[donna j.]

Dear PeppersMommy,

Has your father been assessed by a Transplant Doctor? Many hemotologists that have been in practice for a while, have little knowledge and no experience regarding transplants. I have read that persons up to the age of early 80's have now received transplants.( I don't know their conditions or the outcomes.) Prior to my transplant, I received 3 rounds of Vidaza, which knocked me to the ground. I upped my CBC checks to 3x a week, and my transfusions for PRBC and Platelets were increased to every 7-14 days, with counts falling lower than before. (6.9 for Hemo and below 5 for platelets). My immune system also dropped, and I had strong reaction to the Vidaza: vomiting, confusion, loss of appetite, and pneumonia.
It was not explained to me that this was possible during the treatment. I felt it was not helping and leaving me less healthy. My transplant dr. said she had hoped to have 4 rounds prior to the transplant,
My BMB did not show any improvements after the Vidaza.

Has your father's biopsies shown any improvement since his Vidaza regime?

Unfortunately, these are very complicated diseases with new information available ongoing . Drs. do not seem to feel obligated to update themselves or to inform and educate us along the way. Thank heaven for sites like this.

Although I am at fault myself, a recommendation I frequently see, is to also see a dr who specializes in MDS.

I hope you and your parents seek and get further assistance regarding your father's health, it just sounds very "old school" to me.

Donna