Community Member
a month agoHi There, I was diagnosed with WM in September, 2023, when a shoulder MRI revealed a bone marrow lesion in my humerus. Biopsy of the lesion showed MYD88 L265P. I completed a 4-week course of rituximab, followed by ibrutinib daily for about 2 weeks. I had a severe reaction to the ibrutinib and was hospitalized with acute encephalopathy for 6 days. My disease burden is considered low as a subsequent bone marrow biopsy showed a 5 to 10 percent disease burden. My IgM has always been under 1500. However, I continue to be symptomatic, and my IgM continues to rise slowly. I am not currently in treatment and am in the "watch and wait" mode. Has anyone had next generation sequencing for CXCR4? It is not yet commonly done with original bone marrow biopsy.
Community Member
a month agoMany people in the WM community have found it helpful to discuss next-generation sequencing options, including CXCR4 testing, with their oncology team, especially when treatment decisions are being considered. CXCR4 mutation status can provide valuable information about how certain treatments might work, so it's worth asking your doctor whether this testing would be beneficial in your situation given your current watch-and-wait approach.
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