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Waldenstrom's Macroglobulinemia Community

This patient support community is for discussions relating to Waldenstrom's Macroglobulinemia, non-Hodgkin lymphoma, monoclonal gammopathy of unknown significance (MGUS), multiple myeloma, and plasmapheresis.
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Monoclonal immunoglobulin

by hanaguchi, Feb 01, 2008 07:44PM
Has it been determined if waldenstrom's Macroglobulinemia is genetic? Is there a genetic test for it.
Member Comments (5)

by alagirl, Feb 04, 2008 08:44PM
My understanding is that although its a very rare cancer, it has run in families, and due to that, its thought to be  heritable cancer.

by alagirl, Feb 10, 2008 03:07PM
To: hanaguchi
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.

I'll try to find a link to that for you.

by Chillydip, Feb 11, 2008 07:47PM
To: hanaguchi
I suggest you take a look at www.iwmf.com There is some work being done in that area.

by Dennis MD, Feb 20, 2008 06:46PM
To: hanaguchi
Hi.
It has been noted that waldenstrom's macroglobulinemia has a familial occurrence.  There are cases when it was found in siblings and in monozygotic twins.

by alagirl, Jun 07, 2008 10:24PM
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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