1. < Neuroendocrine Tumors (NETs)
Mentor

Welcome to the NETs Group! Come say hi.

Posted by Teresa, Volunteer Mentor @hopeful33250, Jan 20, 2017

Hello and welcome
Let's pull up our chairs in a circle and check in with each other and talk about how we are doing with our NET diagnosis. Any new tests, meds or treatments going on for you? What about your symptom control? Any concerns you have?

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

carcinoid23462 | @carcinoid23462 | Sep 6, 2022
In reply to @hopeful33250 "Hello @sophiarose Personally, I have never taken either octreotide or lanreotide so I do not know..." + (show)
@hopeful33250

Hello @sophiarose

Personally, I have never taken either octreotide or lanreotide so I do not know the difference between the two. I understand that one is easier to inject than the other. Here is an article from the National Library of Medicine about the two different medications, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6643159/. I hope some of our members who have used these meds will be able to answer this question for you. Also, this might be a good question to ask the NETs support group on the first Thursday of each month.

The fact that the primary NET is unknown is a common problem. Have you had a Gallium 68 scan to try to determine where the primary is located?

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I was diagnosed with Carcinoid Cancer w/an unknown primary in 2003. For 3 years I was on a pump 24/7 with Sandostatin and 2 Sandostatin injections every 2 weeks. After my diagnosis, my doctor had an Interventional Radiologist examine my liver for tumors. He found 3 of varying sizes which he proceeded to 'kill'. Those have not returned as far as I know.

The flushing has left several 'red vein' spots on my face of varying sizes. I use foundation to cover them when I need to look my best. Other days, I just ignore them.

I still receive 1 Sandostatin injection every 2 weeks to try to control the flushing & progression. From what other English patients have told me in the past, difficulties with Lanreotide is about the same as Sandostatin. The one thing I do know from past relationships with English patients, is that unless you have funds to pay for additional treatment, the normal limit of Lanreotide is 1 injection every month. I hope that has changed by now. If I had lived in England, I'm not sure I would still be here.

Wishing better days for everyone!
Sandi

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2 replies
mit | @mit | Sep 6, 2022
In reply to @carcinoid23462 "Think positive thoughts as you travel to the Mayo! I'm sure they will work diligently to..." + (show)
@carcinoid23462

Think positive thoughts as you travel to the Mayo! I'm sure they will work diligently to help your husband! Sending big hugs!

Sandi Barkan

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Thank you so much for your kind and supportive response. I will keep you in my prayers.

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Sep 6, 2022
In reply to @mit "Hello, I’m not really sure if I’m doing this right, but I’ll try. My husband had..." + (show)
@mit

Hello, I’m not really sure if I’m doing this right, but I’ll try. My husband had surgery in March for an insulinoma and was doing very well until Aug. 9th when his blood sugar plummeted. He’s been in the hospital since then but have an appt. at Mayo Sept14th. He’s flying up there in an air ambulance and I’ll drive up. We have no idea what to expect, but have faith in the doctors there (faith in Jesus first, tho). I just wanted to see what this group is like…it seems very friendly and welcoming.

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Hello @mit and welcome to Mayo Connect. Yes, you are doing this right!

I am so glad to hear that your husband will be seen at Mayo later this month. We have a discussion group devoted to insulinoma. Here is the link, https://connect.mayoclinic.org/discussion/insulinoma-1/. You might be interested in reading the posts and having some information prior to your husband's visit.

What type of surgery did your husband have in March? Did your husband's current doctor refer him to Mayo or did you decide to do this on your own?

REPLY
1 reply
mit | @mit | Sep 6, 2022
In reply to @hopeful33250 "Hello @mit and welcome to Mayo Connect. Yes, you are doing this right! I am so..." + (show)
@hopeful33250

Hello @mit and welcome to Mayo Connect. Yes, you are doing this right!

I am so glad to hear that your husband will be seen at Mayo later this month. We have a discussion group devoted to insulinoma. Here is the link, https://connect.mayoclinic.org/discussion/insulinoma-1/. You might be interested in reading the posts and having some information prior to your husband's visit.

What type of surgery did your husband have in March? Did your husband's current doctor refer him to Mayo or did you decide to do this on your own?

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He had an insulinoma removed from the tail of his Pancreas and got along very well. We were unaware that they return. Our doctors referred us to Mayo.

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Sep 6, 2022
In reply to @carcinoid23462 "I was diagnosed with Carcinoid Cancer w/an unknown primary in 2003. For 3 years I was..." + (show)
@carcinoid23462

I was diagnosed with Carcinoid Cancer w/an unknown primary in 2003. For 3 years I was on a pump 24/7 with Sandostatin and 2 Sandostatin injections every 2 weeks. After my diagnosis, my doctor had an Interventional Radiologist examine my liver for tumors. He found 3 of varying sizes which he proceeded to 'kill'. Those have not returned as far as I know.

The flushing has left several 'red vein' spots on my face of varying sizes. I use foundation to cover them when I need to look my best. Other days, I just ignore them.

I still receive 1 Sandostatin injection every 2 weeks to try to control the flushing & progression. From what other English patients have told me in the past, difficulties with Lanreotide is about the same as Sandostatin. The one thing I do know from past relationships with English patients, is that unless you have funds to pay for additional treatment, the normal limit of Lanreotide is 1 injection every month. I hope that has changed by now. If I had lived in England, I'm not sure I would still be here.

Wishing better days for everyone!
Sandi

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@carcinoid23462
Hello Sandy

I appreciate you sharing your treatments for carcinoids. You mentioned that the doctor killed the liver tumors. Would you share what type of procedure was used on the liver tumors?

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mcrey1 | @mcrey1 | Sep 7, 2022

Have a small 1.7cmx1.3cm NET accidentally discovered during a CT scan. Appears to be non functional with no other cells found in the body after dotatate pet mri. Will find out what our options are tomorrow 09/08/22.
The tumor doesn't appear to have grown after two months of testing. Any hope of monitoring? I'm a 76 year old farmer trying to keep it going.

REPLY
1 reply
sophiarose | @sophiarose | Sep 8, 2022
In reply to @carcinoid23462 "I was diagnosed with Carcinoid Cancer w/an unknown primary in 2003. For 3 years I was..." + (show)
@carcinoid23462

I was diagnosed with Carcinoid Cancer w/an unknown primary in 2003. For 3 years I was on a pump 24/7 with Sandostatin and 2 Sandostatin injections every 2 weeks. After my diagnosis, my doctor had an Interventional Radiologist examine my liver for tumors. He found 3 of varying sizes which he proceeded to 'kill'. Those have not returned as far as I know.

The flushing has left several 'red vein' spots on my face of varying sizes. I use foundation to cover them when I need to look my best. Other days, I just ignore them.

I still receive 1 Sandostatin injection every 2 weeks to try to control the flushing & progression. From what other English patients have told me in the past, difficulties with Lanreotide is about the same as Sandostatin. The one thing I do know from past relationships with English patients, is that unless you have funds to pay for additional treatment, the normal limit of Lanreotide is 1 injection every month. I hope that has changed by now. If I had lived in England, I'm not sure I would still be here.

Wishing better days for everyone!
Sandi

Jump to this post

Hi Sandi
You are a blessed person 19 year. Wow!!!!
I was on lanreotide and had to stop it did nothing but make me sicker and now in PT for encapsulated abscess
I am now on octreotide and the diarrhea and flushing is gone
However neither drug has stopped the tumors in my liver from growing and more arriving
I have an unknown primary net tumor
Question how did they kill your liver tumors?
Thank you for your response
Best wishes

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Sep 8, 2022
In reply to @mcrey1 "Have a small 1.7cmx1.3cm NET accidentally discovered during a CT scan. Appears to be non functional..." + (show)
@mcrey1

Have a small 1.7cmx1.3cm NET accidentally discovered during a CT scan. Appears to be non functional with no other cells found in the body after dotatate pet mri. Will find out what our options are tomorrow 09/08/22.
The tumor doesn't appear to have grown after two months of testing. Any hope of monitoring? I'm a 76 year old farmer trying to keep it going.

Jump to this post

Hello @mcrey1 and welcome to Connect. I am so glad that your tumor was found early on, that is just great, and nonfunctional is even better. Do you mind sharing the location of your NET?

You mentioned that the discovery of your NET was incidental. I'm assuming that you had no other symptoms. Is that correct?

I'm looking forward to hearing from you again and I hope that you have good news at your appointment today. Will you post and let me know about the results of that appointment?

REPLY
mcrey1 | @mcrey1 | Sep 8, 2022

The NET is located in the uncinate process area. There were no symptoms. Will update with action plan after the meeting today.

REPLY
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