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Acute myeloid leukemia (AML): What can I expect?
Blood Cancers & Disorders | Last Active: Nov 12, 2023 | Replies (137)Comment receiving replies
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.
Replies to "Hi! I am here to share a celebration story. In 2013, I was diagnosed with an..."
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.
Hello,
I was diagnosed with AML December 2022. I am overwhelmed and feel hopeless of living very long. Doctor told me 15 to 18 months on my chemo. Have consulted with 2 doctors and having a third opinion this week. The second opinion doctor told me that only 70 % of people who had a transplant will go to remission and then only 25% stayed cured. Not sure how old you are, but I am 71. Scared of whether I would even live though it. My daughters tell me to keep a good attitude, but its hard. I don't know where to turn right now and would love to connect with you.
Thank you, Jan
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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?