How long can we be on azacitidine (Vidaza)?

Hello @dchavian, welcome to Connect. I invite you to look at the following discussion in addition to your discussion, https://connect.mayoclinic.org/discussion/mds/. @jaylevel1 talks about being on vidaza as well and a few other members talk about MDS. As far as the length of which you can be on vidaza, unfortunately, such a specific question would be best answered by your medical provider. Is that a question you have asked your provider? You mentioned you don't have many symptoms currently, which is great. Other than your question in regards to how long you can be on Vidaza, do you have any other questions or concerns you'd like to ask members on Connect?

Thank you Justin , yes I have asked my Doctor and he says I,m doing fine and there is not other choice ,but stay in the treatment, my questions was oriented to see about other patients with the same situation , it will get worse now I,m on Vidaza for 2 years? how far from other complications am I , according to there patients situation? anyway I will check in all the other discussions you mentioned ,
thanks again , is so good to be on this site .

@dchavian, I would like to invite @shammer to this discussion as well as they also recently joined and talked about being prescribed vidaza and may be able to share their experience as well.

Our doctor said he has had patients do well on Vidaza for many years.

my wife has been diagnosed with mds and has two rounds of Vidazia. What is the average wait time for Vidazia to show any effects on her hemoglobin?

Welcome to Connect, @camacho. I’m sure with your wife’s recent diagnosis of MDS (myelodyplastic syndrome) you have a lot of questions running through your head.

MDS is a condition that affects the production of blood cells in the bone marrow. It can progress into a more serious condition where the bone marrow starts producing too many immature white blood cells called blasts. That’s when it’s time for chemotherapy, as in your wife’s case.

She’s been given Vidaza (azacitidine) which is a type of chemotherapy that turns on certain genes that help kill cancer cells. As a result, cancer cells no longer grow out of control. It can take several cycles to get the condition under control.
You’re asking about the average time to show an effect on your wife’s hemoglobin. There’s more to the blood results than just the change in your wife’s red blood count. Her doctor will also want to see a drop in white blood cells as well. All of her counts will fluctuate with the cycles of chemo…they’ll all drop 7-10 days after the end of her cycle and rebuild by the beginning of the next.

Have there been any changes to her blood numbers? What are you hoping to see with her hemoglobin? How’s she feeling with the chemo?

I am also taking Vidaza (along with Venetoclax), but for a different reason. In my case it is to treat an AML relapse.

I don't have any information to share about how long one can take Vidaza, but I would welcome information about how to extend the time that I can take these two drugs.

I have had MDS for 31/2 years. On vidaza for the same time. Leukemia cells in bone marrow blood levels 0. 3 months now blood levels are awesome. Kidneys levels low. I feel the only problems I have seems to be from the chemo and premeds. My dr makes it sound like be on this for life. What say you?

Hi @njjwjj Welcome to Connect. It’s very encouraging to hear that the Vidaza (Azacitidine) treatment you’re receiving for MDS is keeping your blood numbers in the ‘awesome’ range! For any of us with a blood cancer, those are the words we like to see! From my understanding Vidaza is a medication you’ll be on for an extended period unless it stops working for you or if there are side effects where your doctor feels another medication would be more helpful.
I did find a good article from Chemoexperts.com about Azacitidine. https://www.chemoexperts.com/azacitidine-vidaza.html

Here is an excerpt:
“Azacitidine is designed to help the bone marrow produce more healthy and normal functioning cells.
Goals of therapy:
Azacitidine is given to help increase blood cell counts, reduce the risk of infection, reduce the amount of blood transfusions needed, decrease the risk of bleeding, and to prevent MyeloDysplastic Syndrome (MDS) from transforming to acute leukemia. Azacitidine is not commonly given with the goal of cure.
Azacitidine is repeated every 28 days. This is known as one cycle. Treatment is continued until azacitidine is no longer working or it is stopped because of unacceptable side effects”

There are also several conversations in the blood cancer and disorders support group with other members who have MDS. It’s nice to meet people and chat with people who have similar health conditions. You may want to pop into this discussion:
Living with MDS:
https://connect.mayoclinic.org/discussion/living-with-mds/
@momz @nbadry @rrivory @lorieafoote @ jps01 @snakebite and several other members

Other members (or have loved ones) who are also in treatment with Bidaza are @timt347 @camacho. They may be able to talk a little more with you about the duration of treatment.

Does your doctor feel your low kidney function is related to the Bidaza?

I am on my 28th cycle. 7 days per month every 28 days.
All the best to you.