Anyone had successful stem cell transplant for AML?

@tedwueste, Since you are a new member on Connect, I would like to help you to get started some tips on how to be a contributing member of a community that works — a safe space where members support one another and together we help improve our health and well-being.
Tips for Participating in an Online Community
https://connect.mayoclinic.org/page/about-connect/newsfeed-post/tips-for-participating-in-an-online-community/
I am a liver and kidney transplant recipient, and I look forward to learning more about stem cell transplant from your viewpoint.

Hi Friends - I had an allo stem cell transplant in April 2019. I am still on the road to recovery and also feeling better than I’ve felt in years. Dealing with Hodgkins Lymphoma and then Acute Myeloid Leukemia, the transplant itself went well but I also have dealt with chronic graft versus host disease of the gut and mouth. I developed several other problems as side effects of treatment such as some heart damage and blood clots. If I can be an encouragement to anyone, I’m here. While I am still dealing with some of these things as well as what we think is medication related anemia, I am in a good place. Send me a message and I’d love to dialogue. I would love to help others in any way I can.

Hi @tedwueste, I'd like to add my welcome. You'll notice that I moved your message to the Blood Cancers group (https://connect.mayoclinic.org/group/blood-cancers-disorders/) to this discussion about stem cell transplant for AML. I think @bradmm will appreciate hearing your experience. Here you'll also meet @loribmt @lakegirl409 @kjjjrader and others.

Ted, can you talk more about the heart damage and blood clots? How are those being managed?

Ted, my wife had her allo stem cell transplant on June 9 after chemo for AML. Previously diagnosed with MDS and CLL. She was released from the hospital on July 1 and is now at home. She's having lots of trouble with the emotional end of this and goes up and down everyday. When you saying that you're feeling better than you've felt in years, do you mean physically? I don't think my wife ever felt bad physically other than a little fatigue but was going to the gym 4 times a week back in January before her AML diagnosis that put her in the hospital for the first time this year. BTW, where are you located, what hospital did you transplant?

Hi Ted and welcome to Connect. You’ll find this a really great outlet for shared stories from people who have walked the walk. We’re very supportive, understanding an empathetic. I recently celebrated my first year transplant birthday June 2019 so we’re not that far apart. That was about 4.5 months after my diagnosis and treatment of AML. I’ve had some issues with GVHD but not the heart damage and any blood clots. Though I do believe a lot of our recovery and what we experience can be related to what our body’s were like before we had the transplants; preexisting conditions. I’m so happy that you survived the Hopkins lymphoma! But a nasty surprise with the AML! But, better living through chemistry, huh. ☺️ The chemo for both AML and transplant can be rough. Especially that week before transplant with what we jokingly referred to the “mother of all chemos’. LOL. But you’re right, it is amazing on the other side! Staying positive, having a great sense of humor and sense of adventure keep us going daily! After all, how many of us can say we have 2 sets of DNA, switched blood types and are little Frankenstein’s monsters. Hehe. Sounds like a plot for a great book! Stay strong!! Lori

Loribmt, I pm'ed you as you suggested! 🙂
My wife will get test probably Monday for the percent of her blood is hers or her donors. I guess that shows how well the donation grafted...?

Hi Brad, I just sent you a message PM. I sent a lengthy reply the other day too. Did you receive it? It was in answer to your private message the other day! Sounds like your wife will be getting a chimerism test. This is essential to find out the percentage of her blood vs donor. At this point she should be showing 100% donor blood and 0 %host. And also it will show 100%Donor DNA and 0% host. At some point soon she’ll most like have another bone marrow biopsy. Usually around 30 days after the transplant. Let me know if you haven’t received my replies on our PM. You should have two from me now. I just sent one about 10 minutes ago. You’ve been on my mind and wanted to check in on both of you. I had an idea about some mindfulness methods which might help some morale issues. Take care!

I experienced some damage to my heart from ABVD chemo for Hodgkins and the the chemo I did for AML caused problems as well. My ejection fraction went down significantly and I ended up in the ICU with heart failure while in-patient for chemo. I am taking a couple of blood pressure meds daily and checking my blood pressure twice each day.

The blood clots were a surprise - my port clotted and they had to remove it soon after admitted for AML chemotherapy. I clotted a couple of other times and was able to manage with a shot twice each day and then eliquis. I went off the eliquis three months after my last line was taken out in nov. Then, a few weeks later - I developed deep clots in my arm. Now, I’m back on blood thinners and likely will be for the rest of my life. I’d never had any clotting issues previously but the docs think I may have a genetic condition that was triggered by all the ports and lines I’ve had over the last three years. Still a bit of mystery.

When I said I was feeling better, I meant physically but I am also doing well emotionally. For me, I was a marathon runner and in great shape before all of this started 3 years ago. Now - my body is a mess even I fell like I’m getting better. My experience with marathon running has helped because all of this treatment is like running a marathon. It’s not a quick sprint to feeling better but a long haul. My emotions have been all over the place - especially before, during, and after transplant. For me - contemplative, meditative prayer has helped me allow my emotions to be present but interact with them the way I’ve interacted with my body feeling like crap. They are there but it’s all a part of the process.

I live in Phx and my treatment has been at the Mayo hospital here.

Well, a little more background. I am 50 years old. Married to my wife of 28 years who is a nurse at Mayo. Two adult children - 18 and 20. They were 17 and 14 when I was diagnosed. Had to miss a lot of my sons senior year of high school and all that entails.

In Oct 2017, I was diagnosed with Hodgkins Lymphoma. We thought it was fine after 12 rounds of chemo but about 6 weeks later it was back. More chemo leading to an auto stem cell transplant. The transplant failed because my stem cells were no good. After trying to extract, it was discovered that it had failed because I had developed AML - likely related to my previous chemo treatments. Was admitted immediately and went through the hardest chemo I’d experienced. Blood clots, heart issues, on oxygen, my GI tract was a mess.

I made it to transplant and all of that went well in comparison but had to be hospitalized two more times for a severe case of gvhd. Was finally sent home and had to receive liquid nutrition for about a month because my gut couldn’t tolerate any food.

This led to 6 months of photophoresis to deal with the gvhd. Was also hospitalized again during this time for double pneumonia related to getting legionnaires disease.