[LilyR]

My mom was diagnosed with MDS over two years ago, but I think she had this disease for many years. She just wouldn't see a doctor. She is 79 and extremely closed about the details of the disease and what she is going through. This is what I know.
-When she was diagnosed her hemoglobin was 6. Her blast count was 7 and only the RBC were effected. I don't know if she was categorized as low-risk or intermediate risk.
-She was immediately put on a study with oral Vidaza. She never was completely transfusion-free on this drug, but she stayed on it for over a year and transfusions were infrequent for a time, but she never achieved remission.
-She was taken off of Vidaza and put on Rivlimid about a year ago. I don't think she is del 5q. This drug caused her WBC and platelets to tank and she was taken off of it.
-She was then put on Estybon some months ago which cause urinary frequency so the dose was reduced.
-She was recently put on Growth factor, and, I think, she is also still on a Estybon, but I'm not positive.
-She has transfusions somewhat regularly, but I don't know if it is once a month or every other week since Dad takes her for these without telling anyone. (He would love to tell us what he knows, but he is in a position where he can't.)
-She has had a number of bladder infections.
-She doesn't seem to have any energy. She has essentially dropped out of life and would prefer that her kids don't come over. She said initially that her doctor said this disease won't shorten her life at all, but I don't know if she still believes that.
My siblings and I would love to bless her and walk this journey with her, but that doesn't seem to be an option. We would like some insight and opinion from others who have experience with the process of this disease as to where we might be at this stage and what to expect from here since she won't let us talk to her doctor?