How long can you be on azacitidine/vidaza?

Hi @jalan00 You’re not rambling at all! You’re being very proactive in trying to find information about your dad and his newly diagnosed AML. Seven years ago right now, at 65, I was going through the same cancer journey. Though I didn’t have the option of Vidaza. I had an aggressive form which required intensive chemo and a bone marrow transplant. However, from what other members in Connect have shared, Vidaza has become an important ally in the treatment of AML.

AML can be a challenging form of leukemia but for many it can be held in check with medications such as Vidaza and Venectoclax. You’re right, they are often used together. However, from my understanding in initial treatment it’s not uncommon for doctors to start a patient on one medication to check efficacy. If there needs to be an ‘extra punch’ then there is recourse to incorporate the additional treatment.

If this was your father’s first round of treatment, the follow-up labs will let the doctor know if the medication is having an impact. Vidaza interferes with the growth of cancer cells and can be given as long as it continues to work.
There are different genetic mutations which can cause the development of AML. Some are more problematic than others, making it difficult to keep under control. Do you remember seeing any mention of mutations on your dad’s blood work? Mention of blast counts?

Because Vidaza is a common treatment for MDS and AML, there are quite a few discussions in Connect with members sharing their experiences or asking questions such as yours. This discussion carries the same title as yours:
How long can we be on azacitidine/vidaza?
https://connect.mayoclinic.org/discussion/how-long-can-we-be-on-vidaza/
There are several others in this discussion search: https://connect.mayoclinic.org/search/

How is your father feeling after his first round? Has he had follow-up labs yet?

@loribmt Thanks for responding and for the info. He's doing good after the first round and the blood counts are going down. I don't know about the mutations but the results of his qPCR test was that everything was negative. They found out it was AML during a bmb.
"MARKEDLY HYPERCELLULAR BONE MARROW FOR AGE (80-90%) WITH INTERSTITIAL TO DIFFUSE ATYPICAL MONONUCLEAR CELL PROLIFERATION (78.2%)"

It's because of "indefinite" and "as long as it works" about azacitidine that's been making me anxious. I feel like I'm just waiting for the train to hit but I don't know when 😔

@jalan00 Try not to get wrapped up in the wording used to describe treatments. To be honest, your father will most likely be in some type of treatment for AML indefinitely. It does not go away on its own and the only potential cure for this form of leukemia is a bone marrow transplant.
However, depending on the type of mutation that is behind his leukemia, medications can help hold it in check, some into remission.

Your dad is fortunate to be able to take the lesser intensity treatments such as azacitidine. Comments from members who are on this medication, it seems fairly well tolerated, all things considered. And they can remain on this for years.

The term ‘as long as it works’, well, that’s a bit of a grey area. Again, mutations can be challenging. Some mutations allow cancer cells to circumnavigate the chemo by going dormant or basically hiding from the chemo, only to reemerge some time later when conditions feel favorable. Some mutations keep morphing, adapting to the chemo. When that happens “it’s no longer working” and time for another treatment option.
In my own case, I had 3 mutations which were very aggressive. Azacitidine or venectoclax were not options for me, so I had several rounds of high intensity chemo which is not survivable long term, and then a bone marrow transplant. A good friend of mine, whom I met while mentoring her through her AML journey at my local hospital, had different mutations. She was able to undergo intensive chemo for 5 months and is in remission…has been for 3 years without a transplant. But she was also much younger. As we age, our bodies can’t process the more aggressive chemicals which can cause collateral damage. That’s why meds such as Azacitidine are so valuable. They allow treatment for older patients where aggressive chemo would not be tolerated well. Years ago, these drugs were not available and for older patients AML wasn’t survivable. These drugs are a game changer.

Your father’s doctor will have used your dad’s test results to assess the best treatment for him. He is already responding to this treatment and may be able to remain on it for years before switching to another treatment.

I think you’ll benefit from reading some of the positive stories from other members such as @lindagi who started this discussion a few years ago: AML, age 78, taking Decetabine/ Venetoclax, no transplant https://connect.mayoclinic.org/discussion/aml-age-78-taking-decetabine-venetoclax-no-transplant/

Wishing your dad well through this first month. As his blood numbers drop, he may feel pretty fatigued until the cells regenerate in a couple weeks. His immune system isn’t as strong as it used to be so caution to avoid exposure for illnesses from viral, bacterial or fungal sources. Wearing a mask when he’s in a closed setting with people is really helpful, and no gardening. Is your dad nauseated or feeling tired?

@loribmt Thank you. Right now he's not feeling any fatigue or nausea but there are harned lumps from his injection sites and there are some foods that he finds it hard to swallow.
I'm not sure if its because of the treatment and if it will be like this from now on but I'm looking for ways that could minimize any possible discomfort.

It's still hard for me to see what's happening now because he was the one that was always healthy.