Neuropathy and Waldström

My situation is not exactly the same, but maybe analogous. I have Essential Thrombocyyhemia, my bone marrow makes too many platelets. It can lead to Waldenstroms in some cases if not treated. I have a neuropathy that involves numb extremities. I have started cytoreduction treatment with hydroxy urea. It took about 6 - 7 months, but my neuropathy is now much better. My platelets are also in a normal range. So treatment to improve your blood counts might help alleviate your Waldenstroms.

Yes! I was diagnosed first with neuropathy. A year later my symptoms had changed and worsened. My fingers were numb, extremely sensitive to cold. My toes were the same only worse. The third and fourth toes on each foot turned blue, purple, and some tissue blackened. All toes were inflamed; I couldn’t wear shoes last December and January. (In Wisconsin) I could only carefully warm my toes with a heating pad.
Multiple tests, months of searching and consultations later, I saw an Oncologist who initially diagnosed Cryoglobulinemia Type 1. Following a bone marrow test, Lymphoplasmacytic Lymphoma was found; Waldenstrom’s was given as another diagnostic term.
I started chemo in July; Rituximab and Bendimustine. I have one treatment left. My IGM numbers have dropped from 1500 to 400. No numbness in my left hand, barely any on right. No pain with cold with fingers and toes; no color changes. I still have some numbness in balls of feet, toes are sensitive, which we take as a good sign!
I have been living a Covid type lifestyle, as my immune system is knocked down. I have not caught anything. We include in my “bubble” my grandchildren and their parents when they are healthy!
I hope my IGM numbers dip to 290; which would be within normal range. It’s hard when you can’t be “cured” but I am optimistic. Hoping for a lengthy remission. I’m 71; another round of chemo could be in my future; which of course no one wants, but I know it worked!
I hope the best for you. Shoot me questions and keep me updated!
I am grateful for my doctors at UW Madison. We are lucky to live 20 minutes away.

@eloise999 thank you very much for your response! I will take this with me and my decision.

@vicmar , this is very helpful. It sounds very much like my situation. May I ask you of the chemo had side effects during this therapy? And with the Covid type lifestyle do you mean that you sort of isolated yourself? Apart from seeing your family?
Thank you so much for taking the time to write to me. I am a Dutch woman, living on Mallorca.

My chemo side effects were primarily varying degrees of nausea. Treatments were four weeks apart, six total on Wednesday and Thursday. Nausea kicked in Saturday, also extreme tiredness. Generally Ifelt better by Tuesday. So far, just one tough recovery that included throwing up. The dr adjusted my nausea meds; the next recovery was better! My energy level and appetite were much better by Friday.
Yes, I mostly limited my interactions with immediate, healthy family, and a couple of close friends. My husband and I fit in a restaurant visit once in a while; eating outside mostly. It’s too cold now! You will figure out what works for you. You live in a beautiful part of the world! Being positive is so important. Give yourself lots of self care and be kind to yourself! Best wishes. Keep in touch.

@vicmar
Thank you for sharing your experiences with me. It really is a help for me and especially to hear how you deal with this. And you’re very lucky to have your husband next to you!
Staying positive is not easy but I do my best and enjoy the beautiful surroundings here. And my amazing dogs.
Wish you all the best!!! And yes let’s keep in touch.
Ageeth🖐️

It’s difficult to maintain optimism when the condition is incurable. Even being days away from my last treatment, it’s hard not to dwell on the “unfairness”. I try to hang on to the “it could be worse” attitude and find some joy every day. Happy Holidays. Vicki

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I have Waldstroms and neuropathy in my one foot. Do you think there is a link? Have you found a solution yet?