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.

Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Nov 8, 2016

@tresjur @gaylejean @gulzar @joannem @amyh2439 @lucci50 @derekd @lorettanebraska. Ok, I'll start off this discussion. I have had three carcinoids in the upper digestive tract and they have all been relatively small. Surgery has been the treatment for these. Two of the surgeries required a resection of the area where the carcinoid was found. Because these first two surgeries were major surgeries I was in the hospital from 6 -7 days with a gastric nasal tube and nothing by mouth for the first 4 or 5 days. The third surgery was done by endoscopy at University of Michigan. It was an outpatient procedure and was a very easy procedure to tolerate and recover from.

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gaylejean | @gaylejean | Nov 8, 2016

I am also curious if immunotherapy would work for NET?

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1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Nov 8, 2016
In reply to @gaylejean "I am also curious if immunotherapy would work for NET?" + (show)
@gaylejean

I am also curious if immunotherapy would work for NET?

Jump to this post

@gaylejean Thanks for posing that question. I have not heard of it myself.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Nov 8, 2016

Here is a link from the Carcinoid Cancer Foundation about 10 Highlights of the Year 2014 for the Carcinoid and Neuroendocrine Tumor Community
http://www.carcinoid.org/2014/12/18/10-highlights-of-the-year-2014-for-the-carcinoid-and-neuroendocrine-tumor-community/ Of the 10 highlights, see the first 4 that mention treatment breakthroughs with brief plain language descriptions:
1) Gallium 68 Clinical Studies
2) PRRT Clinical Trials
3) FDA Approves Lanreotide for Gastroenteropancreatic Neureoendocrine Tumors
4) Bringing the Promising Field of Immunotherapy to NETs

Using key search terms from this article you should be able to find more up-to-date information about each of these 4 areas.

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1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Nov 9, 2016
In reply to @colleenyoung "Here is a link from the Carcinoid Cancer Foundation about 10 Highlights of the Year 2014..." + (show)
@colleenyoung

Here is a link from the Carcinoid Cancer Foundation about 10 Highlights of the Year 2014 for the Carcinoid and Neuroendocrine Tumor Community
http://www.carcinoid.org/2014/12/18/10-highlights-of-the-year-2014-for-the-carcinoid-and-neuroendocrine-tumor-community/ Of the 10 highlights, see the first 4 that mention treatment breakthroughs with brief plain language descriptions:
1) Gallium 68 Clinical Studies
2) PRRT Clinical Trials
3) FDA Approves Lanreotide for Gastroenteropancreatic Neureoendocrine Tumors
4) Bringing the Promising Field of Immunotherapy to NETs

Using key search terms from this article you should be able to find more up-to-date information about each of these 4 areas.

Jump to this post

@colleenyoung Thanks Colleen!

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Nov 9, 2016

@tresjur @gaylejean @gulzar @joannem @joanney @amyh2439 @lucci50 @derekd @lorettanebraska Has anyone had any personal experience with any of these studies and/or treatments that are listed in Colleen's post? We would like to hear from you.

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wordnoid | @wordnoid | Nov 9, 2016

PRRT is hung up with the FDA approval process. I can't post messages with links yet, but if you Google this text with quotation marks, you will see a relatively recent news release with the basics.

"Advanced Accelerator Applications Announces Presentations on Lutathera® NETTER-1 Phase III and NeoBOMB1 at EANM"

My understanding based on the medical literature I've combed through since December 2015, when I was diagnosed, is that surgery is considered the first-line treatment for carcinoid. Whether surgery can be done or not depends on a lot of other things. But surgery is first.

I was diagnosed with stage 2 multifocal carcinoid (small intestine) after exploratory surgery last year. This was after a small bowel obstruction in Dec 2014 that left me with symptoms that got progressively worse until surgery in December 2015. To date, not a single one of my tumors has been detected by anything but the human eye (the surgeon's) despite multiple scans and colonoscopies, endoscopies, etc. The tumors were a complete surprise.

Because I'm still experiencing symptoms 11 months after those 5 tumors were removed from my small intestine, my oncologist is trying me on Octreotide to see if my symptoms respond. First attempt at Octreotide did not go well because I **may** have had an allergic reaction to the test dose. I am a lifelong (but very mild and completely controlled) asthmatic and 20 minutes after the test dose was injected, I started experiencing wheezing. However, I was getting over a cold anyway and so it might *not* have been an allergic reaction. We are trying another test dose at the end of the month. If I have the same reaction, we will have to develop a Plan B.

Apart from the maybe-allergic reaction, my response to the test dose of Octreotide seems to have been typical according to my oncologist: bad stomach-ache and headache 5 hours after the shot. Oncologist indicates that this goes away after a couple of days when your body gets used to it. I'm really hoping I don't have the maybe-allergic reaction because I'm frankly not sure what they'll do for Plan B.

REPLY
3 replies
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Nov 9, 2016
In reply to @wordnoid "PRRT is hung up with the FDA approval process. I can't post messages with links yet,..." + (show)
@wordnoid

PRRT is hung up with the FDA approval process. I can't post messages with links yet, but if you Google this text with quotation marks, you will see a relatively recent news release with the basics.

"Advanced Accelerator Applications Announces Presentations on Lutathera® NETTER-1 Phase III and NeoBOMB1 at EANM"

My understanding based on the medical literature I've combed through since December 2015, when I was diagnosed, is that surgery is considered the first-line treatment for carcinoid. Whether surgery can be done or not depends on a lot of other things. But surgery is first.

I was diagnosed with stage 2 multifocal carcinoid (small intestine) after exploratory surgery last year. This was after a small bowel obstruction in Dec 2014 that left me with symptoms that got progressively worse until surgery in December 2015. To date, not a single one of my tumors has been detected by anything but the human eye (the surgeon's) despite multiple scans and colonoscopies, endoscopies, etc. The tumors were a complete surprise.

Because I'm still experiencing symptoms 11 months after those 5 tumors were removed from my small intestine, my oncologist is trying me on Octreotide to see if my symptoms respond. First attempt at Octreotide did not go well because I **may** have had an allergic reaction to the test dose. I am a lifelong (but very mild and completely controlled) asthmatic and 20 minutes after the test dose was injected, I started experiencing wheezing. However, I was getting over a cold anyway and so it might *not* have been an allergic reaction. We are trying another test dose at the end of the month. If I have the same reaction, we will have to develop a Plan B.

Apart from the maybe-allergic reaction, my response to the test dose of Octreotide seems to have been typical according to my oncologist: bad stomach-ache and headache 5 hours after the shot. Oncologist indicates that this goes away after a couple of days when your body gets used to it. I'm really hoping I don't have the maybe-allergic reaction because I'm frankly not sure what they'll do for Plan B.

Jump to this post

Hello @wordnoid. Welcome, I'm glad to see that you have joined Mayo Connect. Thanks for your post and adding to our discussion regarding carcinoid treatments. As with most carcinoid patients, your story is quite unique and the attempted treatment with Octreotide is also something that I have not heard of before. You mentioned that your carcinoids were not seen with endoscopies and only surgeries, is that correct? I have had three carcinoids of the upper digestive tract and they were all diagnosed with upper endoscopies. You mentioned that you began the Octreotide because of symptoms. If you care to share more about the type of symptoms you have been having that would be helpful to our discussion. Thanks again for being part of Mayo Connect. I hope that you find this online patient support group as helpful as many of us have. We are glad to have you as part of our online community!

REPLY
wordnoid | @wordnoid | Nov 9, 2016
In reply to @wordnoid "PRRT is hung up with the FDA approval process. I can't post messages with links yet,..." + (show)
@wordnoid

PRRT is hung up with the FDA approval process. I can't post messages with links yet, but if you Google this text with quotation marks, you will see a relatively recent news release with the basics.

"Advanced Accelerator Applications Announces Presentations on Lutathera® NETTER-1 Phase III and NeoBOMB1 at EANM"

My understanding based on the medical literature I've combed through since December 2015, when I was diagnosed, is that surgery is considered the first-line treatment for carcinoid. Whether surgery can be done or not depends on a lot of other things. But surgery is first.

I was diagnosed with stage 2 multifocal carcinoid (small intestine) after exploratory surgery last year. This was after a small bowel obstruction in Dec 2014 that left me with symptoms that got progressively worse until surgery in December 2015. To date, not a single one of my tumors has been detected by anything but the human eye (the surgeon's) despite multiple scans and colonoscopies, endoscopies, etc. The tumors were a complete surprise.

Because I'm still experiencing symptoms 11 months after those 5 tumors were removed from my small intestine, my oncologist is trying me on Octreotide to see if my symptoms respond. First attempt at Octreotide did not go well because I **may** have had an allergic reaction to the test dose. I am a lifelong (but very mild and completely controlled) asthmatic and 20 minutes after the test dose was injected, I started experiencing wheezing. However, I was getting over a cold anyway and so it might *not* have been an allergic reaction. We are trying another test dose at the end of the month. If I have the same reaction, we will have to develop a Plan B.

Apart from the maybe-allergic reaction, my response to the test dose of Octreotide seems to have been typical according to my oncologist: bad stomach-ache and headache 5 hours after the shot. Oncologist indicates that this goes away after a couple of days when your body gets used to it. I'm really hoping I don't have the maybe-allergic reaction because I'm frankly not sure what they'll do for Plan B.

Jump to this post

Hi, Hopeful--yes, you have that right, my tumors were never caught by colonoscopy, upper endoscopy, CT scans, or small bowel follow-through. Largest was just under 2 cm and that was probably the one that caused the small bowel obstruction. My symptoms began immediately after the obstruction resolved and have been consistent to this day almost 2 years later. I have nausea constantly which can be relieved only by eating --does not have to be much, a cracker will do it. I have a burning ache in my lower right abdomen which cannot be explained. Finally, incapacitating fatigue at irregular intervals. I participated in the Gallium-68 clinical trial at the University of Iowa this fall and that scan showed diffuse uptake around the pancreas but no sign of a tumor. The Iowa physician and my own oncologist say they cannot rule out tumors as the cause of my symptoms, particularly since I am one of the 25% of carcinoid patients with tumors that are multifocal. The reason they want to try me on Octreotide is to see if it relieves my symptoms. If it does that will be proof that the carcinoid is the cause (all other causes having been ruled out).

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Nov 10, 2016
In reply to @wordnoid "PRRT is hung up with the FDA approval process. I can't post messages with links yet,..." + (show)
@wordnoid

PRRT is hung up with the FDA approval process. I can't post messages with links yet, but if you Google this text with quotation marks, you will see a relatively recent news release with the basics.

"Advanced Accelerator Applications Announces Presentations on Lutathera® NETTER-1 Phase III and NeoBOMB1 at EANM"

My understanding based on the medical literature I've combed through since December 2015, when I was diagnosed, is that surgery is considered the first-line treatment for carcinoid. Whether surgery can be done or not depends on a lot of other things. But surgery is first.

I was diagnosed with stage 2 multifocal carcinoid (small intestine) after exploratory surgery last year. This was after a small bowel obstruction in Dec 2014 that left me with symptoms that got progressively worse until surgery in December 2015. To date, not a single one of my tumors has been detected by anything but the human eye (the surgeon's) despite multiple scans and colonoscopies, endoscopies, etc. The tumors were a complete surprise.

Because I'm still experiencing symptoms 11 months after those 5 tumors were removed from my small intestine, my oncologist is trying me on Octreotide to see if my symptoms respond. First attempt at Octreotide did not go well because I **may** have had an allergic reaction to the test dose. I am a lifelong (but very mild and completely controlled) asthmatic and 20 minutes after the test dose was injected, I started experiencing wheezing. However, I was getting over a cold anyway and so it might *not* have been an allergic reaction. We are trying another test dose at the end of the month. If I have the same reaction, we will have to develop a Plan B.

Apart from the maybe-allergic reaction, my response to the test dose of Octreotide seems to have been typical according to my oncologist: bad stomach-ache and headache 5 hours after the shot. Oncologist indicates that this goes away after a couple of days when your body gets used to it. I'm really hoping I don't have the maybe-allergic reaction because I'm frankly not sure what they'll do for Plan B.

Jump to this post

@wordnoid Thanks for the additional information. Usually the symptoms of carcinoids involve flushing and diarrhea, however, the nausea and fatigue is certainly something that I can relate to as well. Like you, I've found that just a little bit of food (I also use crackers) will relieve the nausea. I'm also interested in being evaluated with Gallium 68, but have not gotten to that yet. Do you also have the other tests to check Serotonin levels, CaG and the 24 hour urine? Thanks again for sharing your story, it is very helpful to us all.

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