Waldenström's Macroglobulinemia

Thankyou so much I greatly appreciate it I feel really lost all I know is I have a rare blood cancer and they say I’ll be a case that people refer back to and they’ve never seen lesions on anybody like mine were at the time and Bla Bla and thinks since I started to arm myself with some knowledge are getting held back from my health records I greatly appreciate your helpful links 😊👍

I have been on Zanubrutinib monotherapy, same dosing since my diagnosis in July/Sept, 2022. I had 25% improvement after 2 weeks and 50% after 6 months. No side effects. Of course everyone can react differently, but I am grateful the medication has been working for me. Thanks to everyone that responded to my original post.

Thank you for sharing. We look forward to your feedback on Zanubrutinib.

Yes, I was diagnosed in Aug. 2022, underwent 12 infusions with retuxin and several IVIG . I'm now on Zanubrutinib 160mg twice daily, since Feb. 15 2023. Oncologist is looking at blood work every 2 weeks for improvement.

My mother-in-law was diagnosed with Waldenstrom's in 1981. She was living here in Arizona and Toledo, Ohio (summers). After lots of trials and tribulations with uncomfortable bouts of chemo, we lucked out in Toledo. An oncologist (who became her regular doctor) learned of a trial in Seattle for Waldenstrom's. A doctor (I believe affiliated with the U of Washington) had done research on Waldenstrom's because it was so rare and was having great success with the chemotherapy. It consisted of two or three original cancer drugs. This was about 1983. He started my mother-in-law on it (along with dexamethasone for side effects)) and she went into permanent remission. She went off chemo after about two years. She died 20 years later of something totally unrelated.

You might check the University of Washington and see where they are with Waldenstrom's. Our experience was 40 years ago. They saved my mother-in-law's life.

Thank you for reaching out for help. No doubt you are overwhelmed right now. Mayo Clinic has several WM specialists. WM is rare and most doctors are not familiar with symptoms. I would recommend contacting and joining the I.W.M.F. (International Waldenstrom’s Macroglobulinemia Foundation) for excellent and accurate educational and patient support. https://iwmf.com. I would also suggest getting in touch with our Australian SG Leader -
Australia WMozzies(link is external) David Young
Phone: +0428 187 025
Email: david@davidyoung.com.au
He can connect you with WM doctors and will be an excellent source of support. I will be happy to help in any way I can. I happen to be an IWMF MInnesota and WIsconsin support group leader.

Hello I’m Ben I’m 36 I live in Australia I was diagnosed in 2021 I had rash/sores on my lower legs and local doctor prescribed penicillin for 7 months before going to another doctor who done blood tests and swabbed me thankfully I feel I’m getting lied to I was stage 4 upon diagnosis and had plasma exchange 3 times to bring it down to get a proper reading I have severe pain in my stomach area and there not showing me my X-rays but I had a lot of growths and now there held back from me

I don't have very much to add to the helpful responses already in this group chat, other than to express my concern and caring. "Watching and waiting" can be stressful, as it encourages scrutiny of the slightest physical change. The IWMF mentioned above is exceptionally helpful in this regard, as it offers high-quality material of all sorts. Its resources, including a newsletter with articles from top practitioners and scientists, can help with one's equilibrium. If you join you will receive a great collection of literature, notices of other resources, and fellowship with fellow WMers. I wish you the best.

I am just over 1000 . from what i researched that is not terrible . I do have tingling and some stinging in my feet and some tingling in my fingers as well. i also get light headed when i go from sitting to standing up .I am new to this site and thought i would reach out and maybe get some answers as i am having a hard time finding some .I do not know anyone personally that has this that i can talk to . Thanks for your interest!!!

We WMers know and understand from personal experience that one patient’s levels may mean we are symptomatic and need treatment while another patient may have higher levels but asymptomatic and not need treatment. What symptoms are you experiencing along with concerning levels? We truly are all different and I relate to how there is so much to process. You are not alone.