1. < Neuroendocrine Tumors (NETs)
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Treatments for Carcinoids

Posted by Teresa, Volunteer Mentor @hopeful33250, Nov 8, 2016

@tresjur @gaylejean @gulzar @joannem @joanney @amyh2439 @lucci50 @derekd @lorettanebraska. Hi carcinoid folks. How is everyone doing? I would like to discuss treatments for carcinoids. Surgery seems to be the most common way of dealing with carcinoids. Please share, if you like, of surgery experiences. I have also heard of PRRT (I hope those are the right initials!) and I've heard about the injections of Sandostatin. Does anyone have any other information about treatments and how well they have worked? While there has been some discussion about the Sandostatin I have not heard much about the PRRT. Would anyone like to weigh on when these various treatments. If you have some information about when these different treatments are used and which seems to be most effective, please share with the group. I'm sure that we would all be interested in hearing your thoughts.

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.

browndog | @browndog | Sep 12, 2022
In reply to @hopeful33250 "Hello @browndog and welcome to Mayo Clinic Connect. I can understand your concern about diet. I..." + (show)
@hopeful33250

Hello @browndog and welcome to Mayo Clinic Connect. I can understand your concern about diet. I have had three surgeries for carcinoids of the upper digestive tract (duodenal bulb) and I do understand that it takes some time to find the right eating plan.

Mayo Clinic offers a virtual support group for NETs patients. It meets, via Zoom, on the first Thursday of each month. There are often guest speakers from Mayo's medical team and there is also an opportunity to talk with others who have NETs and get valuable input on their journey with this disorder. I would recommend that you join the next group that meets on the first Thursday of October at 5:30 p.m. EST. Watch for the registration information when it posts on Connect.

I was helped a great deal by getting a referral to a registered hospital dietician. Also, I've found that using some liquid nutrition drinks can be very helpful. I generally use one in the morning. I often add fruit to the drink and put it in a blender. It will add a lot of valuable vitamins and fiber in an easy-to-digest form.

Have you consulted with a registered dietician at your hospital?

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in reply to hopeful33250
thanks for your thoughts, yes I have seen a dietician, what he told me was that my diet was fine and to break it down from 3 meals per day to 4 or 5 smaller meals. I also juice every day, 4 apples, 5 carrots two sticks of cellery and a 3inch by 1 inch diameter piece of ginger, this drink helps to boost the immune system. i also drink blueberry juice, 12 oz. per day, this seems to reduce the number of bowel movements during the day, still some days are good and some aren't so good. For fibre I eat steel cut oatmeal every morning, and legumes are a big part of my diet.

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Teresa, Volunteer Mentor | @hopeful33250 | Oct 11, 2022
In reply to @carolc66 "I too have NET alongside my colon. So far the doctor is not suggesting any surgery...." + (show)
@carolc66

I too have NET alongside my colon. So far the doctor is not suggesting any surgery. I am having a nuclear test done this week. Then I think that I am going to be having injections.
I have a question for those of you who are having the octreotide injections, my vanity is getting the best of me, but have you lost your hair?

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Hello @carolc66

You mentioned in your post that you would be having a nuclear test done in September and then possibly start injections.

Would like to share any updates regarding the nuclear test?

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carcinoid23462 | @carcinoid23462 | Oct 18, 2022

I was diagnosed in 2003 with an unknown primary (still not found) and tumors in my liver. An interventional radiologist selected by my awesome doctor, Arthur Vinik, an endocrinologist, removed the tumors that were already in my liver. At the time I weighed about 105 lbs, dressed with shoes. I am now at a supportive weight and still receiving Sandostatin injects every 2 weeks. My flushing has created red zones on my face (which I can 'hide' beneath makeup fortunately). I still cannot feel the flushing until it starts to go down my back. When that happens I generally go lay down & try to take a short nap.

I eat a healthy diet. I avoid trigger foods to help reduce my flushing. I walk. I try to stay mentally alert. I will soon be 73. My original oncologist has retired but still keeps a helpful eye on me. I still have many abnormal bowel movements, and periodically mild diarrhea. If I wander off the food choices I was given to follow, I will generally have a problem. My main concern is that I still have an unknown primary of an obviously small size which occasionally decides to make it's presence known.

I wish all of you a long, happy, and vital life! Sandra E. Barkan, Va Beach, Va.

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carcinoid23462 | @carcinoid23462 | Oct 18, 2022
In reply to @carcinoid23462 "I was diagnosed in 2003 with an unknown primary (still not found) and tumors in my..." + (show)
@carcinoid23462

I was diagnosed in 2003 with an unknown primary (still not found) and tumors in my liver. An interventional radiologist selected by my awesome doctor, Arthur Vinik, an endocrinologist, removed the tumors that were already in my liver. At the time I weighed about 105 lbs, dressed with shoes. I am now at a supportive weight and still receiving Sandostatin injects every 2 weeks. My flushing has created red zones on my face (which I can 'hide' beneath makeup fortunately). I still cannot feel the flushing until it starts to go down my back. When that happens I generally go lay down & try to take a short nap.

I eat a healthy diet. I avoid trigger foods to help reduce my flushing. I walk. I try to stay mentally alert. I will soon be 73. My original oncologist has retired but still keeps a helpful eye on me. I still have many abnormal bowel movements, and periodically mild diarrhea. If I wander off the food choices I was given to follow, I will generally have a problem. My main concern is that I still have an unknown primary of an obviously small size which occasionally decides to make it's presence known.

I wish all of you a long, happy, and vital life! Sandra E. Barkan, Va Beach, Va.

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I neglected to include how my doctor treated my carcinoid cancer at the onset, after removing the tumors from my liver.

Dr. Vinik put me on a pump with standard Sandostatin for 3 years and 2 injections every two weeks. My insurance company was not a big fan of that treatment, but they handled it since I was obviously still alive and getting 'healthy'. I have returned to my normal weight. Sandi

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Teresa, Volunteer Mentor | @hopeful33250 | Oct 21, 2022
In reply to @coco1 "My husband had to have a routine physical to renew his life insurance. Bad news, he..." + (show)
@coco1

My husband had to have a routine physical to renew his life insurance. Bad news, he no longer has life insurance. Good news, found the tumor very early. He’ll go to a thoracic surgeon who specializes in NETs in October to figure out our next steps. 🤞🙏

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Hello @coco1

I was thinking about you and wondering if your husband has met with the doctor who specializes in NETs yet?

Will you post an update when it is convenient?

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dbamos1945 | @dbamos1945 | Nov 21, 2022

I have similar questions and would like to be added to your followers. I particularly want to learn about small intestine NET tumor with metastasis to liver. Need info on types of treatment available. Please help.

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Teresa, Volunteer Mentor | @hopeful33250 | Nov 21, 2022
In reply to @dbamos1945 "I have similar questions and would like to be added to your followers. I particularly want..." + (show)
@dbamos1945

I have similar questions and would like to be added to your followers. I particularly want to learn about small intestine NET tumor with metastasis to liver. Need info on types of treatment available. Please help.

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Hello @dbamos1945,

I understand that you are looking to connect with others who have had NET tumors in the small intestine with liver metastasis. Is that correct?

I have had three surgeries for carcinoids in the duodenal bulb, however, there has been no evidence of metastasis at this time. I would also like to introduce you to @patrick031621 who also has liver metastasis. I hope that he will post about his experience as well. We have some other members who have also discussed NETs to the liver, @mkmn @pjsheridan2022 @immmm @gulzar.

How long ago was your NET in the small intestine discovered? Did you have symptoms that led to this diagnosis?

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1 reply
dbamos1945 | @dbamos1945 | Nov 21, 2022
In reply to @hopeful33250 "Hello @dbamos1945, I understand that you are looking to connect with others who have had NET..." + (show)
@hopeful33250

Hello @dbamos1945,

I understand that you are looking to connect with others who have had NET tumors in the small intestine with liver metastasis. Is that correct?

I have had three surgeries for carcinoids in the duodenal bulb, however, there has been no evidence of metastasis at this time. I would also like to introduce you to @patrick031621 who also has liver metastasis. I hope that he will post about his experience as well. We have some other members who have also discussed NETs to the liver, @mkmn @pjsheridan2022 @immmm @gulzar.

How long ago was your NET in the small intestine discovered? Did you have symptoms that led to this diagnosis?

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Thank you for sharing your information. 10/07/22 2nd opinion verified tumor as Carcinoid. PET revealed liver metastasis. Only symptom was recurrent episodes of diarrhea for over a year.
I will try to reach Patrick. Thank you!

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1 reply
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Teresa, Volunteer Mentor | @hopeful33250 | Nov 22, 2022
In reply to @dbamos1945 "Thank you for sharing your information. 10/07/22 2nd opinion verified tumor as Carcinoid. PET revealed liver..." + (show)
@dbamos1945

Thank you for sharing your information. 10/07/22 2nd opinion verified tumor as Carcinoid. PET revealed liver metastasis. Only symptom was recurrent episodes of diarrhea for over a year.
I will try to reach Patrick. Thank you!

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@dbamos1945

It would be good for you to reach out to @patrick031621. He has had experience with NETs for a number of years.

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