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← Return to Waldenstrom macroglobulinemia (WM) 3 years: Might I be in remission?
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Waldenstrom macroglobulinemia (WM) 3 years: Might I be in remission?
Blood Cancers & Disorders | Last Active: Aug 21 4:01pm | Replies (52)Comment receiving replies
I'm on a Wait and Watch with IgM MGUS. My IgM are about half of yours. For my next biannual testing, My Oncologist/Hematologist has agreed to get the data to run this risk calculator......
https://awmrisk.com/
Because of the people involved in making the calculator, she thinks it is accurate. She has always assumed the risk categories were not standardized to a specific set of values. I'm thinking she might be wrong and this may be the standard is for IgM MGUS.
Replies to "I'm on a Wait and Watch with IgM MGUS. My IgM are about half of yours...."
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It's so frustrating to not have specific information especially on the Wait and Watch MGUS.
I was the same until diagnosed with WM after all the labs, testing, bone marrow biopsies, and genetic testing for MYD88. I am fortunate that I don't have any symptoms and so I am considered Smoldering WM...again Wait and Watch (which I am totally okay with!! ).
My Oncologist also uses the Dana Farber risk calculator and I'm curious if others have had the same, and did it align to when you started having symptoms and treatment?
I know everyone is unique and this is just a tool and am curious to your responses? Not looking for a "doomsday" clock, just more interested in the analytic responses. Every day is a gift! Thanks.