then that’s what it needs.

I know you’re familiar with her blood counts. Until her hemoglobin starts getting to a more normal number, 12.0 on the low end, she will have some very sluggish days. That will take quite a while to recover. She’ll do well even around 6 to 8 but will tire easily. I was fortunate in that I recovered fairly quickly and was walking 1 to 1.5 miles daily by day 50. (Looked back in my diary today) However there were days even after that where I just could not get out of bed and would roll my eyes at my sweet husband encouraging me to, ‘let’s take a little stroll to get the blood moving.’ I would remind him that my doctor and NPs tell me to Listen to my body; I am it’s telling me it just wants to lie here for now. ;-). Some days my skin would itch, or my feet would be hot. Just weird little things that would come and go. So there are always ups and downs that first 100 or so days. Things really turned around positively by day 60.

“Feeling like crap”... Those are familiar words uttered by me and several friends I met along the way who all had transplants around the same time. It’s not something we could really define either. Mostly it was the low energy, lethargy, doing anything was a challenge to get motivated. Similar to getting over the flu. Difficult to define but you get through one day at a time.

Ted mentioned days not even wanting to take a shower. I was the same way. It was a challenge, by the time I got the dry shield placed over my Hickman port, I was exhausted. Could barely wash my hair AND take a shower. Eating wasn’t normal because food tasted like nothing. That was still in part from my initial 3 months of chemo with the AML prior to the transplant. Nausea crept into the picture as I tried to wean off the zofran. Around day 45 we had switched from IV antifungal to oral meds. That threw off my tacrolimus level in my blood to a higher level, making me feel really lousy, weak, shaky. But that was rectified quickly and I was back to feeling “meh” instead of “blahhhh”. It’s all relative! LOL.
Your wife will just have to ride this out one day at a time. Maybe she can challenge herself to one little thing per day. but there’s no point in pushing as it may physically not be possible yet. Just let her set her own pace, stay supportive as I know you are.

I hesitate to write this in an open forum as I don’t want to discourage any potential transplant patients who might be reading this. Honestly, this period passes and life really does return to normal and we survive, thrive and have an amazing second chance at life! ☺️ I think there’s an exuberance in knowing we pushed through and survived! It’s a feeling like no other!! Stay strong, stay positive!

Thanks to all of you for sharing your experiences. I am due for a transplant in October and find your information so valuable. Stay strong!
Gretchen

Hi Gretchen! Some of our discussions get fairly meaty and I sincerely hope you’re not put off by some of our subjects. I really hesitate to reply so directly sometimes because it can sound overwhelming to someone approaching a transplant and not knowing what to expect. I was that way a year ago. But i love to research the heck out of things so that I’m better prepared as I enter any challenge. If you’re getting a transplant then you know it’s our only option for a full and happy life. That doesn’t come without some effort put forth by us recipients. But it is so totally worth the journey!
Where will you have the transplant? Your BMT-team will guide you through every step of the way and become your new family. They are incredibly supportive, do anything to keep you comfortable and healthy through the process and beyond. Learn to trust them.
My mantra through the entire adventure has been similar to yours... Stay strong, stay positive. You’ve got this!! Don’t hesitate to reach out on this forum or contact me with an private message anytime! Please keep in touch! I’m excited for you! Hugs.

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......

waveg, our son did his residency at Mayo JAX! 🙂 Hope you stay connected here as well!