Neuropathy and Waldström

@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!

@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 🙏

@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.

@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.

@vicmar
Hi Vicki! I'm glad I came across this site. I've been told LPL/Waldenstroms is fairly uncommon, so it's good to get feedback from other people. Sounds like you have rounded the curve, so to speak. So happy for you! Yes, it is freaky to go from living a healthy lifestyle and then find out something incurable is lurking in your body. But I'm hopeful. I have very high IgM (over 3500), which I think accounts for the crazy neuropathy and cramping I get. If I can get over that, I'd be forever grateful. I've been seeing Dr. Gahvari at UW. He's been super great, very comfortable to work with. The medical jargon I've been reading can be very difficult to understand. I hope your follow-up was promising. All the best!

@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 🙏

@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.

@co64

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.

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.