I get the Acor list emailed to me at another email address now. Someone there was very worried about her B2 Mcg test. I read the responses, and the one from the person I consider the most knowledgeable patient of that group, was not right, at least from my perspective. The tests that he posted about CRP, LDH, serum freelite, and others, do not work for me at all. My CRP and LDH are always completely normal. My serum freelite is always 20,000 time the normal limit, even when I was in remission according to every other test. And finally, the Beta-2 Microglobulin is only really useful as a diagnostic test IF it shows a trend upwards or downwards for many months. A flu or the cold can cause a jump in the values of the test. And if this is a 2 month flu, it is a problem.
Also, some oncologists think it can be used as a prognostic indicator at any time. This is incorrect. It can ONLY be used as a prognostic indicator at the time of diagnosis, and for some people, like me, it is not even that useful for that. It it were, I should be dead, since my numbers was over 6.0 at diagnosis. And I have had a reading greater than 13 past then. Also, another patient told me her B2m was always high, even while in remission. So, for every patient, one has to find the tests that work as a group, and watch the trends for many months. What works for one mm patient will probably not work for another.
Alex Maas
a.maas@cox.net
San Diego
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I think, Alex, you are right about the importance of B2M. My dr. uses it only along with my anemia trend, as measured by Hemocrit numbers as well as my IgA trend. This, along with my reports of how I feel.
I also wanted to give more specific information about the latest reports on bisphosphonate related osteonecrosis of the jaw (BRONJ). This information is available at the IMF website (myeloma.org) under a position paper by the American Association Of Oral and Maxillofacial Surgery. In it, they suggest three stages. Stage I. Some necrosis but no evidence of infection. Stage 2. Necrosis with infection. Stage 3. Necrosis with many other complications (my paraphrase.) They give their recommendations about stopping the bisphosphonates. In my case, I had some infection, so I guess I was at stage 2. The surgeon did a minimal amount of removal of dead bone, I am taking a vacation from Aredia, and we'll hope that it all will clear up. So far so good....not perfect, but it seems to be improving, halleluya.
Alex-
Are these two tests the same? Similar? What are the differences if any?
As a non-secretor I have believed for years that the only diagnostic tool available to me is the Freelight Chain test. Does anyone know if this is true?
David
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