Hi, Courtney.
Welcome to Marrowforums. As you read through the threads in the
MDS forum, you'll get some feeling for the experiences people have with MDS. A good thing to do when you're getting started learning about MDS is to contact the
Aplastic Anemia & MDS International Foundation to request their information packet on MDS. The Basic Explanations booklet in that packet covers all the basic terms and gives a good overview of what MDS is about and how it can be treated.
When I was diagnosed with MDS in 1998 it was following treatment for what had earlier been diagnosed as aplastic anemia. At that time there were no drug options for MDS, so I had a bone marrow transplant. Though it wasn't much fun, I survived and have been fortunate to have few long-term side effects.
People's experience with MDS varies widely. You're right that MDS/RA is the "mildest" form or the form with the lowest risk of transforming to leukemia. It's possible to live for quite a long time with little or no treatment if your counts are stable and, with drug treatments available today, more serious forms of MDS can be treated effectively.
The results of your bone marrow biopsy give the best indication of the status of your disease. Do you know if the test showed chromosome abnormalities? If so, do you know which ones?
Feel free to post your questions here or in the MDS forum and we'll all do our best to help you learn.
Regards,
Ruth Cuadra