How long can we be on azacitidine (Vidaza)?

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?

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 .

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?

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?

Lori, I’m amazed at your dedication in helping answer question and concerns. You have messaged me a couple of times concerning my husband. I am so concerned about his chemo coming up March the 18th. What our concerns are his platelet counts being always low. He has had 8 platelet infusions in the last month and half. They will be treating him with Vidaza 7 days then off for month. I pray it doesn’t take them to low. They go below 20 about every 3 days then the infusions. Has not had to have any red or white infusions. Has any one else had low platelets and had Vidaza chemo. Praying for all.

Lori, I’m amazed at your dedication in helping answer question and concerns. You have messaged me a couple of times concerning my husband. I am so concerned about his chemo coming up March the 18th. What our concerns are his platelet counts being always low. He has had 8 platelet infusions in the last month and half. They will be treating him with Vidaza 7 days then off for month. I pray it doesn’t take them to low. They go below 20 about every 3 days then the infusions. Has not had to have any red or white infusions. Has any one else had low platelets and had Vidaza chemo. Praying for all.

Good morning, @dax1million. I’ve said this before to other members, that it’s a privilege to be able to help answer questions and concerns, where I can, with blood cancer or stem cell/bone marrow transplantation. I’m happy to be able to offer lifelines to anyone going through these uncertain times. I’m basically paying it forward for the outstanding care I received and all the information and experiences I gleaned along the way. ☺️

I know you’re very concerned about the upcoming chemo for your husband because of his low platelets going into this treatment. The end goal would be to get the cancer under control so that his body can resume making healthy blood cells and he no longer would need them.

I recently read an article on Vidaza. (link below) But the first paragraph talks about the applications for this drug: “… myelodysplastic syndromes: refractory anemia or refractory anemia with ringed sideroblasts (if accompanied by neutropenia or thrombocytopenia or requiring transfusions.”
https://news.cancerconnect.com/treatment-care/frequently-asked-questions-about-vidaza-azacitadine#:~:text=Vidaza%20belongs%20to%20a%20group%20of%20drugs%20called,such%20as%20cancer%20cells%2C%20ultimately%20causing%20cellular%20death.
I can’t highlight the passage but your husband has thrombocytopenia…having below normal platelets. This drug is approved to accommodate patients who already are dealing with low platelets. Doesn’t mean they won’t go lower for a while yet but it looks as though this is minimized with Vidaza.
When you read further down on the page, under the “less common side effects” it lists lower platelets as a lesser side effect.

He will most likely need platelet infusions for a while yet until the treatment starts working. So don’t lose hope that this will turn things around! It doesn’t work over night. If they go low, he’ll have more platelets. I can’t tell you how many transfusion of red blood/platelets I had over the course of treatments. It’s what we do in the interim until the meds kick in and do their job.
You’re both going to get through this!! To do nothing is to, well, do nothing! This is a step in the right direction. ☺️