[Annettec]

My mother was diagnosed in May 2014 after going for her annual blood work due to having had cancer 25 yrs ago. She was and is still not feeling any effects from her aggressive form of MDS. At the time of diagnosis, her oncologist told us that unless she started treatments right away, her MDS would likely turn into AML very quickly. Her blasts were 13% at the time of her diagnosis. ( she was told that there was a slight improvement when they conducted another BMB in Nov 2014). She has just completed her 10th Vidaza treatment and except for a week spent in hospital in January from a fever, she has really tolerated her treatments well and continues to enjoy life....albeit, she sometimes gets fed up with the time she has to spend at hospital for treatments, tests, doc appointments, etc.

Vidaza has definitely helped her. Her blood counts have all gone up and except for one transfusion in the 1st month of diagnosis, she has been transfusion free. Since her fever in January, her last blood work did show a slight decrease. I am hoping it's related to her fever (infection) but down deep, I am concerned that Vidaza is starting to be less effective.

I have read just about everything I can get my hands on regarding MDS , AML and Vidaza. It's obvious that older people do not have the same prognosis as they are not candidates for a BMT or aggressive chemo. Here's my question, does anyone out there in this vast MDS community know of anyone in their 70s who has lived more than 3 years on Vidaza? I should mention that her oncologist does not appear to be very optimistic... At least that's what we are sensing...he's not the easiest of communicators and since my mother prefers to know less, we cannot get much out of him while she is with us. I have her POA and although she would like me to be her advocate, her doctor will not meet or speak to me alone. His receptionist told me that he told us everything he can tell us. Very frustrating when we have questions that I am sure would shed some light, but he simply will not give us any time. I often wonder how doctors would feel in our positions? A bit goes a long way.... We often just need a professional opinion to make sense of all the info we are taking in.

I love my mother dearly.... And I am trying to anticipate her needs so that we can support her as much as possible. She is such a good person, she deserves that and more.....

All the best to everyone dealing with this horrible disease.....
Annette