[bailie]

Bossywife, I can understand both sides of your conversations with your husband. I have always been a "feel good guy" and sometimes in denial which is not unusual. I always thought the way I was feeling was mostly due to getting older. I was healthy my entire life and very active. My reality check was a routine CBC which showed that my platelets dropped to 48 (even though I was feeling fine). I was on a fast track through MDS to AML(which can happen in weeks). Luckily my doctors were very proactive and I started treatments within a week. I had no knowledge about MDS. I did have a good friend who was diagnosed with AML two months prior to me. He had put off getting medical help until it was too late. Since my diagnosis I have become a strong believer in being on the offensive with MDS and AML. It is so important to begin treatments and "stay ahead of the game". MDS and AML don't get better on their own. They are relentless disorders. Entering into treatment at optimum health is extremely important. If waiting too long some treatments such as Vidaza (a primary treatment for RAEB-2) can be very difficult. If started while in otherwise ok health the treatments are successful about 50% of the time. The next step would be the transplant which also should be done in the best health possible. Your husband is fortunate to be in otherwise healthy condition (besides the leg problems).

From your observations, your husband needs to adjust his thinking (I completely understand that it might be difficult), look at the big picture, face reality and challenge this disease just like he is attacking a goal. It is that important.

You asked, "What causes MDS to transform to AML?" The only real difference can be the blast count going above 20 percent. This can easily happen in weeks or a few months. Once that happens it becomes a much steeper climb. It is important to go into transplant with as low of blast count as possible and that is how the Vidaza treatment helps. I would definitely not wait until February to get the next check. For me, I had blood tests every two weeks following diagnosis and bone marrow biopsies every three months (or sooner).

The "specialist" is not doing your husband any favor by suggesting, "the specialist and my husband decided that "if he's feeling fine, why bother", plus there is a 20% chance he could die from the transplant". Doesn't sound like the kind of specialist I would be drawn to.