AML, age 78, taking Decetabine/ Venetoclax, no transplant

Posted by lindagi @lindagi, Jun 30, 2023

I am a 78 yrs old with AML and opted not to have a bone marrow transplant due to my age. I have been in remission for 16 months thanks to regular cycles of Decetabine (infused, brand name Dacagen) and Venetoclax (orally, brand name Venclexta ). Anyone else on the same regime? Would love to hear your experiences and share mine.

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fortuitous | @fortuitous | Mar 12 9:46pm

Hello.I'm also on the same drug regime with the decitabine and the venetoclax.The first infused for five days the second in pill form for 14 days. On a six week turnaround.My aml is in remission I guess.Besides a couple of outbreaks of thrush I'm feeling good.My oncologist says my hemoglobin has rallied. I'm also not going for a transplant.I've got this genetic mutation ddx41 that's supposed to be an advantage.I surely hope that is the case...

5qdeletion | @5qdeletion | Mar 14 7:40pm

What good fortune to be in remission! Hope it does the trick for a good long time.

Can you tell me whether you've had strong side effects from Venetoclax and Decitabine --- and if you started Venetoclax for the very first drug? I read somewhere that those drugs are used after remission, when more help is needed.

My 82 year old husband was recently diagnosed with AML. We talk next week with the hematologist to determine how to proceed. Your input would be most appreciated!

lindagi | @lindagi | Mar 15 8:48am

Hi,
I have posted earlier about my situation (now age 79, started Venetoclax and Decitabine 2 years ago at Mayo Jacksonville, still in remission). To answer your question, I did start with this drug combo. The main side effect (beyond fatigue that is manageable with naps!) has been low neutrophil counts between treatment cycles. That means I am sometimes immunocompromised, limiting the time I can go to indoor, people-intensive places. To manage that side effect (which I believe is fairly common), my doctors have gradually reduced the number of days I take Venetoclax (originally 21 days, now 7) and the length of time between cycles (originally 4 weeks, now 5 weeks which means that about 3 weeks out of 5 I am immunocompromised.)

I hope you are able to ask alot of questions of your hematologist. It takes awhile to wrap your head and heart about the nature of AML and treatment options. I wish both of you good luck on this journey.
Linda

5qdeletion | @5qdeletion | Mar 28 8:59pm

In reply to @lindagi "Hi, I have posted earlier about my situation (now age 79, started Venetoclax and Decitabine 2..." + (show)

Lindagi, I just read this today 3/28, and it's great information for my husband who was recently diagnosed with AML. His WBC is 1.8 and ANC is 1.03. Mayo hematologist in Jacksonville says he's in for a "rough year" - he also has MDS 5q deletion. A bad combination. Thanks for posting good detail about your experience, that does help!

Lori, Volunteer Mentor | @loribmt | Apr 24 10:51am

In reply to @5qdeletion "Lindagi, I just read this today 3/28, and it's great information for my husband who was..." + (show)

Good morning, @5qdeletion I just wanted to check in on your husband to see how he’s doing. Has he been able to start treatment for his AML?

links | @links | Apr 28 6:54am

Good morning..has anyone taken this treatment for mds..that would be hopeful for me
Thank you

Lori, Volunteer Mentor | @loribmt | May 28 11:55am

In reply to @5qdeletion "What good fortune to be in remission! Hope it does the trick for a good long..." + (show)

Hello @5qdeletion, It’s been quite a while since you’ve posted in Connect. I just wanted to followup with you to see how your husband is doing. He was recently diagnosed with AML and he was about to have his meeting with the hematologist. I hope by now he’s having some good news and responding to treatments. Is he currently having chemo or taking meds to control the progression of the disease?

sonieaml | @sonieaml | May 29 10:27am

Hi, I am on the same regiment of Dacogen (IV) 5 days in a row which started 5/20/24 concurrent with Venetaclax (14 days) concurrent with Dacogen then continuing the remaining 9 days.
My side effects have been joint pain and intermittent nausea.
Like you I will not have a BMT. I have had two bone biopsies the second one showed I was in remission! Currently my Oncologist has me repeating this regiment every 4-5 weeks; all based on my bi-weekly blood tests.
Hope this post is helpful to you.
BTW my bloodwork in mid-February was fine. End of March I got pneumonia and ER bloodwork found I had AML!

marylou329 | @marylou329 | Jul 2 6:48am

I have MDS and have been put on the same Chemo with Venetoclax. I have had 3 Cycles of dicatibine and 14 days of Venetoclax. They are preparing me for a Stem Cell Transplant. I have another Bone Marrow Bx next Tuesday to see if blast are down.

Lori, Volunteer Mentor | @loribmt | Jul 2 8:31am

In reply to @marylou329 "I have MDS and have been put on the same Chemo with Venetoclax. I have had..." + (show)

Hi @marylou329. Wishing you only good news with your upcoming BMBX next week! A goofy joke between my transplant team and me was “ Yep, life’s a blast until you find them in your blood.” I said goofy, not funny! Gallows humor and all…
Joking aside, I hope you’ve had success in lowering the blast count. The cleaner you go into transplant the more favorable the outcome.
Will you please let me know what you find out with your results?

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