Anyone had successful stem cell transplant for AML?

Hi, Lori and Gretchen: I read your recent exchanges and thought I would chime in. I am at Day +86 from my BMT for AML. I was at the Mayo Clinic in Rochester, MN and lived there until Day +78 when they let me move home. My side effects from the conditioning chemo were some nausea/vomiting occasionally (not to often) and diarrhea. Both have continued but aren’t as bad. I also had a fever of 101 and a rash post-transplant, so they put me back in the hospital for about 10 days to get things under control. However, I have had very minor side effects since then so I didn’t have to stay near the Mayo for the full 100 days post-transplant. Now I am feeling good, don’t have much fatigue, and am able to walk 2 miles without getting too tired.

My question to Lori - how long has it been since your transplant? I am curious to hear your post-transplant story, as I am wondering what may lie ahead for me! I know everyone’s experience is unique, but I am still interested. Thank you!
Elaine

Hi Elaine. Congratulation on your transplant! Sounds like you’re doing really well and progressing nicely. I just returned from Mayo-Rochester 2 days ago after having a routine check in with the BMT-team. Always feels like we’re returning to the Mothership when we drive into the city. We can’t speak highly enough of the outstanding care and treatment I received while there...and it continues just as earnestly with follow up.
I’m at Day 476...about 15.5 months post transplant~late June 2019. DefiniteIy experienced the lovely and somewhat lingering side effects of the earlier chemo for AML and the conditioning for the transplant for the first few months after. All of that has completely disappeared and I am feeling 98% like my former self! Walking around 7 miles or more per day, energy has returned to normal, desire and ability to eat has made a welcome comeback! Yay!! Nausea was pretty routine initially; handled nicely with the meds. Looking back on the little journal I kept, the nausea lessened after the first month and was pretty much gone around day 60? But I had little appetite and food tasted like cardboard for several months. Anything spicy or too flavorful gave me heartburn and didn’t appeal until after day 100-ish. I remember asking my team if I’d ever be able to eat pizza or tacos again. They laughed and assured me I would but I remained doubtful at that time! LOL. They were right, as usual...😉 I had no other intestinal issues. Everyday I had a cup of yogurt mixed with ground flax throughout all of my AML chemo/transplant recovery. Seemed to really keep things calm in the ‘nether regions’. I’ve put some much needed weight back on and my hair is growing. I no longer look like a character on the streets of a Dicken’s novel. 😂 I also think daily walking/exercise is key to recovery.
Not wishing to go into great detail on this open forum as Gretchen and others are just coming up on transplants. Each of us have our own experience so I hesitate to be specific. Just as I told Gretchen, there were a couple of ‘less than peachy’ days but they were brief and quickly taken care of by the most empathetic care teams. But most of my post transplant was what my doctor referred to as, “unremarkable”. I was happy to be considered boring! LOL Experienced no GVH issues until late October last year when we dropped the tacro level. Then I had some tendonitis develop in both hands and wrists. A quick burst of steroids handled that situation. There have been a few other occasions but again handled quickly and are gone. We Chimeras are a hearty lot. Since there is little predictability how each of our bodies will react, it’s important to keep a sense of humor, sense of adventure, and a positive attitude!
Feel free to contact me with a private message through this forum. Then you and I can chat about whatever you’d like to know. Stay safe!

All good news. Happy for you. Getting a second chance for a normal life is the goal of all of us who have a blood cancer.

Lori and Elaine, Thank you for letting me know your experiences. Good and bad, I’d like to know it all as I’m sure others on this forum will. With covid, the patients here don’t have a chance to chat about how we’re doing so this forum is such a nice connection for me. Today and the next 2 days are heavy chemo for me but my Mayo team is keeping me feeling great. I feel like it’s time to go and walk the dog! Gretchen

I should add, I’m 62 (63 very soon) and receiving BMT for MDS.

Thank you for sharing your experiences, Lori! I agree with you that exercise is important and keeping a sense of humor and positive attitude are important. We try to take one day at a time and not think too far ahead - just deal with things as they happen and not worry about what might happen. So far, that has worked well for us.

Lori, I would like to contact you outside of this forum. Can you tell me how to do that?

Thanks!
Elaine

Well, Gretchen, there’s a lot more to tell that I haven’t! LOL Sometimes ignorance is bliss. Honestly, every one of us has a different experience. My second week after transplant was the worst with mucositis in my mouth and throat. Not everyone has this so I hesitated to write about it. Was readmitted to the clinic for a week on a fentanyl pump. Slept 5 days away and woke up one morning to feel perfectly fine and on my merry way. Engraftment happened and the white blood cells charged to the rescue. Reversing the nastiness in my mouth! That was my less than peachy week.
After that things went well outside of the persistent but expected nausea. I’m a walker, having walked 4 miles a day pushing my chemo trolly around the halls during AML and pre transplant. After transplant, walking was an effort and used a wheel chair to get from where we were staying a block away to get to the clinic.(Mayo Rochester is linked via tunnels to most hotels and businesses around the clinic. Really convenient). Transplant patients are actually outpatients which really speeds up the recovery time. Anyway, it took a couple of weeks before I could do the walk to the clinic and back sans chair. My Rocky Balboa moment was running up a long flight 2 months later after returning the wheel chair to the clinic.
Tiredness and weakness will be your companions in the following weeks. The most difficult thing I had to learn and was told to me over and over, was/is... Listen to your body!!! Never having been a idle person, it was difficult to not feel guilty lying around all day watching tv, reading, etc... but if you overdo the activity your body WILL let you know about that the next several days. LOL So REST and recover slowly. You’re getting someone else’s DNA in your body. You’re also having to recover from the conditioning, all the new meds, etc... So do remember that and give yourself time to recover. This is a big deal! But wow, when you recover and realize what you’ve gone through???!!! It’s the most exhilarating, liberating and amazing experience. The spirit of endurance!! (I’m 66. Developed symptoms for AML the day after my 65th birthday, January of 2019)

Elaine, I think if you click on my name. @loribmt it will take you to a reply page. There should be a link with a little envelope icon that says Send Private Message. I haven’t always had good success with that. So try it out and hopefully we connect that way. I should see a notice in my personal email linked to this patient connect site. Then I can give you my email address personally to continue.

Thanks, Lori. I followed your instructions. Please let me know if you received my email. Thanks! Elaine

Yes I did! Thanks. Responded so we should be good to go!!