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Waldenstroms and amyloidosis

Blood Cancers & Disorders | Last Active: Apr 28 8:35pm | Replies (72)
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@colleenyoung

Julie, I moved your message to the Cancer group where you can meet others who may share your husband's diagnosis. I suggest you read the stories and experiences that @gaetanche @mvpdda @tmousetis and @jenrico share in the discussion called "Diagnosed with AL Amyloidosis. What can I expect?" http://mayocl.in/2bQSFQR

@jan52241 @irishk will you share about the treatments you've been getting for amyloidosis and what AZJulie might expect as a caregiver for her husband?

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Replies to "Julie, I moved your message to the Cancer group where you can meet others who may..."
irishk | @irishk | Sep 10, 2016

I went to Mayo Clinic in 2012 when my brother had a stem cell transplant for amyloidosis. There are different types of amyloid, his affected his nervous system. He has done well since his stem cell transplant. There is an amyloidosis research consortium where you can get more information. My brother went to DC last year to attend a forum where the FDA was present to hear patient stories first hand.
http://www.amyloidosis.org/amyloidosis-research-consortium/
Mayo is the best.

irishk

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azjulie | @azjulie | Sep 11, 2016

Thanks for the consortium. Very helpful. Ken is too old for sct. Starts chemo tomorrow. Hopefully Mayo can get it stopped.

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