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Waldenstrom macroglobulinemia: What to expect during watch & wait?
Blood Cancers & Disorders | Last Active: Nov 14, 2023 | Replies (90)Comment receiving replies
Hi @pysullivan, welcome to Connect. Here a few previous discussions in the community about Waldenstrom macroglobulinemia (WM), a type of non-Hodgkin lymphoma (NHL):
- Waldenstroms and amyloidosis https://connect.mayoclinic.org/discussion/waldenstroms-and-amyloidosis/
You might also be interested in this discussion:
- Non Hodgkin's Lymphoma- Watch & Wait Approach https://connect.mayoclinic.org/discussion/non-hodgkins-lymphoma-watch-wait-approach/
I'm tagging other members @sstouten @azjulie @dcp45 who have also talking about Waldenstrom. While we wait for others to join in, PYSullivan, why don't you tell us a bit more about you? Have you been recently diagnosed with WM? I assume watch and wait is the proposed treatment option at the moment, correct?
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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.