I think there may be some folks who are studying family systems where Waldenstrom's has been seen to run. One of the things I believe they saw was that Waldenstrom's seems to be striking subsequent generations of family members at a younger age.
My grandmother has Waldenstrom's and probably has had it for some time before it was diagnosed. She is in her late 80's and doing quite well actually after chemotherapy.
I have a normocytic anemia of unknown disease and was diagnosed with osteopenia in my twenties. I am 41 and I now have osteoporosis. I am procrit dependent for the past four or five years. I suspect possible tubule damage due to preeclampsia twenty years ago but don't have much basis for my suspicion since I've never had a kidney biopsy.
There was one kind of strange cell in the last bone marrow biopsy I had done regarding my anemia four years ago, but the report said it was of unknown significance, that it was probably artifact. I suppose my not so secret fear is that later I will develop Waldenstrom's. I tried to do another bone marrow a few months ago but at the time, I was on interferon (I was assaulted last year and got acute hepc. I was able to treat acutely and I am now SVR) and the doctor said the interferon interfered with the biopsy causing it to be invalid. I have been off of interferon now for about three months and I need to schedule another biopsy I suppose.
It would be nice if they could study the early medical records of Waldenstrom's patients in order to correlate which issues are most strongly associated with developing the disease later. I suppose I would like to see a lot more research on family systems as well.
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