← Return to Neuropathy and Waldström

Discussion
ageeth avatar

Neuropathy and Waldström

Neuropathy | Last Active: 16 hours ago | Replies (25)

Comment receiving replies
Profile picture for co64 @co64

@vicmar
I wish you well in your road to recovery! Makes me feel optimistic. I have been taking magnesium glycinate (oral) for years because I know it's good for sleep, bones, etc. I also have used magnesium oils/creams in the meantime which didn't help a lot, but that was before I was dx'd with LPL/Waldenstroms, which made me thnk my neuropathy was a symptom of that. Is your lotion a prescription or something OTC? My doctor initially didn't think the cramping was a symptom and not till recently did he agree it could be a symptom for some people. I had my blood tested for hyperviscosity because I felt it was a circulatory issue. My number came up a bit high but apparently not serious enough for concern. Sounds like your numbness was much more serious than mine -- scary. I do get up many times in the night to try to get rid of cramps, which I've become desperate for it to stop. I'm curious as to what chemo you were treated with? I will be started on BTK therapy, an oral pill which is supposed to target the cancer cells with fewer side effects. It often is used in combination with traditional chemotherapy, but we are planning to start with just the BTK on its own. At this point I don't even know which combo of pills or if it's a singular pill. I will find out soon which course is best for me. Best of luck with your follow-up appointment!

Jump to this post


Replies to "@vicmar I wish you well in your road to recovery! Makes me feel optimistic. I have..."

@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 🙏