Hi Brenda,
I was very interested in your comments about your husband’s response to your MDS. Unfortunately I got pretty much the same response from my husband (who I since divorced and remarried) and my four “best friends” who just didn’t get it either. Most people don’t even know what MDS is, but everybody knows what Leukemia is!!! I had a great GP who figured out why I was so tired all the time, did extensive bloodwork, and referred me to a good hematologist who recommended that I watch and wait and get my bloodwork done every four months. In the beginning I wanted to know everything about MDS, and I was compliant about getting my bloodwork done. However, after a few years of no symptoms except for some fatigue, I got sloppy about my bloodwork. I still went, but sometimes I stretched it out to six or seven months. I just didn’t want to know!!! It was always in the back of my mind, but I really went into denial for quite a few years. So now I have AML, a slightly more compassionate husband, my daughter, and new real friends - not just fair weather ones. I still have the same GP and a new much better hematologist. Watch and wait is a good strategy in the beginning because treatment too early can cause more harm than good, but it is very important to keep all your bloodwork appointments. It is also important to know which kind of MDS you have because only about 30% transform into AML, and you don’t want to belong to that club!!! Also, it’s really important to know what, if any, cytogenetic abnormalities and DNA mutations you have. I know it’s hard, but just try to take it one day at a time.
Anne-Marie