Hi @Laylaclark6293 I have Myelodysplastic syndrome (MDS) too and was diagnosed at 42 yrs old. It is an awful shock. Its great you have found this board. Myelodysplastic syndrome (MDS) is such a rare disease so its hard to find people in the same position as you but when you do they give you the best support possible xxx
That’s good to know Ashob, wish it wasn’t so rare. Wishing you all the best.
One thing puzzles me about your comment about my stomach ?
Surely you don’t have all your treatments in your abdomen? I’m on a 5day cycle and I’m dosed arm- arm- leg-leg then stomach. That is the usual way it’s administered. The only discomfort I get is when both my legs have been done when they both ache for a couple of days.
Hi @Blackhat no I am dosed in alternate sides of tummy for 5 days. Never heard of it being put anywhere else!
When I was diagnosed in November 2014 I was given a fact sheet about Azacitidine published by Macmillan which lists side effects and the various ways the drug is administered, including the way I have mine given.
I wouldn’t like having the whole cycle in my abdomen.
Rotating the treatment prevents soreness in injection sites.
Check out Myelodysplastic syndrome (MDS) Support Org online who are based at Kings in London, very informative.
Hi Ashob, it’s so difficult to get any answers as there is not much information, I live in constant fear of infections and have no idea how many times
You can have intravenous intibiotics? Xx
Hi @Laylaclark6293 I have had Myelodysplastic syndrome (MDS) for 5 yrs now and never had an infection or needed iv antibiotics (touch wood!). I know not everyone is as lucky but whos to say…
It is a very complex disease. I have been on GCSF injections for the last 4 yrs. They keep my wbc and neutrophils at a decent level to help protect me against infection. Are you on GCSF?
I also have Myelodysplastic syndrome (MDS). Was diagnosed in 2018 and also have GCSF injections twice a week. I’ve been a little less lucky than Ashob as I’ve been hospitalised three times (got sepsis once) and needed IV antibiotics. Overall though tbe GCSF is doing it’s magic and keeping me out of hospital.
All the best, Peter