Dear Friends,
I received good news from my second bone marrow biopsy. Although I do have some “dysplastic” cells they are so few that it even says in my Pathology Report from Dana-Farber: “Diagnostic features of involvement by a myelodysplastic syndrome are not seen.” When my doctor called to report the results, he said that even though there are “occasional dysplastic forms,” in the red, white and platelets, and the marrow is “moderately hypocellular” that I am very early in the disease and we just have to “wait and see.” I am so encouraged.
I have to thank those of you, Patty and Neil in particular, who helped me when I was first diagnosed in October. The hemo and his nurse told me that a bone marrow biopsy was “the only cure” and urged me in that direction, because I was young and still quite healthy, therefore a “perfect candidate” for this “cure.” Back then I posted that here and several of you told me to be careful and do a lot of research before considering the BMT. What good advice. I have a much better understanding of the risks and options for me, a person with no symptoms who feels perfectly healthy. Even though my CBC numbers have not been “normal” since August, I have realized that many, many folks with mds have far lower numbers and are doing fine. I have made several changes/additions to my diet which I believe have really made a difference. I have my own version of “juicing” using a bean/tomato/mustard/garlic combination that I think could really be helping. Sorry for the long post. I guess I am just very grateful for this forum. If I had simply followed my first doctor’s advice (and he is an excellent hemo/onco, and well respected) I might be in a much different place right now. There are so many people here with such incredible knowledge and diverse views that in concert you all help many people like me. Again, I am so grateful.
The plan that my doctor has is for me to keep getting cbc’s about every 3-4 months and a bmb once a year. I might skip the bmb, but I might want the cbc’s monthly for a while. My platelets dropped a lot back in Oct and I want to keep an eye on that. I hope I’m one of those whose system easily tolerates low counts. I think I am. I still run daily, although I cut back from 6 miles a day to about two. Sincerely, jclaire
PS they checked my copper and it was normal
PSS A lot of people at my church and my mom’s church, and other friends, were praying for me and I could feel it making a difference, maybe not exactly like a “miracle,” but I felt this sort of strength and positive energy that I attributed to the prayers; it was like a warm blanket across my shoulders.
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