I have MDS RAEB2 and after diagnosis in 2014 have been treated with Azacitidine successfully since then.

last week was my 80 th monthly cycle.

I don’t think you will be able to get it anywhere, you could approach the manufacturers Celege you will find their details online.

good luck and best wishes

Honestly? Have you really been on the treatment for 6 1/2 years?

I have CMML2 and it’s very rare with no actual support groups. It not really part of MDS now.  So I don’t know anyone who has been on Azacitidine ....

My father was diagnosed with MDS and was advised (by 6 different doctors) that a bone marrow transplant was the best option. It took about 6 months from diagnosis and being put on the transplant list to finding a donor match (on the world donor list) and being admitted into hospital. 

So far everything has gone according to plan. It can be a terrifying decision to make but in hindsight was absolutely the right call.

If you are young, drugs to treat MDS might make sense in the first instance given the risk involved with a bone marrow transplant. For older people however it seems best that they proceed with a transplant as soon as possible to give the best chance of success!