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

Posted by worriedlovingwife @worriedlovingwife, Feb 11 4:39pm

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

Welcome to Connect, @worriedlovingwife I am sorry that you found us under such stressful circumstances. I don’t blame your husband for not wanting to see that doctor again. Is it possible that the cancer is so small and contained that it will easily be taken care of so not a huge concern? I had NASH cirrhosis and cancer in my liver but the cancer was taken care of with a simple ablation procedure so that’s what I’m thinking could possibly be the case.

I really don’t know anything about your husband’s conditions, I did google ME but that told me little, but I just wanted to express my dismay too that a doctor would be so uncaring and dismissive. Before my cirrhosis was diagnosed the doctor who was my PCP called me on the phone and told me that she thought I had Alzheimer’s! Cirrhosis can cause episodes of confusion so she drew that conclusion after I had one episode. She was history as soon as I could find a new doctor.

I hope you find a new and more caring oncologist, who will be able to help your husband beat his ME and rid him of the cancer on his pelvic bone. Can you possibly just go to a different medical facility so you won’t have to have the mediation with this oncologist?
JK

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@contentandwell

Welcome to Connect, @worriedlovingwife I am sorry that you found us under such stressful circumstances. I don’t blame your husband for not wanting to see that doctor again. Is it possible that the cancer is so small and contained that it will easily be taken care of so not a huge concern? I had NASH cirrhosis and cancer in my liver but the cancer was taken care of with a simple ablation procedure so that’s what I’m thinking could possibly be the case.

I really don’t know anything about your husband’s conditions, I did google ME but that told me little, but I just wanted to express my dismay too that a doctor would be so uncaring and dismissive. Before my cirrhosis was diagnosed the doctor who was my PCP called me on the phone and told me that she thought I had Alzheimer’s! Cirrhosis can cause episodes of confusion so she drew that conclusion after I had one episode. She was history as soon as I could find a new doctor.

I hope you find a new and more caring oncologist, who will be able to help your husband beat his ME and rid him of the cancer on his pelvic bone. Can you possibly just go to a different medical facility so you won’t have to have the mediation with this oncologist?
JK

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Hi JK thanks for replying. I just realized my talk to text did not pick up everything I was saying. He has MEN type 1. When his surgeon first saw the scan he said the same as you “don’t worry I can get it with abalation”” because it just showed two spots. In reality it hundreds of pinpoint spots. He’s stage 4 terminal. I just lost my brother the day after Christmas from multiple myeloma. I feel like we should own stock in MD Anderson because we’ve been going there for 16 years with my brother. So how are you doing now? Are you in remission? I’m at work so can’t look up anything on your type of cancer. Is there a likelyhood it could come back?

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@worriedlovingwife

Hi JK thanks for replying. I just realized my talk to text did not pick up everything I was saying. He has MEN type 1. When his surgeon first saw the scan he said the same as you “don’t worry I can get it with abalation”” because it just showed two spots. In reality it hundreds of pinpoint spots. He’s stage 4 terminal. I just lost my brother the day after Christmas from multiple myeloma. I feel like we should own stock in MD Anderson because we’ve been going there for 16 years with my brother. So how are you doing now? Are you in remission? I’m at work so can’t look up anything on your type of cancer. Is there a likelyhood it could come back?

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@worriedlovingwife When they say stage 4 terminal, does that definitely mean there is no hope of recovery? If you prefer to not answer that I understand.
I am doing well. After they ablated the malignant lesions I had a liver transplant. They still check me with an MRI yearly to make sure the cancer did not metastasize. I have to go for that in April. My liver is the least of my problems these days though.
JK

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@contentandwell

@worriedlovingwife When they say stage 4 terminal, does that definitely mean there is no hope of recovery? If you prefer to not answer that I understand.
I am doing well. After they ablated the malignant lesions I had a liver transplant. They still check me with an MRI yearly to make sure the cancer did not metastasize. I have to go for that in April. My liver is the least of my problems these days though.
JK

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Correct there is no hope to beat it. One of the first things I asked about was a liver transplant and they said it’s not an option because his cancer is endocrine it would come back in the transplanted liver. I’m glad your new liver is the least of your worries but sad that it sounds like you have bigger worries. I’m here to listen if you need to talk
HR

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Hello @worriedlovingwife

I am so sorry to hear about your husband's diagnosis as well as the way he was treated by his oncologist. From what I've read in your posts it sounds as if your husband has had neuroendocrine tumors. Is that correct?

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Hi @worriedlovingwife I thought I would share this additional discussion on MEN-1 so that you can see what others have said: https://connect.mayoclinic.org/discussion/i-have-a-disease-called-multiple-endocrine-neoplasia-1-and-i-have/

I'd also like to tag @markbrinkley and @kbfan19 in hopes they come back to join in on this topic again.

Back to you @worriedlovingwife, to repeat @hopeful33250's question, your husband has neuroendocrine tumor correct? Also, how are you coping with all of this?

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@ethanmcconkey

Hi @worriedlovingwife I thought I would share this additional discussion on MEN-1 so that you can see what others have said: https://connect.mayoclinic.org/discussion/i-have-a-disease-called-multiple-endocrine-neoplasia-1-and-i-have/

I'd also like to tag @markbrinkley and @kbfan19 in hopes they come back to join in on this topic again.

Back to you @worriedlovingwife, to repeat @hopeful33250's question, your husband has neuroendocrine tumor correct? Also, how are you coping with all of this?

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He had two tumors on his pancreas so they removed his pancreas in 2018. It has metastized to his liver and pelvis bone. Hundreds of pinpoints on his liver and one spot on his pelvis.
I’m ok. I pretty much keep things inside because if I talk to my husband it scares him to death. I just lost my brother December 26 to multiple myeloma so I can’t really talk to my dad because he’s dealing with his own grief. I’m strong I’ll get him thru this. Thank you for asking

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@hopeful33250

Hello @worriedlovingwife

I am so sorry to hear about your husband's diagnosis as well as the way he was treated by his oncologist. From what I've read in your posts it sounds as if your husband has had neuroendocrine tumors. Is that correct?

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

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@worriedlovingwife

Correct there is no hope to beat it. One of the first things I asked about was a liver transplant and they said it’s not an option because his cancer is endocrine it would come back in the transplanted liver. I’m glad your new liver is the least of your worries but sad that it sounds like you have bigger worries. I’m here to listen if you need to talk
HR

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Thanks, @worriedlovingwife I am dealing with the current problems, not much to say about them. They are not life-threatening, just very wearying.
JK

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@worriedlovingwife

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

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@worriedlovingwife

Is your husband considered a candidate for PRRT therapy? Here is some information about this relatively new treatment option for patients with neuroendocrine tumors:
https://www.carcinoid.org/2018/01/26/fda-approves-lutathera-peptide-receptor-radionuclide-therapy-prrt-treatment-gastroenteropancreatic-neuroendocrine-tumors/
On this website, you can also find a list of doctors who are considered specialists in treating NETs. A general oncologist is not always the best choice when you have a NET diagnosis.

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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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