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Things just got worse. Diagnosis is now acute leukemia (AML)
8 months ago I was diagnosed with low risk MDS. I had a bone marrow biopsy last week and my Doctor just call on the phone and said my MDS has progressed to acute leukemia. She wants to immediately get me started on a (I think she said)) low dose of some chemo and some pills for a week. She said the name of the pills but I was in shock and I don't remember the name. Maybe another week of chemo if necessary. She said hopefully it will put it into remission.
Does this sound familiar to anyone? We talked for at least 30 mins and she said a lot. Can anyone fill in the blanks not that I've come back to my senses? Thanks to all.
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@bettersleep68 Thats very encouraging to hear. Good luck in the future. Do you have any side affects?
@bettersleep68 That is great news for you. Quick question, you say you have been in remission since Aug of 2025, do you get regular blood tests? Did you start off with Chemo? If it does come back do you take Chemo again?
Hi @twitt1949 There's an earlier reply that I wrote to you in this tread. It contains a link to success stories with meds similar to what you'll be taking.
Here are some links to conversations with @lindagi who posted this discussion and joined by @sonieaml @dancouclanel4 and others.
AML successful treatment https://connect.mayoclinic.org/discussion/aml-successful-treatment/
But also please take the time to read through my reply as it contains some info that you might find encouraging! https://connect.mayoclinic.org/comment/1627228/
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3 Reactions@twitt1949 ..yes I get blood labs every month and see my oncologist monthly. I do get nauseated when I first took the injections...so now I take the nausea pill 30min before treatment..i did start off with chemo...i had mds that turned into aml...it is a journey but I am thankful for my outcome...prays for you as you start your journey
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5 Reactions@bettersleep68
I have posted a few posts here concerning my husband who retired at age 72 in 2023. Eight months later he was diagnosed with MDS/AML. Mayo confirmed AML. He has been on azacitidine chemo shots every 5 weeks since. He started labs twice a week, but for the last year it is only one time weekly. At his worst, he was 130 pounds from 180, but today he is 160 (hallelujah). It has been a very long struggle, but two years ago, his doctor determined it was the IDH1 chromosome that was mutated in the bone marrow. He started on a new targeted treatment called Tibsovo (Ivosidenib) It costs $32,000.00 monthly. Insurance pays $30,000.00, and our co-pay is paid by a donor grant from the hospital. I don't know what we would have done without that. This treatment is what has made this turn in his AML for the better. He will probably continue this treatment and his chemo shots indefinitely, but it is keeping him alive.
He was very athletic, active, and in the best of health before AML. Now, he gets tired easily and isn't able to do most of the chores he used to, but he has learned to do what he can, take breaks in between, and be grateful for what God has given him. He is a testimony to our family and friends.
I pray as your start your treatment that you can find some peace in it, and that your life will be purposeful and a testament.
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12 Reactions@loribmt Thanks Lori....Somehow I must have overlooked your posts. Very encouraging.
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1 ReactionAnyone newly diagnosed with Waldenstrom
Hi @mv1953, if you use the group search function, you will find many discussions and members talking about Waldenstrom’s Macroglobulinemia.
Here are the results of the search for other members with WM
https://connect.mayoclinic.org/group/blood-cancers-disorders/
I see you posted a new discussion regarding your diagnosis. I'll meet you over there. 😉
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