Diagnosed with AL Amyloidosis. What can I expect?

Posted by jenrico @jenrico, Mar 13, 2016

Diagnosed with AL Amyloidosis. Would like to hear from someone about what to expect. Have not started treatment yet.

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@azlatina

Hi @colleenyoung ,
The links dont seem to work any longer. Are there updated ones we can view about amyloidosis?
Thanks,
Michelle

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@azlatina, Please accept my Welcome to Mayo Connect. I could not open that link about Amyloidosis either. However, even though I have no experience with Amyloidosis', I want to I want to share some information with you:
Here is the link to information about Amyloidosis from Mayo Patient Care and Health Information :
https://www.mayoclinic.org/diseases-conditions/amyloidosis/symptoms-causes/syc-20353178
And here are 2 features that might give you some insights, even though they are not recent:
https://newsnetwork.mayoclinic.org/discussion/what-is-amyloidosis-and-10-signs-you-might-have-it/
https://intheloop.mayoclinic.org/2017/10/31/a-new-double-take-second-opinion-points-to-future-of-hope/
Michelle, Have you or a loved one been diagnosed?

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@rtinaz

Hello Bob, so sorry to hear of your wife’s diagnosis. Hopefully her treatment can be performed at a Mayo facility as they are familiar with this disease. They literally saved my life for which I will ever be forever grateful.
In late 2012 I began puffing up everywhere. After months of seeing countless doctors, with zero success, a kidney biopsy that was analyzed at Mayo Rochester indicated I had Amyloidosis. In my case, fortunate it only affected my kidneys & bladder.
More than likely she will have minor surgery for a port.
After an extensive physical, they collected 3,000,000+ of my stem cells, Then here comes the nasty, Chemo injection. Not fun…..after things settle down the stem cells are put back, where “hopefully” they take and grow.
At 6’ 3”, my low was 149 lbs, now retaining 170. Chemo not a great weight loss program.
It was determined mine was caused by Agent Orange exposure in Vietnam Nam. I have a Velcade infusion every 2 weeks…..forever.
There is so much more to tell, but the Mayo staff is 5*, and explains everything in detail, and layman’s terms so you understand.
Best wishes…..
Bob Toth

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Hoping the best for you Bob, You served with my brother James and he got Multiple Myeloma from his exposure to Agent Orange. Sadly, he died in 1999 from it. Also, Thank you for your service to Our Country!!!

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@azlatina

Hi @colleenyoung ,
The links dont seem to work any longer. Are there updated ones we can view about amyloidosis?
Thanks,
Michelle

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Thanks for pointing that out, @azlatina. Unfortunately that webinar is no longer available. However, here are a couple of Youtube videos with Mayo Clinic cardiologist Martha Grogan, MD, and hematologist Prashant Kapoor, MD.

Amyloidosis: What you need to know – Mayo Clinic

Cardiac Amyloidosis – Treatment Options

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