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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
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.
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It's good to know I'm not alone in this IgM MGUS journey. I have so many questions. My impression is my Oncologist/Hematologist is just using the HMO playbook. Fortunately, she is willing to play along with my requests for tests like LDH & MRI. My IgG levels are low, Free light chains seem normal. I don't know if my IgM is Kappa or Lambda and I don't know if it makes a difference anyway.
The first time we talked, she seemed to promote a BMB, but I declined at the time mainly because at that time I was still hoping this whole situation would progress very slowly. Unfortunately, my IgM levels have been rising exponentially. In a few months, I'll get all the testing done again including the BMB and then put the results into the Dana Farber calculator and know which Risk Group I'm in.
Depending how those tests go, I may then ask for FISH (MYD88 L265P), maybe Flow Cytometry to identify clonal markers (CD19, CD20, CD5, CD10, CD38, CD138, etc.) on abnormal B-cells/plasma cells.
I don't think she will be happy about doing more tests. The MRI I talked her into, didn't find any lesions but did find an unrelated AVN condition affecting my hips and that resulted being assigned to an orthopedic surgeon. Who knows what these tests will find.
I'll let you know how my testing goes. Let me know if you have any questions and how your journey progresses.