How long can we be on azacitidine (Vidaza)?

He does exercise as much as he can handle right now. He knows the importance of exercise but right now he can be breathless at times if he does too much. Just walking around the house and doing little errands give him about 2 miles of walking per day according to his apple watch.
Yes, having a higher level of hemoglobin helps a lot as we can observe.
For the longest time his levels were along the upper 10.8 , 10.9 ranges . His hematologist / oncologist told us about any level in triple digits is good for his age.
Last cycle it shot up to 11.3 and I tried to recall what I fed him. Mainly I have added NZ mussels , lots of watermelons (since it is so hot in Texas) , plus meaty meals . I have read peanut butter is good for platelets, so he has been eating p/n butter stirred into his yogurt every morning.
Like he says, every little bit helps.
As I read your web site ...I have been praying for all of you at the same time.
MDS is not too well known, and we need more research funding for future treatments .

Thank you for inquiring about our case update. We have gone through 10 weeks of Iron infusions with 5 weeks of B-12 shots. All went well with that. Red cell count up a bit. Unfortunately, white cells remained the same, low. We found an excellent hematologist, who is working with us. We see her next week to discuss Vidaza. So, we are very interested in whatever information we can get from this site. About the Vidaza, it seems once you're on it, it continues for a long time. That does not make sense to us. We will be asking if the Iron transfusion can be continued as needed. Do you have any information about this procedure? We need lots more info on Vidaza. Are there any other drugs that might bring up levels? So far, we have no blasts. Thank you for all your help.

I am 82 y.o. and just finished week 10 of Vidaza therapy. Neutrophils fluctuating around 1.2 to 1.4. Unable to walk more than 50 feet at a time, then breathing becomes very difficult unless I sit for at least 5 minutes. Have not spoken with doctor for several weeks ! I need more input but difficult to obtain. Have no goals to look forward too!

Hi @sitinin403 Goodness, not being able to walk more than 50 feet without getting winded is miserable! If your Neutrophils are low after your treatment it may be also that your other blood numbers have dropped too. If your hemoglobin is low that can account for your lack of oxygen in the blood, which makes moving and breathing difficult.
Do you know what your hemoglobin or hematocrit results were from your last labs?

If this were me I’d call my hematologist office to set up an appointment or consider a trip to urgent care…just to make sure everything is ok! Are you getting weekly labs run but not having a consult with your doctor or NP?

It’s important to have a list of questions for your hematologist next week regarding Vidaza, the Vit B shots and iron infusions. She’ll explain the purpose of the Vidaza and the expectations. You may not require it yet but if you do you’ll have the answers you need to make an informed decision. ☺️

But to help you make sense of why this may be a long term medication, MDS isn’t a once and done diagnosis. There are different stages to the disease. But basically, there have been changes in the bone marrow, which is the heart of the blood manufacturing site in the body. It’s no longer able to make enough healthy blood cells.
With genetic changes taking place in some of the cells, those cells elude the body’s natural ability to fight off the cancer cells. Unless these rogue, defective cells are destroyed, they continue to proliferate and flourish, eventually pushing out healthy blood cells.
Vidaza’s goal is to help your bone marrow make healthy blood cells by destroying, or killing, blood cells that are not normal. Again, this isn’t a once and done. Some people are on Vidaza or a combination of meds life long, long term or with breaks, depending on the response to treatment.

A little refresher on MDS https://www.mayoclinic.org/diseases-conditions/myelodysplastic-syndrome/symptoms-causes/syc-20366977

Here’s another Vidaza discussion on Vidaza in Connect:
~I’m about to begin treatments with Vidaza. What should I know?
https://connect.mayoclinic.org/discussion/im-about-to-begin-treatments-with-vidaza-what-should-i-know/
(More can be found by typing in Vidaza in the search bar on top).

No sign of blasts in the peripheral blood tests is good! Has there been a bone marrow biopsy recently?
Will me know what you find out at your appointment, please!

Weekly labs being done. Hgb remaining around 9.9 and Hct around 30. Not seeing MD for ? reasons. Still get Vidaza every other week.

Okay sometimes a little humor is okay. Your husband and maybe some readers are old enough to remember Bill Crosby’s humor before TV and before his problems torpedoed him. Long ago in the early 60s (1963 in his debut album “Bill Cosby Is A Very Funny Fellow” he recorded his comedy routine about Noah talking to God and expressing incredulity at what God was asking him to do (build a large boat and load up 2 of all God’s creatures on it), At one point, Noah (Cosby) expresses frustration to God, to which God responds with a question “How long can you tread water?” (About minute 6 in this YouTube voice recording reprise from a later album (?) https://youtu.be/CgsFCyD4nEw?si=sDM6Bhc0_EeMBnTr

So that’s essentially my answer today. I have coached several patients who took this cocktail as long as it worked. Then I have coached a few through their hospice experience. The length of time varies according to mutations, tolerance, fitness and how quickly the cancer cells can figure out how to avoid the cocktail. It can be years and years. I have one patient now who is fracking up month after month happily. It can be a shorter time. Keep on going, Time is a precious commodity for all of us who battle this sneaky disease.

All the best to you and your husband.

@timt347 I realize your post is over two years old, but did you ever get a response to your question?