AML successful treatment

Posted by lindagi @lindagi, Jan 6 8:19am

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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Lori, Volunteer Mentor | @loribmt | 14 hours ago

In reply to @tawakol "@loribmt hi , I hope you are doing well ! Firstly, I am sorry for late..." + (show)

@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?

tawakol | @tawakol | 19 hours ago

In reply to @loribmt "Hi @tawakol, It’s been several months since we’ve spoken. I just wanted to check in with..." + (show)

@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.

mortysdad | @mortysdad | Oct 6 4:13pm

Hi Linda, I am 70 and have 3 mutations, Tet, ASLX1, and Jak2. I did not know anyone could have more than me, but sounds like your husband found a few more! Can I ask how long it took him to move into AML from initial MPN diagnosis? My ET diagnosis was almost 3 years ago and I have been on Pegasys ever since. Wishing you both God's favor in all this.

justjoan11 | @justjoan11 | Oct 5 10:36pm

Linda, what a joy & blessing to hear part of your journey. My 74yo husband was just diagnosed 31days ago with AMML & 5 mutations. In his case, we are doing chemo cycles until he has the BMT. I wish you continued success. I trust my husband will share your good fortune.
Love & light
Joan

jacklyn | @jacklyn | Oct 5 2:49pm

Thank you for all your replies. It gives me hope. Also to Laurie who is always there for us. She is a blessing sent to us by God.

sonieaml | @sonieaml | Oct 5 11:49am

In reply to @jacklyn "This is so encouraging. I am On venetoclax snd vidaza. I just finished my first 5..." + (show)

@jacklyn
I wish you all the very best and how fortunate are we to have Lori volunteer with her experience to share!
I wanted to update on my journey. My hemoglobin and hemacrit numbers this week were in the NORMAL range for the first time since my AML diagnosis in March 2024!
Through many rounds of Dacogen and Ventclexta I am now down to 1/2 every 28-36 days. No side effects and I feel blessed and grateful for my team…looking forward to seeing my ANC, platelets, WBC and RBC eventually in the normal range. Weekly blood tests do continue as I elected not to have a BMT.

bettersleep68 | @bettersleep68 | Oct 5 11:46am

In reply to @jacklyn "This is so encouraging. I am On venetoclax snd vidaza. I just finished my first 5..." + (show)

@jacklyn . I am on same meds as you..I take 3shots of vidaza per month and vencllecta 100mg daily..I too hope to be in remission soon but have some ugly mutations ..good luck to you

jacklyn | @jacklyn | Oct 4 11:56am

This is so encouraging. I am
On venetoclax snd vidaza. I just finished my first 5 days off the weekend and go back Monday and Tuesday. Then I continue on just the chemo pill and all the medications the put me on. I felt overwhelmed with all the pills I had to take. Did you get any itchiness. I am not sure if it is from the infusions or the new calcium pill they put me on. I hope I will be lucky enough to go into
Remission as well.

Lori, Volunteer Mentor | @loribmt | Oct 3 8:38am

In reply to @justjoan11 "Thank you thank you Lori! Would you possibly consider giving me your private email? If that's..." + (show)

@justjoan11 You can contact me privately by clicking on my picture. It will take you to my page, with the little envelop link under that says, Send Private Message. Those are all private messages and can’t be read by anyone else! It comes directly to me.

I sent you a message the other day, the same way. I’m not sure you’ve seen it. If you’re accessing Connect on your phone, look at the top. There will be a little icon of a person in the upper right corner. Click that and it will open to a menu that shows notifications and messages (along with your profile, settings and the help center). My message should be waiting for you in there.

justjoan11 | @justjoan11 | Oct 2 8:31pm

Thank you thank you Lori! Would you possibly consider giving me your private email? If that's not an appropriate ask, I apologize. I want to ask & share specific things related to my husband's situation & feel uncomfortable posting so much publicly. Thank you Joan

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