How long can we be on azacitidine (Vidaza)?

Hi @justmeb5 Recently, in another discussion you’d asked about Vidaza (Azacitidine) and if there were other medications besides that product to help with the symptoms of MDS. I wanted to make sure you saw my reply:
https://connect.mayoclinic.org/comment/1283544/
From my understanding, patients can be administered Vidaza cycles for many years as long as the medication remains effective. Vidaza interferes with the growth of cancer cells, which are eventually destroyed. However, blood cancers and conditions such as MDS, may progress over time requiring modifications in treatments. If at some point Vidaza (or other meds) no longer control the proliferation of the defective cells, or the bone marrow can no longer produce enough healthy blood products, then blood and or platelet infusions become necessary.

Pros of being on Vidaza would be to help keep the cancerous cells under control. It’s designed to help the bone marrow produce more healthy and normal functioning cells. It can 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 MDS from transforming to acute leukemia. It’s not a cure but it is a means to help control the condition.

Cons of watching CBC counts and undergoing blood transfusions without having treatments is that the MDS may escalate faster necessitating frequent blood and platelet transfusions for life. This can start slowly with red blood transfusions every few months to several weekly. The same with platelets. Patients can become transfusion dependent.

There are members in the forum who have been on Vidaza for quite some time. They’ve learned to roll with the cycles. Resting for the down week and then making the best of the good weeks by playing golf, enjoying their lives, family time, hobbies, etc.
As for quality of life, I guess we all may have those decisions to make at some point…when the balance of joy has shifted and we weigh the options of treatment vs ‘let me go in peace’.

I know you’re new to the MDS diagnosis. Have you begun treatment yet? What stage is your MDS?

Lori,
Thank you for your input. As many have said on the site, you are amazing. The first hematologist we saw did not explain the stages of MDS and other things you mentioned. We are waiting for an appointment with a second hematologist. Thanks to this site, we have many questions and hopefully get answers.

Hi @justmeb5, I really do feel it’s my privilege to be able to help out anyone enduring blood cancer treatments or a bone marrow transplant. When going through my own AML/BMT odyssey 6 years go my husband and I had no idea what lay ahead. Fortunately I had great medical teams, both locally and at Mayo-Rochester who were very forthcoming with information and support.
But my greatest mental boost was being able to speak with people who actually experienced what I was going through at the time. They gave me hope! I realized how important it can be to have a mentor, someone who has walked the walk and understands from a patient’s perspective.
It can make all the difference in the world to speak with someone who truly understands the range of emotions a patient is feeling with a frightening diagnosis.

That’s what makes Connect such a special forum! Most everyone here, or a loved one, has gone through some medical drama. They’ve reached out for support, encouragement or hope and stayed to pay it forward! We are all lifelines for each other. So I’m really happy that you have joined Connect and finding it to be a safe haven.

As a patient you have every right to know exactly what’s going on with your health. I think you’re wise to seek a 2nd opinion with a new hematologist. If for nothing else, confirmation of the diagnosis and potential treatment options. Let me know if I can help in any way, ok?

I have MDS and have been on Vidaza for 3 years, (36 cycles) 5 days every 5 weeks. My Hemoglobin labs have remained in the normal ranges. It has not gone down. I am 76 years old.

I haver asked my doctor also about how long can I be on Vidaza. Never got an answer. I'll find out and get back to you. I got the impression for life.

All the best, good health.
Mike

Good health to you, brother..I have been on Vidaza for 40 cycles ..so over three years now…all my labs are in normal ranges …hemoglobin around 13…

I am 76…been on Vidaza for 40 cycles…Hemoglobin has been around 13. Good health to you my friend. ..stay positive …

Are you in remission

My husband will be on his 15th cycle on Vidaza . He is 82.5 years old . He was told of MDS after 2 bone marrow biopsies 1 year apart .
At first they put him on Reblozyl (to raise his hemoglobin levels) but it failed to work after about 6 months . Then they put him on Vidaza . 5 days of shots and 3 weeks of rest per cycle .
So far so good .
His hemoglobin went from 5.8 to 11.3 .
He had 3 transfusions at the start of his MDS journey and no more transfusions needed after those .
I just want to encourage everybody that Vidaza works for him and I make sure he gets a good protein diet everyday .
Plus drinking plenty of water helps .
May God bless all of you . Keep up your faith !

Hi @justmeb5. It’s been a while since we’ve chatted so I thought I’d check in with you today to see how your appointment went with the 2nd opinion back in May. I know you were newly diagnosed with MDS and your current doctor wasn’t very forthcoming with information. It can be reassuring to at least know what to anticipate! I hope you were able to get answers to your questions and some firm guidance for treatment.
How are you feeling? Have you begun treatment for MDS?

Welcome to Connect, @vng. It’s wonderful that your husband is doing so well on Vidaza for MDS, especially with the news he hasn’t required any transfusions since he’s been in treatment! I’m sure with his hemoglobin level back up past 11 he has some pep to his step again! Fatigue with lower numbers is debilitating!
Thank you for sharing this positive experience with the group. You may never know who needed to see this today for a boost of encouragement! ☺️

Thanks also for the tips on diet and keeping hydrated. Those are definitely keys to staying healthy. Do you and your husband get out walking or exercising daily as well?