Twilees mom,
Many of us here remember the shock of an MDS diagnosis. We said "M-D-what?" and then started to read about the disease. We soon learned that this is a dangerous disease but that there are treatments available and people who know what to do. I wish I could tell you that there's a magic pill that instantly cures MDS, but unfortunately there isn't. Still, you'll find many MDS patients who have successfully battled the disease and are doing OK. My wife is one of them, diagnosed 15 years ago.
Having MDS is frightening, but there are many people who are willing to help, from the amazing folks at the
Aplastic Anemia & MDS International Foundation (AA&MDSIF) to the doctors and researchers who work with this disease every day to your fellow patients at sites like this one and at regional and local conferences. Together we're your instant support team.
You'll want to know more about MDS and your particular diagnosis (MDS/RAEB). Two of the best sources are the
free information packet you can get from the AA&MDSIF (order it right now), and the
Patient Handbook that you can download from the MDS Foundation. It takes a while to learn the medical jargon, but it helps to know some of the basic terms and phrases (CBCs, blasts, IPSS score, etc.) so you can be a partner to your doctor. You can't learn all the medical jargon instantly, but we all learn as we go.
You can also learn about MDS from the AA&MDSIF
Online Learning Center, which offers MDS tutorials and webinars, live or pre-recorded.
Let your family know what's happened and get them onboard too. They should read or watch some of this material so they can provide you with the best emotional support as well as practical assistance. The AA&MDSIF offers a list of
medical questions you can ask and you can post any questions that you think of for the other patients in these forums. When you go to medical appointments, try to take along a friend or family member who can take notes and who can make sure that you get your questions answered. It's best to go to appointments with a written list, and to remember that the doctor works for you and shouldn't leave until your questions have been answered in terms you understand.
If you want to talk to another patient or caregiver on the phone, check out the AA&MDSIF
Peer Support Network.
There are research studies in progress all the time to that help identify the best options for patients. A doctor with MDS expertise will know how to weigh the tradeoffs among treatment options. Your local GP or even a hematologist at the closest hospital, on the other hand, may have little or no experience with MDS. You really ought to be under the care of a doctor who knows MDS well. Will that be tough to do in Fresno? Would you be able to get across to Stanford University, up to UCSF, or south to the Los Angeles area, at least for a consultation?