[For_Emma]

Hello - I am very new to the MDS Forum this is my first post so my apologies if I do or say something incorrect. Feel free to correct me. First I want to thank all who take the time to read and respond to this post. My name is Cynthia my mother Emma who I am representing on this Forum page is 78 and recently diagnosed with what we believe to be High Risk MDS. Her Doctors are of varying opinion. When we started this about 5 months ago they put her on Procrit however there were no changes other than her counts went down. Then they tried Revlimid again without any positive changes in the counts. As a matter of fact over the past 5 months being on one then the other drug her counts dropped more than what they were prior to taking either of the drugs. The one Doctor is of the mindset that he can try keeping her on transfusions to see if this will bring up counts. About 3 weeks ago she had 3 bags of blood and 1 platelets and as of today (3 weeks later) her counts are (WBC 2.6, Platelets 27, Hemoglobin 6.6 and RBC 2.10). The one Doctor would like to put her on Vidaza but I am of the mindset that if we can bring her counts up via transfusions with medications to remove the excess iron and immunosuppressant’s to control the antigens then why should we jump to the Vidaza. This evening we received a call from one of her Doctors who would like her to be tested for Paroxysmal Noctumal Hemoglobinuria (PNH) of which I read could turn into Aplastic Anemia. In either case they all seem to fall into a similar “blood disorder” type concern. Anyway I guess I am just asking readers what they think? Thanks blessings to you all and thanks for helping me kick-of this amazing opportunity for knowledge share.