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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 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.
Replies to "Hi Lori, Thanks for checking on me. I did get a third opinion at Northwestern Memorial..."
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.
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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?