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Grogu

2y ago

Looking for others with Waldenstrom Macroglobulinemia

Aloha, everyone! My sub-type of NHL was identified 10 yrs after the initial diagnosis in 2009, so I went along with the recommended "gold standard" chemo (R-chop) that was the direct cause of my chemo-induced peripheral neuropathy (cipn). Blood transfusions kept me alive long enough for me to ask for the 2nd opinion that revealed my rare sub-type of NHL called "waldenstrom Macroglobulinemia" (wm), requiring the targeted treatment of Bruton's Tyrosine Kinase Inhibitor (BTKi) called "Imbruvica" that brought my HGB back up to normal but with skin-related side effects since 2019... I'm now on the 2nd gen BTKi ("Brukinsa") that has neither resolved the side effects nor restored my energy, so I am now opening to clinical trials before I reach toxic levels of the meds. ANYONE ELSE with WM?

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