Azactidine

[PhilC]

I would be interested to hear from anyone who has been treated with Azactidine. I have MDS RAEB with excessive blast cells, my initial bone marrow aspiration showed a level of 10% but after homeopathic treatment this dropped to 3% but my CD117 levels were 15% and the consultant has suggested I might need treatment soon.

I thought the level of blast cells was a key indicator of disease progression ? Any comment?

Does anyone know the significance of a raised CD117 level?

Currently on watch and wait after diagnosis of MDS in August last year, suffered skin itching which has since gone, my only real symptoms of being unwell are coldness in the morning but after an hour wearing two jumpers this goes and reduced energy levels.

Interested to hear others experience before and after Azactidine either on it's own or in combination with other new treatments.

I would also like to hear from anyone with MDS in the South East that would like to keep in touch

[Mazcd Partner MPNVoice]

hello PhilC, MDS (myelodysplastic syndrome) is not the same as MPD/Ns (myeloproliferative disorders/neoplasms), so I am afraid that we can't give you any advice. There is a MDS UK Patient Support Group which does have a forum you can join where you can be in touch with other people with MDS, the website address is mdspatientsupport.org.uk/. Best wishes, Maz.