Waldenström's Macroglobulinemia

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’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.

Hope all went well.

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.

So sorry to hear about your dad. I, too, am in the high risk group. There are many types of treatments, and there is a group IWMF online that tells you about treatments, how others were diagnosed, etc. It was very helpful to me, because high risk is a bit frightening. I learned that many others have the same diagnosis. It was really helpful for me to see how people keep on living, and living well. My treatment was Rituxan and dexamethasone once a week for four weeks, and then I am checked often. I am starting to tire again and am becoming a bit breathless so it may be time for more treatment. Many people use a combination. It helped me to keep remembering the word, "treatable." It's not curable, but it is treatable. I wish you and your dad the very best.

My daughter was first diagnosed with MGUS and now WM. Had several chemo treatments, which seems to hold her numbers with no changes. Which means no spreading. She is now off chemo and there is possible talk of her starting the Rituximub infusions at a center close to home.
Wishing you all the best. Please keep posting your effects on this infusion. 🙏

Good luck with your infusian. Mine start a week after yours. Stay in touch.

I was diagnosed in 2022 with WM w/ IgM neuropathy. 12 Rituxan infusions latter neuropathy not better. Further tests show anti-MAG > 70000 for which I am taking steroids. My latest symptom is tingling and numbness in my face that is symmetrical. What the heck is that? I thought IgM anti MAG are peripheral neuropathies.

I have the similar symptoms and have gotten 12 infusions of Rituxan over the course of a year. WM is better (reduced from bone marrow biopsy) but neuropathy is worsening. Just got an anti MAG test showing > 70000. you might consider this test.

I haven’t had my Rituximab infusion as of yet, it will take place on July 25th. My prayer is that I want, but I will keep you informed.