Waldenström's Macroglobulinemia

The neuropathy is really getting to me, too. It's not in my face though. Mostly feet, hands, and one arm. Hope it gets better for you, Michaelah.

Hope all went well.

I’ve completed four rounds of Rituxan; One each week for four weeks. The first infusion went well until the very end when I developed Rodders, a shaking sensation. The second one they administered at a slower rate, and I had no problems and the third and fourth was at a much higher rate 90 minutes rather than four hours, and I had no problems there either. Thanks for the follow up. Your interest is appreciated.

I was diagnosed with WM in 2014. I’ve experienced four different treatments and want you all to know there is hope. I may have missed it but, may I ask what puts you “in the high risk category?”

I am sorry to read of your PN symptoms. Being an I.W.M.F, MN/WI support group co-leader, I strongly recommend that you search on the IWMF web site for PN? Also, if you have not already consulted one of the WM specialists, the IWMF can assist you with that. If you have further questions regarding the IWMF, I will be happy to assist you. There are fewer than 1500 WM patients diagnosed in the US and we are all different. Most oncologists/hematologists have few WM patients to draw knowledge from. The worldwide WM specialists not only have multiple patients but have other WM specialists in their clinic to consult with - i.e. Mayo Clinic, Rochester.

Thank you. I do appreciate my oncologist/hematologist and find him very knowledgeable, but it would be helpful to go to Henry Mayo for a second opinion. I just decided that there are a few things I really want to do first. I am enjoying a break from doctor's visits. I am walking and preparing for a few trips. Afterwards, I will call and make an appointment. Appreciate your response!

Enjoy your trip!

Best of luck🙏let us know how it goes.

Yes, my husband, I am looking for a support group. He was diagnosed about six months ago (70) with no other symptoms except fatigue. Blood test were not too worrisome but the recent one showe a spike on one of the results and we have not heard back from the Doctor yet. I am not sure what the next steps will be, the Doctor said no treatment until you have to but that doesn't tell me much or what to expect. He is being treated for HBP and Type 2 Diabetes. High cholestrol also for years but just recently went off the statin because the total number has gotten way too low.

I was diagnosed 2 years ago. Lost 30 lbs, night sweats, etc. Treatment recommended same as you but got second opinion, now take 3 Brukinsa pills daily. My IgG and IgM improved, normal weight. Feel well.