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.

@nick0820

Thank you so much Ginger! I will certainly review the links that you’ve provided! Greatly appreciated!! I am fearful and of course apprehensive— but I’m very hopeful all will be well following this journey! Thanks!

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My apologies!, Thank you so much Colleen Young!!

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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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@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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@rtinaz, I would like to say Welcome to Connect and to say thank you for taking the time to share your experience. I do not have
amloydosis, but I know that your experience is going to be encouraging to anyone who does, and also to their loved ones. I believe that other patients are going to want to ask you questions and to hear more of your experience.
Do you have to be hospitalized for the Velcade infusions?

Thank you, and Bless you for your service in Viet Nam.

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