I am in remission from AML and my last MRD blood test showed no mutations. My latest weekly blood draw showed my ANC and platelets in the NORMAL range; first time since my diagnosis in March 2024. I elected not to go the BMT route and decided to go on maintenance after my induction therapy. We are each individuals and respond differently to the same treatment. Through many rounds of chemo I am now down to one day of Dacogen and 2 days of Ventclexta every 28-35 days; this combination has me in… read more
Answer Summary
Members shared what remission looks like for them while living with AML, offering a range of experiences from a 38-year survivor of a bone... Read more
Mavrick let me know if changing the schedule helps, please! Currently I get teeated every 5 weeks.
I just met with my Hem/Onc this past week. He mentioned a few options one of them being pushing out my treatment schedule. Also possibly cutting back 1 day on the Venetaclax. However before we do anything he will review the results of the MRD blood draw I had at his visit and he has scheduled me for a BMB which will happen on 12/5. I did not know that new mutations can develop even while in treatment for AML! Every day is a school day…or like my friend says “it’s like playing Whack-a-mole” you figure out one treatment and something else pops up somewhere else. For now I am grateful for each and every day and that I am able to do what I enjoy and be with the people I love! Best wishes and please keep me posted on how moving his treatment schedule works (hopefully with better numbers)!
Sonia2, I’ve had aml since December 2016, walked out of the hospital 5 months later then home a few days and back in the hospital hospital,. Went into remission, not fully though. Numbers slowly came up after 5 months. Went back to work full time on crude oil pipeline systems and still working. I have never had good numbers compared to a healthy person, sometimes close though. However my cbc labs look like stock report charts , up/down and crashes. If platelets drop below 70, I’m not allowed to work.
My “new normal” still keeps me physically active , just when my counts are down. I must slow down to stay out of trouble.
If our Lord wakes me up I’m going to give my best effort to have a productive day. With aml, I burn 4500 calories daily and enjoy the daily challenges life brings.
Stay blessed Sonia and it’s one day at a time
I understand your curiosity about how long our “maintenance” treatments can continue. I was given the option to stop treatments. However I feel that although both the MRD blood test and the BMB are great they are not finite. So any “chance” of mutations still existing is enough for me to stay on maintenance. Especially since I am tolerating the treatments so very well. That is my hope and prayer for everyone where maintenance as an option.
UPDATE
Saw my Hem/Onc yesterday. Still waiting on the FLT3 mutation BMB results however all other results look good. No evidence of AML showing up. Numbers may be slow coming up as a result of 19 months of treatment. We will stay the course for now. I elected to keep the weekly blood draws and we will keep my treatment scheduled for 12/23. The New Year may bring in extending weeks between treatments OR reducing Ventclexta. Best wishes to all on this site. On to 2026 with prayers that science and technology continues to find new and better ways to treat all cancers!
UPDATE:
My AML is in remission! However my BMB in Dec ‘25 revealed SF3B1 mutation which is an indicator of MDS. My Onc/Hem thinks my low numbers maybe related to this newly found mutation. My treatment plan has changed from port chemo (Dacogen) and pill (Venetaclax) every 42 days to INQOVI which I started 6/23 one pill for 2 nights every 42 days. However it appears for this 1st cycle I will have blood draws weekly. Keeping my port! Prayers for all dealing with a cancer diagnosis/treatments!