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?

Julie, just be sure to touch base with nurses that he’s okay. They generally cover more than one patient. If you think he’s too weak, you can tell them and perhaps have a doctor check him out. As far as reading too much on internet, you can find everything you need in one place sciencedaily.com No fee and comprehensive. And taking breaks is important as well. Overanalysis can create paralysis. You can get too tired, and that’s not healthy for you. Then when you don’t take care of yourself first, it’s difficult to take care of him. So try to get sleep and eat well and hydrate too with water that has electrolytes or Gatoraide. Daily vitamin helps too. Sometimes as we get older, hopefully not always, we don’t get full attention in hospital. So being diplomatically assertive to ask for help and check on him. My thoughts are with you.


I, too, was diagnosed with WM in 2015. I am stable so there are no treatments. Every 3 mos. I go for labs. Every 6 mos. I see my oncologist. I’ve been told that some people with WM never have symptoms so they never need treatments. Could I be so blessed?! Anyway, it is tough having such a rare cancer, one nobody has ever heard of. My doctor says she has one other patient with WM. But I did meet a wonderful girl not far from me with the same WM. We have become quite close & I treasure her insights & knowledge. We have become quite supportive of each other. Also, I recommend you get in touch with the International Waldenstorm Macroglobelemia Foundation (IWMF) on line. They will share with you a wealth of information and support. Keep in touch. I care.


Welcome to Connect Warren. So great to have someone to connect with Julie who understands what she is facing.

Julie – What other questions do you have for the doctor at the upcoming appointment?

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Coleen, I read a lot. I’m not a doctor. I appreciate your measured responses and high level of expertise in working with people in the throes of a difficult disease. Kudos to you.

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