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

Hi @naf254 Welcome to Mayo Connect. As a survivor of AML, I’m really sorry to hear that your niece has been diagnosed with leukemia. It can be a challenging cancer but there are some very encouraging and positive stories in our AML support group.
@colleenyoung mentioned a few of the active members, along with myself who have had our experiences with AML and also received bone marrow transplants to keep us in a durable remission. We’re all at different periods in our journeys. @jan8 @alive @edb1123 have shared their stories in this group.

I don’t know the age of your niece but I also had the pleasure of being a mentor to a young woman, who was 19 when diagnosed with AML. She and I had the same diagnosis and mutations which made our AML similar. We’re 46 years apart but shared so much in common.
Her name is Sky and she also had a bone marrow transplant over a year ago…she’s doing amazingly well. I thought you might like to read about our inspirational story:
https://connect.mayoclinic.org/blog/about-connect/newsfeed-post/mayo-clinic-connect-brings-together-2-women-with-leukemia-46-years-apart/
What treatment is your niece receiving now?

Hi Lori, Thanks for checking on me. I did get a third opinion at Northwestern Memorial Hospital in Chicago several weeks ago. I have definitely decided from the beautiful responses and encouragement that I got from this site, from you and others, that I do want to have the transplant. Just need to decide when and that is the scary part. I'm not in a situation right now where it needs to be done immediately. The oncologist that I want to use told me I have time. But I would like to know right now if I have a bone marrow match. Can't I find that out now, so I know, or do I have to wait until I'm ready which may be 9 months from now.

Hi Jan, The third time was a charm. I’m glad you got a 3rd opinion and that this oncologist is working with you so you can go ahead with the transplant. At this point in time, the bone marrow transplant (stem cell transplant) is the only possibility of a long term cure for AML. It is well worth the experience to have that opportunity for a second chance at life. ☺️

As far as finding out if you have a donor, that’s something you’ll have to wait for until you’re ready to commit. When you decide to go ahead with the transplant, at that time you’ll have bloodwork done for a full DNA analysis. Then the search begins. I’m not sure what stem cell search program Northwestern uses but there are several procurement agencies. My cells were found through Be The Match Foundation. Most of these registries are world wide. All the critical DNA-HLA components of your genetics will be run through a data base to find someone who matches you 10 out of 10 biomarkers. Or very close to that.

From my experience and sharing stories with others, the healthier you are going into transplant generally you have a much easier time during recovery.

You’re facing multiple months of chemo with your current treatment plan. That would most likely not be required any longer if you went ahead with the transplant sooner. For most of us with AML who go on to transplant we have an Induction round of chemo, (7+3) then one or two consolidation rounds of chemo for a week, every 28 days. Then immediately into transplant by the next month.

What is your treatment going forward until you’re ready for transplant? Do you have any mutations involved in your AML?

I agree with Lori and wouldn’t put off the transplant, if all possible. Very often with AML, after a while the chemo stops working. You want to be able to get the transplant while you are in remission.

It’s a big decision, I know! Wishing you the best as you go forward.

With acute Myeloid leukemia. Anyone out there that has survived this ? That is “elderly “ as they say

Hello @joycek the answer to your question: Anyone out there that has survived AML, that is elderly? Well, let’s just say…50s, 60s, 70s. Yes! I’m one of them, along with @alive @edb1123 @kt2013 and several other members. We’ve all required a bone marrow transplant after our initial treatment for AML, which has helped to put us in an enduring remission. We’re all here to offer encouragement and will answer any questions you have.

I also personally mentor several other patients at my local cancer clinic who have been diagnosed with AML. One woman, who is in her 50s didn’t have any mutations which can complicate treatment, so she didn’t require a transplant. She’s 2 years past diagnosis and doing fabulous after a few rounds of chemo.
3 other people I mentor are all in their late 60s, early 70s…required bone marrow transplants ( they are also stem cell transplants) and again, they’re doing really well.

Here is a link to a discussion full of conversations with members who have AML. You can reverse the order of the discussion from newest to oldest to get the most current replies.
https://connect.mayoclinic.org/discussion/can-someone-address-acute-myeloidal-leukemia/
AML has a tendency to just show up out of nowhere and clip you right off at the knees without warning. That’s what happened to me too. The day after my 65th birthday was the first day of my symptoms. That was 4 years ago. I’m now 65, healthy, active and enjoying every day with my second chance with life. So yes, it is possible to get through this and you have a great group here who will help you along every step of the way.

Are you undergoing any treatment yet? Have you found out if there are any mutations linked with your diagnosis?

I was in the hospital for6 days. I anm home now and meeting with a dr from Moffett center who specializes in this hoping to start treatment right after as I know time is of the essence.

Great to hear your progress an success in beating AML I have MDs an possibly moving to aml an been told I can’t have stem cell transplant so I’m on chemo Inqovi an hoping it works

Hi Howard, If I remember correctly I think you had the first round of chemo beginning March 20 so that means you’re getting ready for another session in a few days. Usually with monthly chemo, we start feeling pretty good again by the end of the month, just in time for that second round. I know…not something to look forward to, but at least now you know that there’s a recovery period. 😊

How are you feeling? Have you had any bloodwork done to see if there’s a change in you numbers?

Good morning, @joycek Yes, with AML, time is of the essence to get the proliferation of white blood cells under control.

I don’t know how much you’re wanting to learn about what you might expect next, but it can be better to be armed with some information so you’re not blindsided. I’m happy to give you some quick notes about what you might anticipate for treatment if you’re interested.

Do you have any questions specific questions? Have you already had a bone marrow biopsy?