Neuropathy and Waldström

@vicmar hi Vicky, the good thing is that you are almost done! For me the most difficult thing , that get me down again and again is my Neuropathy Pain! In my feet. That’s for me the main reason that I started the whole Therapy. So I hope that my pain will reduce!
I feel quite sick on day 5 now, and little energy.
Have a good weekend🖐️

Yes, Ageeth, I also have numbness in both feet, which is very concerning. I had been monitored the last couple years for MGUS but now have been recently diagnosed with Waldenstrom's lymphoma. However, the numbness along with excruciating foot/leg cramps at night have been ongoing for quite some time. I will begin some form of treatment in January. Not sure what to expect.

@co64
Thanks for your reply.
I started with chemo immunotherapy 2 months ago. I find it very hard but hopefully the pain, numbness and coldness will get less.
What is MGUS?

@ageeth Hello Ageeth. I’ve been wondering how you are doing. Chemo is hard! Christmas time would have been chemo dates; felt amazing that I was done! I’m getting my energy back and escaped exposure to Influenza A. The coldness in my feet and hands is gone. I have some nerve damage in the balls of my feet. My dr explained that this will take longer to go away, and that some could remain. It doesn’t keep me from being active, or awake at night so I could live with it! I have follow-up next week, with bloodwork the week after. I’ll reach out to you to see how you are doing and hopefully be able to share continued good results!
Thinking of you!

@co64
Decades ago my mother’s neuropathy was deemed to be caused by Waldenstom’s, which destroys the myelin of the nerves. I believe that she had one treatment of a chemo drug but had a reaction. Her limb neuropathy progressed, her gait and balance worsened, and she developed dementia. While she was in a nursing home, I read about a doctor who was doing research to see if the dementia was another effect of the disease, but we could not participate due to my mom’s extremely poor health. I’ve since learned that there can be a familial connection - my sibling was diagnosed with Waldenstom’s last year.

@ageeth
MGUS is an acronym for monoclonal gammopathy of unknown significance, often a precursor to different blood cancers. It goes untreated and is just monitored through labs until patients develop varying symptoms. I had a bone marrow biopsy which solidified my diagnosis from MGUS to Waldenstroms. I'm getting nervous as to future treatment and side effects.

@ffr
I'm sorry to hear about your mom's situation. My neuropathy just involves numbness in my feet, along with terrible cramping. No pain from pins/needles sensation. Hence, sleep is a huge issue due to pain from cramps at night. Interestingly, neuropathy can be a side effect of chemo, so since I already have neuropathy, I can only hope treatment helps reverse that problem. Other than that and having joint aches, along with high IgM in my blood, occasional night sweats, I had no other symptoms. Until the bone marrow biopsy.

I have had leg & foot cramps for much of my life and even get them in my hands on occasion. A number of years ago I read that dehydration and sugar can be culprits, so I try to drink more water and eat less sugar. It has helped. Btw, my sibling, currently being monitored for Waldenström’s, does not have neuropathy, unlike our mom.
We are all different.
(I had chemo a few years ago and have had only minor neuropathy symptoms.)
Best wishes with treatment!

@co64 I recently finished chemo for LPL. I haven’t had cramps, but high IgM, numbness in feet and hands, and toes that had turned blue, purple with some blackness; prior to diagnosis and treatment. I recently started using magnesium lotion on my feet and toes before bed. It has helped with my new sensitive toes. My sleep has improved as well! I’ve read the lotion has helped with cramps; might be worth a try? Good luck to you! I also have Cryoglobulinemia Type 1; my numbers are dropping!! Have my first follow-up and blood work this week and next.

@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!