Waldenstrom's Macroglobulinemia Community
A second opinion if diagnosed with Waldenstrom's?
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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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A second opinion if diagnosed with Waldenstrom's?

I was 29 years old when diagnosed with Waldenstrom's. The diagnosis was preceeded by a two-year medical investigation as to why my SR was rising. Only two months prior to the diagnosis, my doctor still believed it was some inflammatory disease. The tests on monoclonality came bace with various results; first it showed polyclonality, then they were not sure (I remember my doctor laughing at the exclamations marks following the comment from the lab "very strange!!") and the last test showed positive for monoclonality. A bone marrow biopsy was taken, indicating some form of abnormal distribution. My current condition a year after the diagnosis is that the monoclonal IgM keeps rising slowly (about 30 now), and my red blood cells are dropping in number (about 102). There has been an increase in the rates over the last six months.

I've asked my doctor about whether there is any treatment to cure MW, and she says that a bone marrow transplant can actullay do that, "if done at the right time, and if you know what you're doing". I'm not convinced. All I've read suggest there is NO cure, not even undergoing a transplantation. I don't know, maybe she was trying to cheer me up, but I truly think she meant what she said. Though she has also pointed out how rare the condition is and that she is not fully informed of everything about it.

So. I'm wondering whether I should try to get a second opinion? After all, so many turns were taken prior to the diagnosis, and the treatments need consideration. I wonder, are there grounds for doubting my diagnosis? Can MW be mistaken for something else (myeloma was rueled out in the investigation)?

Please let me know what you think!
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264121_tn?1313033056
I wanted to give you some links to information.  I am by no means an expert on this topic.  My grandmother has Waldenstrom's and I have some hematological issues that are trending in a bit of a dicey manner, so obviously, I have a vested interest in this cancer on her behalf as well as my own.

I would DEFINITELY always get a second opinion when you have questions, or anytime you are dealing with cancer, especially one of this nature.

There is something called cold agglutin disease, or cold agglutin hemolysis, that can look like Waldenstrom's.  Rituximab is also used with it, as with Waldenstrom's.  Here is an article on that:

http://www.haematologica.org/cgi/reprint/91/4/439.pdf

Here is a helpful quote from that article:

"When the criteria for Waldenström’s macroglobulinemia are not fulfilled, <10% lymphoplasmacytic cells in the bone marrow, the current classification system defined at the Second International Workshop on Waldenström’s Macroglobulinemia refers to this as an IgM-related disorder, a classification that includes cryoglobulinemia and peripheral neuropathy associated with monoclonal IgM proteins."

I also found this article to be helpful:

http://www.ajronline.org/cgi/reprint/113/3/499.pdf

I think it is more likely that Waldenstrom's is misdiagnosed initially as leukemia or lymphoma, or multiple myeloma than the other way around, but I would want to be certain in your shoes.  

I think this place may know more about Waldenstrom's than most.  They do a lot of research on it:

http://www.dana-farber.org/

Here is the Waldenstrom's Foundation:

http://www.iwmf.com/

Apparently, MD Anderson also is involved in research and treatment of Waldenstrom's:

http://www.mdanderson.org/Care_Centers/Lymphoma/display.cfm?id=F6B4B6CC-D2CF-11D4-80FF00508B603A14&method=displayFull&pn=A147A463-C48F-11D4-80FB00508B603A14

Ok, about Waldenstrom's and bone marrow transplantation, I can find nothing very recent, but I did find an interesting older article that suggests that particularly in younger patients, stem cell transplantation may actually work.  I would - in your shoes - contact these folks about the follow up on the three patients in this study since the date the study was published and see how they have faired in the longer term.  Here is the link:

http://www.nature.com/bmt/journal/v23/n7/abs/1701633a.html

p.s. sorry it took so long to respond, I'll try to get by here more often.  Feel free to message me anytime.
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264121_tn?1313033056
Here's more on that topic:

http://www.nature.com/bmt/journal/v27/n10/abs/1703041a.html


And the latest I can find on transplantation was published in 2003:

http://patient-research.elsevier.com/patientresearch/displayAbs?key=S0093775403700967&referrer=http%253A%252F%252Fen.wikipedia.org%252Fwiki%252FWaldenstr%2525C3%2525B6m_macroglobulinemia







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