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Adrenocortical carcinoma (ACC) outcomes: What to expect?
Neuroendocrine Tumors (NETs) | Last Active: Oct 10 2:25pm | Replies (36)Comment receiving replies
Have you consulted with Dr. Jaydira Del Rivero at NIH?
There are only a few true experts in the country who deal with ACC on a regular basis. She and her surgeon Dr. Hernandez have some amazing success stories. He’s often willing to do surgery when other doctors won’t.
Also, I would highly recommend joining one of the Facebook groups. You will get tons of great advice and connect with many others with ACC. There are some new trials and also some people are having luck with different chemos or a keytruda and Lenvima combo. Some of the other experts are Dr. Habra and Campbell in Texas, Dr. Hammer at the Univ of Michigan and there’s Dr. Antonio Fojo at Columbia Presbyterian University in NYC.
I am a 7 year survivor myself. I have had a reoccurrence in my abdomen that I had surgically removed (sadly I had a biopsy before they told me it was ACC) but no other treatments. I never have taken Mitotane.
Highly recommend the Facebook groups as they are a wealth of knowledge! Just look up adrenal cortical carcinoma and you’ll find them.
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Thanks for the info about the doctors and the studies. I’m going to look into facebook groups. I’m still at the point where it is emotionally challenging to do too much research. The old research from the 1990s is so depressing. And hard to find anything else. Your information gives me a place to look!