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

Getting ready to take him to his third infusion this week. I just wanted to say I appreciate the conversation.
I just lost my Mom a couple of years ago. She was young and it was a long almost 10 years of being a caregiver. Now just a couple of years later we receive this news with my father and it was so unexpected. He has always been healthy and very fit. Not too long ago he competed in bodybuilding contests. Being a care giver is exhausting but I wouldn’t trade it for the world. It’s an honor to be able to care for your parents.
You are so very kind and supportive. I really appreciate you and will continue to pray for you.

Good morning, IamHisDaughter. I have been following your conversation thread and wanted to send my support. I am a 10 1/2 year survivor of AML. I was 59 at diagnosis and was blessed to achieve remission after conditioning chemo and stem cell transplant from my sister.
Your most recent note about caring for your Dad resonated with me. I was a caregiver for my two parents over 9 years until my Dad passed away at age 93 and my Mom died at age 96. There were days when I was so tired and occasionally frustrated with the challenges of dealing with our elder care facility. I always knew the time would come when I would be free to come and go freely through my life. Now that time has come, and I would give anything to have just one more hour with them. You are exactly correct, it is an honor and privilege to be able to care for our parents. I miss mine every day. God bless your journey with your Dad. You honor your Mom as you care for him.

Hello kt2013: I too cared for my father until he passed away. I miss him. I have a question about your sister donor. What percentage of a match was she for you. My sister is a 50% match. I am thinking about a transplant but have not committed. I will decide after my next bone marrow biopsy.

Hello. Thanks for your note. I was blessed, my sister was 6/6 match with me. Best wishes on your journey.

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?

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)

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?

Thanks for the response, all very interesting. My oncologist seemed very neutral when she offered this chemo and I've initially decided against it. However, as I've been able to find more information from support groups, I'm tempted to try it. I know I have much against me but I am still living an active life and a great deal of family support. I'm amazed that I was never told about this Mayo Clinic support group, just stumbled across it. It would have been very helpful during my journey the last 18 months.

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.

Thanks for the information, my oncologist really said nothing except offering it. This site is the first I've seen that has patients with AML, other sites weren't relevant to me. What I'd read initially really turned me off but I'm really ready to give it a try.

I am starting ara-c with Venclexta Monday. Treatment requires shot of ara-c twice a day with 1 Venclexta tablet daily. The shot has to be at Mayo so I will be driving 100 mile round trip twice a day for 10 days. Whether I continue after that will depend on side effects. I have the NMP1 mutation.