Hi jules. Sorry for your recent mds diagnosis.
I’m a big supporter of standardizing treatments for rare diseases like mds. I became aware of an organization that promotes that at National Comprehensive Care Network . My second opin. doctor is on the board. They publish a standardized treatment protocol for mds at NCCN Clinical Practice Guidelines in Oncology for Myelodysplastic Syndromes . Although this doc is meant for physicians, it is still an interesting read. The bottom line is that I think you want a doctor who follows a treatment protocol that is well supported by the hemo/onc community. The first thing your doc needs to do is determine the severity of your mds. Your bone marrow biopsy report has the data to derive your level. The severity level should fall into low, intermediate 1, intermediate 2, or high. Using this info, your mds subtype and age, the doctor can follow a workflow as specified in the standard treatment. If your doctor has scheduled only 6 month visits my guess is that you have ‘low’ severity.
Looking at the future, at 46 years old, you are young enough for the only cure currently recognized by western medicine: a stem cell transplant. However, the toss-of-a-coin outcome of that lengthy procedure will have you wondering if you would not be better off sticking with supportive care until the disease progresses. However, the disease can quickly transform to leukemia between 10-30% of the time, depending upon your severity level. So waiting is also a risk. The rock… or the hard spot… you choose. No doctor can tell you ‘how fast’ mds will progress if you are in the low to intermediate 1 categories. I, for one, attribute my steady blood counts over the past year to taking food supplements (see my signature line). I imagine that our marrow stem cells are like an assembly line for making red, white, platelet and more stem cells. When the assembly line finds itself short of raw materials in the form of minerals, enzymes, etc… production has to slow down. With mds, the stem cell ‘babies’ (blasts) never evolve into adult red, white, platelet or stem cells; as though some key materials are missing to complete the growth process. Although supplements will not reverse or cure mds, in my case, I am sure that they slowed down the progress. Eventually the faulty line of marrow stem cells will take over.
Hope this helps.
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