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Saturday, March 8, 2014
CLL: Your Opinion Re BMB?
I am a 53-yr. old white female, divorced with two grown girls (one is 27 and lives in Vermont and the other is an "ATCer" in the Marine Corps in SC). I am all alone, no husband, and my extended family is of little help (all older), so I guess I`m just trying to say, "I`m on my own here with this decision-making process, and it`s tough!"
My dermatologist, Dr. Lee Vesper (whose wife is a state legislator and who, apparently, helped establish this site) suggested to me today that I write you. He believes deeply in your service.
I am sorry if I am asking the wrong specialists, but I cannot find "leukemia" in your list of topics and doctors. I have CLL, diagnosed last fall the "first" time in September with a more simple blood test than I later had done up here. When I came here, my doctor said I was supposedly at Stage "0". I don`t know if that Stage is any different now, but I don`t believe myself to be "asymptomatic" anymore. I do get my share of black and blue marks, my doctor recently thought he detected a lump under my arm, I have a constant sinus infection, etc. Now, there was an "irregularity" in the occult test I sent in just last week, and I have to do another. Sorry! I just thought it would help to give you some background.
The first hematologist/oncologist I went to in So. Fla., within weeks of my primary care guy`s decision that I must do so, wanted to immediately schedule a BMB. (I had actually been showing an increased WBC since May of 1999. Of course, I hadn`t had a blood test since April of 1998, so who knows how long I`ve had the CLL?!) Anyway, instead of having the biopsy when suggested in October, I moved back to Cincinnati. I have a fine doctor here who is with a very good practice. He did a "cytometry" test and then gave me the "definitive" diagnosis of CLL, and said I had 5-10 yrs. (I still am not sure (stupidly have yet to ask) whether he meant 5-10 yrs. before showing more severe symptoms, or 5-10 yrs. before "death!" Anyway, he maintains that there is absolutely no need for the BMB, that the blood flow cytometry test is just as meaningful these days a more modern tool. Everything I read (I know "a little bit of knowledge is a dangerous thing"), but also all the leukemia patients I know, say that the BMB is very important. Now, my "Doc" is not arrogant or "God-like" and made it clear he will do the test if I want it. I think he`s just trying to spare me the pain and, apparently, really believes it`s not necessary.
NOW THE QUESTION (finally):
1. Does the test give a better, much more detailed map, description, whatever the word is, of the CLL (what type, how long I`ve had it, how far progressed, whether it was genetic; in short, more specific details) and, will it give me a better idea of prognosis?
2. Do you believe in the importance, benefit and/or usefulness of the BMB test? What is the real reason doctors give it? I am not "big" on pain (and I certainly realize there will be some pain), but wouldn`t let that stop me.
Thanks a lot for listening. Hope I haven`t bored you to tears, but I really need some input. As I said, I realize the final decision is mine.
I`m sorry, but your question does not fall within my expertise as a rheumatologist. It would best be answered by a hematologist and I am afraid that we do not have hematologists participating in our service. As an internist, I can tell you that the flow cytometry examination that you had is certainly adequate to make the diagnosis of CLL. It is possible that a bone marrow biopsy might provide additional information about the subtype of CLL that you have that might be useful for prognosis, but this is an issue that would need to be discussed with your hematologist.
Fred Finkelman, MD
Director, Division of Immunology
College of Medicine
University of Cincinnati