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AML successful treatment
Happy New Year! I want to share a happy treatment update for my wonderful response to Venetoclax and Dacogen (similar to Vidaza) for treatment of my AML. When I was diagnosed 3 years ago I was considered too old for transplant at age 78 here at the Mayo Clinic. I went into remission after my first cycle of treatment and have now stayed in remission for 3 years. My treatment has been ongoing and my team here has tweaked my routine several times to reduce side effects. Currently I am on a 5 week cycle of Venetoclax for 7 days at the same time I get Dacogen infusions for 3 days (recently reduced from 5 days). I will continue on some treatment routine as long as it is working. In the meantime I am enjoying a full life with family and friends although still taking precautions (weekly blood draws, avoiding folks with colds, etc.) .
I have learned a great deal throughout this period, including the variability of patient responses that can occur due to so many factors (genetics, other health conditions, etc.). I have also learned that there is at least one other patient here who is closing in on 5 years of remission with a similar routine! I am sharing my story to encourage you and wish all of you good outcomes as you face your treatment challenges.
Linda
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@loribmt hi , I hope you are doing well !
Firstly, I am sorry for late reply.
It's a while since we changed the treatment plan a little. We have moved to a governmental hospital to take his under social insurance where they don't provide Vidaza , we take ARA - C instead, with venclexta. Unfortunately after 3 cycle, his body doesn't respond positively: WBC got high numbers greater than 55000, blast cells 91 % .
1 week ago , we also changed the treatment plan to use combined ADRYAMAYSEIN 1 dose each 14 days and a 14 consecutive dose of ARA-C AND STOPPED entirely The VENCLEXTA, but count is still increasing, doctors seem to have no additional solutions.
Another important note, He caught a cold, cant stop coughing, which effects him badly in absence of immunity.
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1 Reaction@tawakol Oh golly, this wasn’t the news I was expecting to see about your dad. AML can be such a tricky beast and treatment isn’t a ‘one size fits all’; What works for some patients may not be the magic for others. We’ll be optimist that this new treatment plan will help reduce you dad’s blast cells and get him into a more manageable situation. Don’t lose hope…my blast cells at the time of diagnosis were 85%.
What an unfortunate time to get a cold. Keep an eye on his temperature if he’s at home. Like you mentioned, with his lack of immunity he is very vulnerable to infections. So if his temperature gets to 100.3 make sure there’s a call into his oncology team for direction. That can be an indication of an infection.
Sending you a hug in support. I know this isn’t an easy time as a caregiver. When you get a chance, please let me know how your dad is doing on his new treatment, ok?
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