Connect
← Return to Acute myeloid leukemia (AML): What can I expect?
Discussion
Acute myeloid leukemia (AML): What can I expect?
Blood Cancers & Disorders | Last Active: Nov 12, 2023 | Replies (137)Comment receiving replies
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
Replies to "Hello, I was diagnosed with AML December 2022. I am overwhelmed and feel hopeless of living..."
Hi Jan! I’m sorry to hear about your diagnosis. It’s a tough diagnosis and treatment options can be difficult to navigate. When I was diagnosed with AML seven years ago, I didn’t know anyone with the same diagnosis. I didn’t meet an AML survivor personally until sometime after my transplant. It’s hard to walk through that darkness without support. I’m glad you reached out here!
I’m not sure where you are receiving your treatment. With a diagnosis like this, I recommend reaching out to the top medical center close to you that treats a lot of patients with leukemia. I was diagnosed at a pretty good size hospital in Indiana, but the oncologist who broke the news to me told me that my best chances of being successfully treated were 3 hours away. That recommendation lead me to a transplant center. The transplant saved my live!
I was diagnosed with AML 10 years ago, had a transplant and have been in remission ever since. The hospital transplant review doctors questioned whether I could get through it at almost 65, then decided it was reasonable based on my strength and stamina. This AML & other cancer lessons learned over 31 years are in 4 minute YouTube videos. Search Patient 007 myeloma to view.
Connect
Hello, @jan8 Welcome to Mayo Connect. There are several of us in the forum who know exactly what you’re going through and we’re all on the other side of AML now. We’ve each had a bone marrow transplant and are doing wonderfully well.
I was diagnosed with AML, with FLT3 and 2 other mutations, making it a challenge to treat. That was 4 years ago Feb 2019. After 4 rounds of chemo I had my transplant the end of June that year. I had no option to be on extended chemo. It was a transplant or pushing up daisies. I was 65 at the time and now I’m 69 and living my best life!!
I’m mentoring 2 patients right now in my hometown, who are both in their early 70s and have just had bone marrow transplants.
It’s worth getting an opinion with a larger hospital or clinic which specializes and routinely does stem cell/bone marrow transplants. Honestly, in my opinion, it’s not a walk on the beach but it is a heck of a lot easier than 15 to 18 months of chemo!!
I’d like to introduce you to a few more members who have also had AML; @alive who had her transplant 7 years ago, @edb1123, who’s coming up on her 3 year re-birth day and @kt2013 who just celebrated 10 years post transplant!
This is overwhelming, I know! But you’re not alone and can ask us anything. I’m not sure where you’re located but here is the information to request an appointment at Mayo Clinic.
Click on the link and it will open to the main page of Mayo where you can select the campus nearest you for a 2nd or 3rd opinion. You have nothing to lose and everything to gain. http://mayocl.in/1mtmR63
How are you feeling after a couple months of chemo?