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@kbfan19

I have men-1 and have had 9 operations . Doctors at university of Pennsylvania are very knowledgeable and have seen many cases.

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Replies to "I have men-1 and have had 9 operations . Doctors at university of Pennsylvania are very..."

Hi @kbfan19 and welcome to Connect.
Thank you for re-igniting this discussion. I’d like to bring a few other members into this discussion. Please meet @jmbjar, @jamimen1 and @hopeful33250.

Kbfan, we look forward to getting to know more about you. What other treatment or management do you use besides surgery or are the tumors managed by surgery only? Have you had genetic testing?

Hi colleenyoung. Thanks for the welcome. I’m currently taking chemotherapy for liver and pancreatic cancer. What are some of the therapys others are using? There are some chat groups for men1 patients.

I am also MEN 1, I am currently on a chemo regimin for Pancreatic Ppomas. At this time the plan is to attempt to shrink some of the tumors to make removal of the pancreas easier. I also have a monthly lanreotide injection.

@kbfan19 and @jamimen1–I didn’t understand at first that “men-1” was related to pancreatic cancer and other pancreas problems. My mother died from pancreatic cancer in 1993, and I have been concerned about the possibility that I may get it at some point. She had T2 diabetes, as do I, and I now have possible cysts on my right kidney that showed up on an MRI of my lumbar spine. I’m seeing my Internist about this tomorrow. I would like to understand more about how long you have had your pancreatic issues, how you knew you had a problem, and what your outlooks are if you don’t mind sharing the information. I will very much appreciate your help with my understanding. I’m sorry you are both dealing with these painful problems an I hope the best for you. Gail B

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