So many questions ...

[tristag]

My grandfather is 66 yo and just diagnosed with MDS 1.5 weeks ago. His type is RCMD. The local hematologist/oncologist did not give any information, but gave him an aranesp shot and told him to come back in three weeks. He has an appointment at MD Anderson next week. My question is, is RCMD Hugh risk or low risk? What we should expect to be told at this appointment. Life expectancy? We have tried the ipss score, but we do not have a lot of information and I believe the score we get is wrong. ANY information would be helpful.

[Neil Cuadra]

tristag,

RCMD (Refractory Cytopenia with Multilineage Dysplasia) is toward the lower risk side of the scale. "Refractory cytopenia" refers to persistent low blood cell counts. "Dysplasia" refers to blood cells with an abnormal size or shape, and "multilineage" means that more than one of the cells lines (red cells, white cells, and platelets) is affected. Your grandfather apparently has a normal blast (immature blood cell) count. A higher blast count would put him in one of the higher risk categories.

Do you already know which of his blood counts are low?

Life expectancy predictions are often incorrect since there are so many variables, so many unknowns, it's so particular to each patient's situation, and survival statistics always reflect past treatment, not today's best practices. However, doctors usually measure treatment success for high-risk MDS patient in months, not years, and patients with low-risk MDS may live for years but not decades. As with all averages, many patients beat the averages while others do not.

You'll get better answers from the experts at MD Anderson than you or I could get from guessing. The doctors will presumably perform a bone marrow biopsy and aspiration, study the results, confirm the diagnosis, review your grandfather's complete medical history, and discuss the treatment choices.

Asking questions and learning about this rare disease is the first step toward helping your grandfather. The Bone Marrow HandBook from the MDS Foundation and the free MDS materials from the Aplastic Anemia & MDS International Foundation provide many details about myelodysplastic syndromes. You're of course welcome to look through these forums too.

[bebop]

when my Dad was diagnosed he was low risk but within the time frame to get all results he went into high risk. so 2 weeks a huge difference. I think it could depend on how long one really had it prior to diagnosis. Get a copy of all blood work and track the numbers.