Azacitidine (Vidaza)

Hi , sorry to hear your dad has relapsed.

While you are waiting for some of the group members to pick up on your post, you could put Azacitidine (link to info page) into the search tool above and have a look through the hits and if you want to post a question at any time hit 'reply'.

Hi sam

I was diagnosed 3/04/2020

and started chemo next day. treatment is for 4 days  first week of the month and 3 days second week. balance of the month is recovery. treatment is azacytidine needles (2) on each day in my stomach. They hurt a bit, sometimes a lot.

Side effects are extreme tiredness gets better towards end of month. Nausea or vomiting but if you take anti nausea pill an hour before treatment usually fixes the problem. Chemo saps your energy a lot. I also have Parkinsons for which I exercised a lot including 86 5km Parkruns. I can no longer run and can only walk 1-2 km a day. After 4 cycles of treatment my platelet count has gone from 10 to 129, (200+ is the bottom of normal) which is good. As a result my energy level has improved as well, so it appears to be working.

I am hoping after 6 months or so remission may be possible. It is so important to stay positive. I did a mindfulness course which has helped a lot

I hope all goes well for you but it requires a lot of patience.

Ccheers

Rob Tasmania   Aus