← Return to High Risk Myelodysplastic Syndrome: What to Expect?

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@ray666 While you may have already made your decision, I'll offer my experience in case it helps. I have high risk Myelofibrosis. I am 67 and have turned down a bone marrow transplant. I'm on Ruxolitinib/Jakavi. When my blasts got too high they recommended Azacitidine/Vidaza. I understood that the chemo was not curative but I thought I'd give it a try. It was injections into my abdomen for five days and then three weeks off. Initially they gave me three injections per day and the I convinced them to do two. I stopped after three months/cycles. I was sore at the injection site, the remedy for the soreness was an oil that was messy to prepare, messy to apply, and not very effective. I also had constipation and was wiped out physically. I was feeling rotten during and for one week after. Given that half my time was feeling bad I decided to stop. They say Vidaza is "well accepted" and given to people who either don't want or can't handle more aggressive chemo. I didn't see much change in my blasts but they are so variable that it was difficult to determine whether the drug was having an effect in slowing down the disease. It has now been around 6 months since I stopped and I don't regret the decision either to try it or to stop. The disease and its progression has its challenges but for me the treatment was worse. If you still have to make the decision, I'd try the chemo and see how your wife reacts to it.

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Replies to "@ray666 While you may have already made your decision, I'll offer my experience in case it..."

Hi, @tomatoes

We're going to go with the plan as it has been laid out for us. My partner's first appt. is 1 pm, Monday. I spoke with the infusion scheduler yesterday and was surprised when she told me my partner's Monday appt. will last about an hour. An hour? That surprised. I full expect subsequent appts. to be longer. But all this is new to us. We'll learn once we're underway. Rest assured, however, we'll also learn all we can about treatment options should my partner tire of the results––or lack of results––of the early Vidaza cycles.

My best to you, @tomatoes !
Ray (@ray666)