MDS

Hi everyone

How good it is to have our own blood cancer group, yay! Anyone who has myelodysplasia will first of all know how difficult it is to remember its name and then how to pronounce it. They will also know that depending on which part of the blood is affected, ie red cells, white cells or platelets-or even a combination of cells-that there is another name to remember! 

Myelodysplasia is a very rare cancer and gets even more rare when you find out which cell group that you're in. In my case, only my red cells are low-though lately my white cells have taken a hit and I'm finding that I'm neutropenic also more often than not.

So, given that I have too few red cells, I have Refractory Anemia. Whilst I have heard occasionally of someone with MDS I have yet to find anyone with refractory anaemia! I have treatment every week which is an injection of a substance called EPO (short for darbepoetin alfa) which stimulates my bone marrow to produce more red blood cells. This medication is in the form of an injection which I have been self injecting for a number of years. I was diagnosed with MDS in March 2015 and the injections began 3 or 4 months later so in total so far, I have self injected over 300 times. It's fair to say that I am still here because of a good haematologist who diagosed my MDS in the first place.

I wrote an account of my MDS in Volume 1 of something in our community. Possibly Steph, Tom, Megan or someone might help here to say where it is? 

Take care and stay safe everyone

Tvman x