I too have Waldenstrom macrogrobulinemia. Six years ago they thought I had NHL, BUT, Now after being in remission for three years, my bloodwork is now showing it us that not NHL! The same infusion is used for both..that is why after 3 years of infusions my blood labs are pointing more toward this. Will be same infusions whenever they feel it is time to start up again. BTW, I also have primary left lobe lung cancer and a small spot on right lung. Had radiation for left lung..stoppedit. Next week I get a CT scan to see if either has grown. And July I get a PET scan looking for any new tumors. Life is not fun. I battle fatigue all the time, then add insomnia. Sometimes I'm awake all.night.... Thank you for this group. BTW,I had a liver transplant in 2003 for an autoimmune liver disease, PBC.

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