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@justmeb5

So, is it possible, depending on what they find with platelet, etc, a person could be on Vidaza for as long as they live? Can someone explain how that provides quality of life? What are the pros and cons of Vidaza compared to watching CBC counts and undergoing blood transfusions?

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Replies to "So, is it possible, depending on what they find with platelet, etc, a person could be..."

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?