Acute myeloid leukemia (AML): What can I expect?

Happy 10th Rebirthday to kt2013! I am looking forward to celebrating my 3rd Rebirthday on July 22nd! Lori, I loved your comments about your male donor! I had a 20-something female as my donor so I tell people I’m in my 20’s again! 😁

My advice to anyone who is going through AML is to take one day at a time and focus on what you need to do that day. It’s like a job, you just keep at it and get through each day. As my husband and I would say, what choice do you have?

I was diagnosed at age 60 and had three different regimens of induction chemo before I got into remission, which took almost 6 months. Then we relocated to Rochester, MN for the transplant and follow up. I got pneumonia in late 2020 and went into respiratory failure, which they determined was GVHD, and spent 17 days in the ICU. Since then, I’ve had a couple bouts of high liver enzymes, one which required hospitalization, due to GVHD. I was so lucky to have a great BMT team at the Mayo Clinic!

The good news is that I am golfing about 75 rounds per year and have become an avid pickleball player, so there is hope for living a normal life on the other side of AML! Just keep fighting, take it one day at a time, and never give up!

I’m so sorry to hear about your friend! I was diagnosed with AML seven years ago. I was not given much time to live unless I received a stem cell transplant. I went through a lot of chemo to prepare me for the transplant. I’m here today because of it.

I did participate in a clinical trial, but it was during the transplant to try to prevent GVHD.

Is stem cell transplant an option for your friend?

I am trying on to overstep trying to help right now, just try8ng to give her the info I find to add to the questions for her doctors so she will have an idea of what is available out there and if she would be a candidate? Thanks for your info.

Hi. Happy to share this information. My treatment included alvocidib (formerly flavopiridol), cytarabine, and mitoxantrone (FLAM).
Best regards!

I’m curious about your clinical trial medication too and wondering if I might be the one of the lucky recipients of the results of your test run.

I had AML with the FLT3 mutation along with 2 other mutations and received the standard 7+3 induction for initial treatment. But was also on the abrogating, targeted drug for FLT3 called Midostaurin. It was originally designed for patients with solid tumors but found to be a really solid drug for AML patients with the FLT3 mutation.
https://www.nejm.org/doi/full/10.1056/NEJMoa1614359
@jeanadair123 I’m really sorry to hear about your friend’s rough time with this aggressive leukemia. The odds weren’t in my favor either but here I am 4 years later and in a very durable remission from AML. I wish her all the success in the world with this next step. There are several of us here who have had AML and more than willing to talk anytime.
Keep us posted, ok?

Hi. I am sorry for your friend’s diagnosis. The clinical trial I was on was through the Mayo Clinic and is now completed. It was specifically for patients with the FLT3 genetic mutation. I know there have been many good clinical trials developed in the past 10 years since I was diagnosed. From my experience, I was glad to participate in a clinical trial that might provide me with at least the best treatment available or potentially the next generation of treatment. That made it a win-win decision for me. Please send my best wishes to your friend.

My friend was recently diagnosed with acute aml leukemia. Might I ask what clinical trial you were enrolled in and where? She is having a real time with this, she is being sent to UCD Davis for a clinical trial and was told by the doctor hat she may only have a few months left. Any info I could pass on would be appreciated. I’m so glad to hear of your outcome there is lots of hope out there. Thank you.

Hi @kt2013 and happy 10th Re-birthday! That’s a huge milestone and always so encouraging for those of us younglings who had SCT/BMT. How wonderful that your sister was your donor! I had to laugh about her love of fancy shoes and hot sauce not rubbing off on you. I’m a ‘woman of age’ and my donor was a 20 year old male. My husband was waiting for me to develop an urge for cheap beer, greasy pizza, Axe pit spray and girlie magazines under the bed. 😂 It will be 4 years the end of June and so far, nope!

Welcome to Mayo Connect! There are several of us that I can think of off hand who have had AML and an allo transplant. I’ll tag fellow members @edb1123 @alive @tmvanla @tedwueste @waveg @anieke so you can meet them.
I started a discussion you might like to join where a handful of us have shared our transplant stories. Not everyone had AML but we all needed the generosity of a donor to make it through…
My Bone Marrow Transplant (BMT/SCT) story: Will you share yours?
https://connect.mayoclinic.org/discussion/my-bone-marrow-transplant-bmt-story-will-you-share-yours/
Not sure if you’ve experienced any GVHD in your decade with a new immune system. There is another discussion for those of us with varying levels of that fun side effect.
https://connect.mayoclinic.org/discussion/chronic-gvhd-lets-talk-about-it/?pg=2
And finally, this group is fun! Feel free to post a photo that wouldn’t be possible without your transplant! ☺️

Snapshots of hope: Life on the other side of transplant
https://connect.mayoclinic.org/discussion/snapshots-of-hope-life-on-the-other-side-of-transplant/
I feel exactly as you do! At the time of the AML/Transplant I could not imagine the life behind all of that medical drama. But it has been an incredible experience and I feel I’m all the richer for it. I’ve met incredible people, new friends, a respect and admiration for medicine, a strength I didn’t realize I possessed and I found a place in Connect where I can help others along their cancer/transplant odyssey. I’m so happy you’ve joined us as well.
Have you experienced any GVHD?

Hi! I am here to share a celebration story. In 2013, I was diagnosed with an aggressive form of AML. I participated in a clinical trial to get the most promising treatment at that time. And I was blessed to have a near perfect match for a stem cell transplant from one of my sisters. She gave me 5+ million healthy white blood cells which became my new immune system. She loves fancy shoes and hot sauce, but I did not get gain those traits.
This year, like every year, I am celebrating another 365 days in gratitude for each sunrise and sunset and every hour in between. When my whole life changed, I could never have imagined the blessings that would follow the worse year of my life. If you need someone to talk to about your AML journey, reach out. I would love to connect with you. Best wishes.

I agree that chemo for AML is brutal! I had 5 rounds of chemo before I had my transplant. The recovery from each chemo round was slow and I had all the symptoms you described. Your body will recover from those symptoms. Make sure to talk to your doctors about what symptoms management may work for you.

My skin also became very thin and dry. I went through a number of different moisturizers before finding one that worked for me.

While I was recovering from all the treatments, I had to evaluate what I had control over and what was completely out of my hands. (A lot was out of my hands!) My mental recovery started when I began walking. At first, I only had enough energy to walk for 5 minutes. After a few months, it increased to 1,5 hours a day. I was living in Michigan then and did a lot of my walking in my living room, since it was in the middle of winter. I also could focus on nutrition and needing to get more protein into my diet.

Recovery is a long process, but do what you can today to strengthen your body.