[Ruth Cuadra]

Hi, June.

Welcome to Marrowforums. You're not alone in the fear and confusion you're feeling about your dad's MDS diagnosis. There are many people here who have had the same experience.

Your concern that your dad's MDS might evolve to acute leukemia is reasonable but may be premature. MDS is divided into several categories, only some of which are likely to lead to leukemia. The diagnosis of MDS--and the identification of which subtype your dad has--can only be confirmed through a bone marrow biopsy. Had he had one? What were the results? In particular, you'll want to know if any chromosomal abnormalities were found and, if so, which ones. This information will help identify his subtype and possible prognosis.

It sounds like he has gotten good treatment so far. I'm impressed that the doctor is aware of Vidaza and Revlimid, both of which are important and recent additions to the options for treating MDS. I don't know how it works at Kaiser, but you should be aware that these drugs are very expensive and many times patients have a hard time covering the costs. You should clarify this with Kaiser before your dad starts his treatment.

I understand your family's first reaction to keep the information about MDS from your father to help him keep a positive outlook. Although I was much younger than your dad when I was diagnosed with MDS, I wanted to know everything. Having information about the disease, the treatments, and the possible outcomes helped me feel in control of the decisions about my care. There are certainly people who don't want to know the details, but I think they need to at least know what they are dealing with.

In terms of life expectancy, you should know that MDS affects everyone differently, but the statistics that you will find on the Internet do not really correspond to the experiences of our members. Many people, even when diagnosed in their 60s and 70s, have a good life for years and years.

Lastly, I am also in Los Angeles, so if you'd like to chat by phone or by personal email, please send me a private message.

Regards,
Ruth Cuadra