Waldenstroms and amyloidosis

Posted by azjulie @azjulie, Sep 8, 2016

Diagnosed with the Waldenstroms a year ago, just today with amyloidosis. Will start treatment next week. Anyone have these or know anything?

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Don't know what the envelope dialysis is but I have the Walden storms ..whatever. life is what it is . you get what you get. All you can do is say a prayer and pray maybe take communion now and then

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Hi @colleenyoung

Closing the loop... The "final" result appears to be that I am a member of all three clubs – CLL, WM, and MZL – each in different regions: bone marrow, blood, and lymph nodes. Not too common apparently. So, no longer a fit for the CLL trial. The decision (barring some late arriving 2nd bone marrow test results that *shouldn't* impact the plan) is to start me on Zanubrutinib at the end of May. So, I plan to do a deep dive on Z before then.

Paul

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