Hi Jennifer,
Lots of questions most of which should be discussed between her and her doc.
The fact she survived a liver transplant raises a question. Has she ever had chemo for her liver problems? If yes, is her MDS considered to be therapy related or secondary MDS?
How old is she?
Which class of MDS does she have?
Does she have any blasts?
Has she had any transfusions?
Is her doc experienced in treating MDS? This is extremely important!! If she is being treated by the same doc that handled her liver situation that doc may need some help from another doc that has MDS experience.
Age is important. Bone Marrow Transplants are becoming fewer and fewer. They are done on younger patients. Stem Cell Transplants are becoming more successful than a full blown BMT. Usually no radiation and less toxic chemo.
Would want to know how many BMTs and/or SCTs the doc has done on MDS patients with her classification and age!!!!!! And what was the 5 year survival rate????
Have any drugs been discussed? Vidaza, Revlimid, Dacogen, Arsenic Trioxide etc?
MDS research has been very good over the last 2 years. There are many advances in drugs and a huge increase in understanding the disease and how to treat it.
Again it is very important to have a doc experienced in treating MDS. If a BMT or SCT is necessary it is imperative that she is treated a a facility that has done many, many of them and they have been successful!! There have been lots of BMTs And SCTs, but how many patients HER AGE survived beyond 5 years.
Can her doc refer her to any other patients that can provide some insight into MDS. There is a huge amount to learn about her particular situation. The more knowledge one can develop on their particular class of MDS, the easier it is to understand and cope. MDS patients are all different. We respond differently to the disease and to treatment. What works for one may or may not work for another. supportive care works quite well for low risk patients. Intermediate and high risk patients are another matter
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