← Return to Waldenstrom macroglobulinemia (WM): Deciding treatment options

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@gstone I joined https://www.nccn.org as a patient. It contains a lot of information. My Hema/Onco follows the NCCN guidelines, and has treated a few WM patients. She is also open to outside consultation, but it will be out of pocket unless it's part of a trial. My take is if I was a Dr, I would be able to view much more detailed NCCN guidelines than I can as a patient. My impression is that my double Wild Type WM and FISH results is rare and may require a treatment different than yours. I would be very interested in how your second opinion works out. Especially what additional testing is required and if they require you to travel to Boston for an examine or lab work. Please keep us informed.

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Replies to "@gstone I joined https://www.nccn.org as a patient. It contains a lot of information. My Hema/Onco follows..."

@dcuste I am also the rare double wild type. What treatment has been recommended to you? My primary symptom is peripheral neuropathy.