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Hi Becky, if you go to this site again that @colleenyoung posted, you’ll see a box under the discussion which says, Oldest to Newest. Click on there and you’ll have the option to reverse that to the newest discussions there are some current conversations regarding amyloidosis. The oldest postings were from 2016.
Diagnosed with AL Amyloidosis. What can I expect? https://connect.mayoclinic.org/discussion/diagnosed-with-al-amyloidosis-would-like-to-hear-from-someone-about-what
I still think it was a good idea that you contacted your oncologist. At least you know she has been considering your case and your options for treatment and you gained some more insight as to her concerns for you.
We really never know what curveball life is going to toss our way. I guess it’s our job to either duck, jump, bunt or hit that sucker head on, eh?
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Lori, switched the loading sequence but that caused a problem. It talks about AL Amyloidosis but I forgot the definition of AL. I Googled it and that only created more confusion. Since I have multiple family members (4) besides me, that died from mysterious heart issues, I was led to think I might have the hATTA-CM Amyloidosis which is the Hereditary Amyloidosis.
Then that’s when I Googled the meaning of the AL. Now I’m really confused because of what it means and what’s wrong with my blood. AL means light chain Amyloidosis. I know what you’re going to say, ask your Oncologist, but I don’t want to bother her anymore unless it’s extremely important. I don’t even know how to explain this to you without confusing you too. I assume you know I have MGUS that is classified as being precancerous and is progressing into cancer. Here’s the Enigma, AL means the Amyloidosis is light chain. My official classification of my MGUS is “Kappa light chain IgM”. See the same two words in both of them, Is that just a coincidence or is that a clue to my Amyloidosis being AL and/or hATTR-CM. If the guess or answer is out of your knowledge, I’ll understand. Thanks for being there for me!!!