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Yellersam (@yellersam)

Waldenström's Macroglobulinemia

Blood Cancers & Disorders | Last Active: 2 days ago | Replies (105)

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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.

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Replies to "Thank you for reaching out for help. No doubt you are overwhelmed right now. Mayo Clinic..."

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.

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 😊👍