← Return to AML, age 78, taking Decetabine/ Venetoclax, no transplant

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

Blood Cancers & Disorders | Last Active: May 29 10:27am | Replies (48)
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@dmc1937

I am 86 and had remission for 15 months with Inqovi but no longer. I have been offered ara-c with Venetoclax but not sure the side effects are worth it. What has been your experience?

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Replies to "I am 86 and had remission for 15 months with Inqovi but no longer. I have..."
Lori, Volunteer Mentor | @loribmt | Feb 24 1:27pm

Welcome to Connect, @dmc1937 AML can be a difficult to treat, especially when we’re older because of the harshness of some of the treatments to get us into remission. This form of leukemia often comes with acquired mutations which can present even more of a challenge to keeping us in remission. Some of cells can hide or go dormant during treatment, only to reemerge later. From my understanding, some cells can even become resistant to a treatment that has been working well, necessitating a new treatment plan.

From information I’ve read, low-dose Ara-C (Cytarabine) and Venetoclax used together, is a treatment considered for refractory AML, meaning it has returned after remission and is often fairly well tolerated in older patients.
(Posted one of the links below)

https://ashpublications.org/blood/article/140/Supplement%201/1453/491643/A-Prospective-Phase-2-Study-of-Venetoclax-and-Low

As with any type of chemo, the side effects can cause fatigue weakness or nausea, especially as blood numbers drop mid-cycle until they regenerate again. @lindagi was on a similar cycle for several years and has been in remission for 16 months. She’s shared her story throughout this discussion that she started a few months ago. Another member who has been in treatment for refractory AML is @timt347. He may be able to offer you some insight on your treatment plan.

I wish I could tell you what the side effects will be like for you. There is always a risk of not feeling well with these treatments but to do nothing, well…eventually the AML is going to win. Once it gets foothold again it can progress rather rapidly. What does your hematologist oncologist say about your blood work. Are they finding blasts (immature white blood cells) in your blood results?

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timt347 | @timt347 | Feb 24 5:41pm

I was on ara-c and venetoclax also. The side effects were hardly noticeable. I had a small decrease in energy levels, which means that I would lie down to rest a little more, and it periodically lowered my blood counts, requiring a pause in the medication every 6 weeks or so. That was all. I had no problems with it. I am 63.

If you have an interest in biology, the way these two drugs work together is amazing. It took my breath away when I learned how they work. I know only a little biology, but these drugs are based on an understanding of how things work at the molecular level. They are not the old-style chemo drugs. They work in a totally different way.

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