Multiple Endocrine Neoplasia 1 (MEN1): What treatments have you had?

Posted by worriedlovingwife @worriedlovingwife, Feb 11, 2020

My husband was diagnosed with MEM and type one in 2017. He had a modified Whipple surgery in 2018 or they removed his pancreas, Splaine, do a DM, lymph nodes, 20% of his stomach, and his gallbladder. They told us they got it all and we were very joyous. October 30 of 2019 we were told that it was back that it has spread to his liver and the oncologist said that there was A spot on his pelvis bone that was “not even worth talking about “when we went back for the treatment plan the oncologist did not even bother to come in the room he insisted sent his PA. To which the PA said that we’re going to get the sandastaton shot once a month and oh by the way the spot on the pelvis bone is Cancer also. I am so livid at this oncologist for not even having the nerve to come in there and tell us this himself but sending a PA in there to tell us something that would change the rest of our life. I am so livid at this oncologist for not even having the nerve to come in there and tell us this himself but sending a PA in there to tell us something that would change the rest of our life. We go to MD Anderson and I requested a new oncologist they said that we have to meet with our doctor one more time to have a mediation. My husband does not even want to see him again. He has been on the shots for three months we go back next week to do more scans to see if they’re working he does not believe that they are because his pelvis hurts all the time. I’m interested to see what other treatments other people with MEN1 are doing and how they are faring

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@worriedlovingwife

Yes he had two on his pancreas so they removed his pancreas in 2018

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As it has been a while since you last posted, @worriedlovingwife, I've been thinking about you and your husband. How is he doing?

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