|
Being actively involved in treatment options is normally appreciated on some level by the doctor. With a disease like MDS, I wouldn't be afraid to ask and suggest and understand why. Many doctors only see only a few MDS cases per year and just are not specialists in the disease, so when they see a case, their understanding and treatment options may not be fully up to date. That is why many of the members on the forum have received 2nd and even 3rd opinions not only on diagnosis, but on treatment options - this is especially relevant because MDS is not one disease but a bunch of similar diseases, meaning that many patients respond differently to proposed treatments. There is a whole lot of art with the science.
__________________
MDS RCMD w/grade 2-3 fibrosis. Allo-MUD Feb 26, 2014. Relapsed August 2014. Free and clear of MDS since November 2014 after treatment with Vidaza and Rituxan. Experiencing autoimmune attack on CNS thought to be GVHD, some gut, skin and ocular cGVHD. Neuropathy over 80% of body.
|