[MDSPerth]

Teo,
My partner Paul was diagnosed with MDS in July 2012 and so far his only treatment has been the growth hormones EPO and G-CSF. When diagnosed, he was low in all three - ie red, white and platelets. The injections have been really successful in raising his neutrophil counts from very low (.35) to into the normal range (increased to 4.35 - they then reduced dosage and now fluctuate around 2.70) and his haemoglobin has increased from 94 to 105. Even his platelets have shown an increase from 24 to 40 and this is unexplainable.

In Pauls case, he is not producing sufficient cells, but most of what he is producing are reasonably healthy (ie minor dysplastic features) and he has low blast cells. In this instance hypometholathing drugs like vidaza are not suitable because they would kill off the healthy cells that he is producing.

Because MDS is so variable, perhaps your mothers story could be something along these lines and this could be why they are not recommending some of the options that are available. It took a lot for us to start to understand why some people seemed to have access to what seemed like the latest treatment for MDS and Paul was not getting the same benefit.

Until the cytogenetic test results were returned, the original BMB results favoured AA, however when the cytogentic tests returned chromosome abnormalities which are consistent with MDS.

MDS seems to be such an insidious and variable disease that even the 'experts in the field' are constantly learning and trialing new methods of treatment.

Hang on in there Teo.