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@co64
Hi Vicky! I am curious how you are doing. I googled BTK therapy but haven’t heard about it.
The therapy they give me is rituximab (chemo) and bendamustine ( immune) and I have had 2 treatments sofar and both times I ve been quite sick, sick as feeling vomiting, pain in my whole body, and sweating.
It’s hard!
Right now it seems that my NP pain in my feet is a little bit less or not getting worse. And that is the reason that I started this treatments.
But on the other hand I realise that it will be a very rocky road. Hope it’s all worth it!
All the best Vicki and keep in touch 🙏
Replies to "@co64 Hi Vicky! I am curious how you are doing. I googled BTK therapy but haven’t..."
@ageeth Hi! It is hard going through treatments. My treatment was the same as yours! I found my nausea meds were less helpful with each treatment. One nurse suggested I chart the time I took an each pill, to stay ahead of the nausea. It helped until the third treatment. My dr added a third medication, called Olanzipan. I don’t think I spelled it right, but it helped so much.
The good news is it’s behind me now, and will be soon for you. Are you getting 6 treatments? I have had my first follow up bloodwork and Dr visit. My IgM dropped from 1200 to 250!! My Cryoglobulinemia test was negative. I still have some feet numbness; my toes are sensitive but not numb. My fingers are not numb. So, excellent news. In remission! Next follow up will be in 3 months!
My energy is returning. (I still like to go to sleep at 8.) I hope you have a good outcome. I’ve been thinking about you!
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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.