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← Return to Neuropathy and Waldström
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@ageeth
Hello! Actually I'm Sue (CO64). I've seen comments from Vicki also since we are dealing with similar issues. I looked up different therapies, and what you're being treated with has very positive comments, other than the nausea. Is there something they are giving you for that? I will be treated with Zanubrutinib, which is a BTK inhibitor that's supposed to stop abnormal B-cell development in lymphomas and leukemias. That's my scientific definition. I've been doing a bit more reading about it and I'm hoping the side effects aren't awful. I'm otherwise healthy -- no meds or health issues at age 66. My MGUS was discovered in routine bloodwork, as I understand that's commonly how it is found cuz many people have it and there are no symptoms. It can lead to multiple myeloma (scary) but in my case it's Waldenstroms lymphoma (lymphoplasmacytic lymphoma); they're interchangeable. I also live in Wisconsin (I think Vicki had mentioned she does too), and I also go to UW-Madison for my care . Hi Vicki! Curious as to who she is working with. All the best with your journey. It sounds like it's rough right now for you.
Replies to "@ageeth Hello! Actually I'm Sue (CO64). I've seen comments from Vicki also since we are dealing..."
Hi - just catching up with threads. Glad I did!
I have been on a BTK inhibitor (Calquence - aka another name for Zanubrutinib) for about 9 months. IGm was 1400 and now about 750. I have ideopathic PN.
While the BTK inhibitor is clinically working, my symptoms (numbness) is not dissipating.
My hematologist is adding Rituximab. I go for counseling prior to starting soon. I am hopeful that (in time) the myelin sheath begins to grow back and the symptoms dissipate.
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@co64 Hi Sue! Thanks for reaching out. I am done with treatment, feeling great. Im so glad chemo is done! I am 71, and prior to my LPL and Cryoglobulinemia Type 1, I thought I was pretty healthy. Then my “idiopathic neuropathy” went wild.
I’m glad your bloodwork identified a problem. I was also worried about Multiple Myeloma after my bone marrow. It’s freaky to transition from healthy to having a blood cancer that can’t be cured. But, so thankful for treatment options!
I had follow up bloodwork yesterday. My IgM, had been up to 1200, is now at 270, normal range! My Cryoglobulinemia test gets sent to Rochester Mayo, so have to wait a couple of weeks for that. They both measure the bad antibodies that sludged up the small veins.
Yes, UW! Dr.Brunner. Who do you see? He’s great; at Eastpark Clinic location. I see him today for my first follow up.
Good luck with your medication.