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@kim1965

My wife was diagnosed with NET with mass on tail of pancreas, and too many tumors to count on liver. Our NET Specialist Multi-Disciplinary team started her on Lanreotide immediately along with CAP/TEM pills, and after 9 cycles (months), all her tumors on both pancreas and liver were reduced around 80%, and March 1st she finally had surgery and the Team removed remaining mass on pancreas, tail of pancreas, spleen, gall bladder, and debunked a majority of tumors on liver. She is doing ok, managing the diabetes is still a challenge, but the Team believes we have made this a mtn item going forward only maintaining the Lanreotide monthly injections. Listen to your team, each case is different and you will put this back to a mtn. Issue only long term hopefully. You got this. Let us know how we can help.

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Replies to "My wife was diagnosed with NET with mass on tail of pancreas, and too many tumors..."

Thank you, kim1965! So far I am only on Lan injections. I have a very good oncologist, but am thinking after the scans in June to ask for a referral to Roswell Park in Buffalo, NY, where there are NET specialists and ask if I can be put on CAP/TEM or why not.

Does your wife have carcinoid syndrome too? Her tumors and symptoms sounds similar to my husband's.
Trying to get the diarrhea under control is a real challenge too as well as itching.
He had 1st prrt therapy. Will see July what scans show. It sounds like lanreotide and cap/tem is working which is fabulous! It unfortunately these tumors don't get diagnosed early.