[Al's Wife]

Sheri,

First off let me start by saying, thank you for your Service to our country. Secondly, I am truly sorry that your Mom is going through this. It is truly a roller coaster ride. But you MUST be an advocate for her. Continue reading and learning as much as you can and PLEASE ask questions. Don't just assume the doctors or nurses know what they are doing, because I could write a book about the mistakes, lack of caring, knowledge, etc. we have encountered on this awful journey.
If I were you, I would ask about the drug Amicar (generic Aminocaproic Acid) for your Mom's low platelets. My husband has had virtually 0 platelets (except when he is transfused about once a month) for the last six months, but the Amicar has kept him from having the nosebleeds and other active bleeding that some encounter. It somehow works to help clot the blood.
As you can see from my signature below, my husband unfortunately has progressed to AML after having MDS since May of 2010. We have been to Houston, Bethesda, Tampa, and Atlanta for treatment, and I actually wrote a letter to one of the doctors at the Cleveland Clinic who had agreed to see my husband before he was diagnosed with AML last August.
In this disease (MDS) there are no two patients alike, even if they have the same type. Just learn as much as you can about MDS through this forum, or by reading (but be careful about googling it, because a lot of the info is outdated and the numbers and statistics could freak you out).
But do enjoy each and every day with your Mom while you are learning. Clinicaltrials.gov lists all the clinical trials that are out there for MDS and the locations.
There are so many knowledgeable people on this forum - some patients; some caregivers - that can offer help and support. So you have definitely come to the right place.
Also don't hesitate to get second and third opinions. We have switched local cancer doctors twice since my husband's diagnosis.
God bless you and I hope your Mom gets better.