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dzerfas (@dzerfas)

Typical Carcinoid Tumor in Lungs

Neuroendocrine Tumors (NETs) | Last Active: Jan 31 5:25pm | Replies (31)

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Hello Group…Just remembered I was a member here. And yes still chugging along with 2 whoppers. right lung and media sternum. Not much change though. Currently on Lanreotide injection every month and just stopped Afinitor. Lots of difficulty by radiologists to measure tumors accurately. Is it bigger…smaller or the same. The last CT very confusing to me but definite enough to stop Afinitor. Dr. Was looking for shrinkage. the wonderful word stable keeps popping up or even worse if the Radiologist looks sideways it looks the same. My nets are non-productive so it is also difficult to understand what symptom is actually attributable to the net. Crazee. right now I am going through an itch phase….itching all over and deep like a skin crawl. I have other afflictions but the NET gets everybody's attention. Everyone is learning.Thanks for reading GAP

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Replies to "Hello Group...Just remembered I was a member here. And yes still chugging along with 2 whoppers...."

Hi @gapsc, welcome back. Great to get an update from you. You'll notice I moved your update to the discussion group called "Typical Carcinoid Tumor in Lungs" where you participated before. I'm sure @hopeful33250 @mgreene and @ghassan will appreciate hearing from you again.

What led to the decision to stop Afinitor?