Waldenström Macroglobulinemia

What does high IGM levels mean after Waldenström's diagnosis?

I will add my IGM at initial diagnosis was over 11,000 and I had multiple issues related to hyper viscosity. IGM still over 2,000 as of a month ago.

What to expect from Venetoclax and pirtobrutinib for Waldenstroms?

I was initially diagnosed with Waldenstroms 4 years ago. I’m now in a protocol with Venetoclax and pirtobrutinib daily. 9 months in my IGM is the lowest it’s been since my diagnosis. I have been fortunate in only having nausea as side effect. I found the anxiety of no treatment was uncomfortable for me.

Should I stop Brukinsa treatment if my new doctor thinks I can wait?

Hi I’m Terrie. I was diagnosed Feb 19 of this year. Started brukinsa in March. My I’m was 945 and I was anemic. Had a. Iron transfusion and Rbc came up. My original hematologist left the practice and now I have a new one. He doesn’t think I need to be on treatment yet. I have a second opinion visit to Dana farber scheduled for May 7. The only side effects I’m having from brukinsa is neck pain and headaches. Prob from the neck pain. Not every day so manageable but if I don’t need to be on treatment yet I’d rather wait.

Has anyone had CXCR4 testing for Waldenström's macroglobulinemia?

Hi 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.

What's the difference between WM and LPL in blood cancers?

Hi Cathy, I just noticed your question. I'm not a doctor, but from what I understand is if you have WM you have LPL but you can have LPL and not have WM! Anyway, I've been fighting WM for 10years. Chemo cocktail stopped working in 2017. I've been on clinicians since them ... I'm on my 4th clinical trial now! Larry

Living with LPL WMG - Am I the only one with this diagnosis?

Am I the only one with LPL WMG? Anyone else living with this diagnosis and treatment?

What is Waldenström's Macroglobulinemia with LPL?

Anyone have Waldenstroms with LPL?