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.

lenorahaston | @lenorahaston | Jan 10, 2022
In reply to @colleenyoung "Welcome Lenora, I'm so glad that you posted about your NETs story after following the discussions..." + (show)
@colleenyoung

Welcome Lenora, I'm so glad that you posted about your NETs story after following the discussions for a bit. @tomewilson @gulzar @megansims also have experience with octreotide. Are you tolerating it well?

@tatteesmom3, did you meet with the surgeon this week? How did it go?

Jump to this post

Hi Colleen, Thanks for your response to my post. Thus far my response to the Octreotide has been mostly positive. I self-administered the short acting form for three wks right after the liver biopsy on 9/21/21 confirmed carcinoid cancer. It allowed me to eat without all the food drama- -nausea, vomiting, retching, gnawing epigastric pain and diarrhea. Now, I go for monthly shots and received the 3rd one on 12/29/21. The shots have caused painful local reactions resulting in lumps at the site. Ice packs immediately after have been helpful. For the past two wks I have experienced troublesome constipation. The plan for managing this includes: more veggies, stool softeners, prunes, senna teas, lots of water. Needed Miralax and Fleets oil enema to resolve most recent issue. Other than this, I tolerate it very well. Perhaps this info may help someone else.
Lenora

REPLY
1 reply
lenorahaston | @lenorahaston | Jan 10, 2022
In reply to @jhilbish "Hi Lenora, my husband has been diagnosed with Neuroendocrine cancer and we knew nothing about it?..." + (show)
@jhilbish

Hi Lenora, my husband has been diagnosed with Neuroendocrine cancer and we knew nothing about it? He has a spot on the tail of his pancreas and is many lesions on his liver, also the lymph nodes are involved in his stomach. He also has some bulged disc's in his back which is where the liver lesions were discovered. We sent him for an mRI for his back. He has had 7 back surgeries, he is ex-military. He is being treated with Sandostatin once a month. His pain levels are out of control? Now it seems to be going down his hip and leg? I don't know if it from the back or the cancer? His pain is worse than it was with back surgeries? I am speaking to his Dr. on zoom chat Tues. he had a Copper? PET scan? Maybe I do not know clinical terms but that is what we were told. We are going to Moffitt in Tampa, does anyone have any advice?

Jump to this post

Hi, thanks for your reply to my post. So sorry to hear that your husband's
pain is so severe. Perhaps the doctors can come up with a more effective treatment plan for pain control. It sounds as if he went to hospital for the back problem and they discovered NETs. This seems to be a common occurrence. When you speak with the doctor tomorrow, there are some things you can ask about. Find out if they know the primary site for the NETs, the liver or the pancreas. Did he have a Gallium 68 pet scan which is the best to find where NETs are and how many? Is your doctor someone who specializes in NETs? Are they planning other treatments besides the Sandostatin? Best of luck. Hope you get the information you need to go forward.
Lenora

REPLY
1 reply
rodelba | @rodelba | Jan 10, 2022
In reply to @jhilbish "Hi Lenora, my husband has been diagnosed with Neuroendocrine cancer and we knew nothing about it?..." + (show)
@jhilbish

Hi Lenora, my husband has been diagnosed with Neuroendocrine cancer and we knew nothing about it? He has a spot on the tail of his pancreas and is many lesions on his liver, also the lymph nodes are involved in his stomach. He also has some bulged disc's in his back which is where the liver lesions were discovered. We sent him for an mRI for his back. He has had 7 back surgeries, he is ex-military. He is being treated with Sandostatin once a month. His pain levels are out of control? Now it seems to be going down his hip and leg? I don't know if it from the back or the cancer? His pain is worse than it was with back surgeries? I am speaking to his Dr. on zoom chat Tues. he had a Copper? PET scan? Maybe I do not know clinical terms but that is what we were told. We are going to Moffitt in Tampa, does anyone have any advice?

Jump to this post

Sorry to hear that, you are going to a good place for medical care, does he has his thyroid checked?, I have that type of cancer and sometimes with medications the tumors get smaller, good luck!

REPLY
jhilbish | @jhilbish | Jan 9, 2022
In reply to @lenorahaston "Hello, My name is Lenora and this is my first time commenting on the NETs website...." + (show)
@lenorahaston

Hello, My name is Lenora and this is my first time commenting on the NETs website. I have been reading the comments which have been most informative. I was diagnosed in September 2021 with Stage four NETs with metastasis to the liver, bones, lymph nodes and pleura. I had a liver biopsy in Sept. which showed grade 2 (closer to 1) cells, well differentiated. It has taken several months and tests to get to this point. This has been the most difficult part for me. A mesenteric node was found on an MRI which was done in 2019 and the recommendation was to watch and wait. In the interim I was being treated for GERD, H.Pylori infection and gastritis.

The treatment with PPIs, antibiotics, antacids helped initially, but my symptoms persisted. The pandemic was also a factor in a delayed diagnosis. I believe in self-advocacy and insisted that something else was wrong with me. I suspected that I had cancer somewhere. It wasn't until the results of the 24hr urine were reported that my GI specialist suspected Carcinoid Tumors which now showed up in an enterography. I guess better late than never!

The timeframe from diagnosis to treatment has been relatively short. For that I am grateful. I am being followed at Fox Chase Cancer Center in Phila. by someone who specializes in these cancers. I am receiving first line treatment with Octreotide which I self-administered for three wks and now get once a month in long acting form. I will have a CT scan in February 2022 to see how things are progressing. My fear is that there will be little or no positive change only because my symptoms persist and are very episodic.
I would be grateful to speak with someone who may have had a similar experience.
.

Jump to this post

Hi Lenora, my husband has been diagnosed with Neuroendocrine cancer and we knew nothing about it? He has a spot on the tail of his pancreas and is many lesions on his liver, also the lymph nodes are involved in his stomach. He also has some bulged disc's in his back which is where the liver lesions were discovered. We sent him for an mRI for his back. He has had 7 back surgeries, he is ex-military. He is being treated with Sandostatin once a month. His pain levels are out of control? Now it seems to be going down his hip and leg? I don't know if it from the back or the cancer? His pain is worse than it was with back surgeries? I am speaking to his Dr. on zoom chat Tues. he had a Copper? PET scan? Maybe I do not know clinical terms but that is what we were told. We are going to Moffitt in Tampa, does anyone have any advice?

REPLY
2 replies
Tom Wilson | @tomewilson | Jan 7, 2022
In reply to @colleenyoung "Welcome Lenora, I'm so glad that you posted about your NETs story after following the discussions..." + (show)
@colleenyoung

Welcome Lenora, I'm so glad that you posted about your NETs story after following the discussions for a bit. @tomewilson @gulzar @megansims also have experience with octreotide. Are you tolerating it well?

@tatteesmom3, did you meet with the surgeon this week? How did it go?

Jump to this post

Hi Lenora, I am the leader of The Wisconsin Neuroendocrine Cancer Connection, a group of 163 and growing people who have Neuroendocrine Cancer and live in Wisconsin. My wife was DX with NETs in April 2015 and has been seen at Mayo Rochester by Dr. Halfdanarson who is a NETs specialist. She is a midgut, stage 4, mets to the liver with a less than 2% mitotic rate. She has been receiving Octreotide injections monthly for a few years now. This followed surgeries at Mayo in Oct 2015 and Dec 2016. She is also on Everolimus daily (a pill) and Xermelo 2 times daily (pill). The Everolimus is to control growth of the liver tumors and the Xermelo is to reduce circulating serotonin which is believed to be effecting her tricuspid valve resulting in Carcinoid Heart Disease (CHD). If I may ask what you 5HIAA results were? It is important to have an echo of the heart every year or two to check for CHD. Also, monitoring systems or having a simple blood test first (Pro BNP) is recommended. Please feel free to ask questions. I'm happy to speak by phone as well. Another resource I recommend is NCAN.org - it is the largest patient directed resource for NETs globally.

REPLY
2 replies
Moderator
Colleen Young, Connect Director | @colleenyoung | Jan 6, 2022
In reply to @lenorahaston "Hello, My name is Lenora and this is my first time commenting on the NETs website...." + (show)
@lenorahaston

Hello, My name is Lenora and this is my first time commenting on the NETs website. I have been reading the comments which have been most informative. I was diagnosed in September 2021 with Stage four NETs with metastasis to the liver, bones, lymph nodes and pleura. I had a liver biopsy in Sept. which showed grade 2 (closer to 1) cells, well differentiated. It has taken several months and tests to get to this point. This has been the most difficult part for me. A mesenteric node was found on an MRI which was done in 2019 and the recommendation was to watch and wait. In the interim I was being treated for GERD, H.Pylori infection and gastritis.

The treatment with PPIs, antibiotics, antacids helped initially, but my symptoms persisted. The pandemic was also a factor in a delayed diagnosis. I believe in self-advocacy and insisted that something else was wrong with me. I suspected that I had cancer somewhere. It wasn't until the results of the 24hr urine were reported that my GI specialist suspected Carcinoid Tumors which now showed up in an enterography. I guess better late than never!

The timeframe from diagnosis to treatment has been relatively short. For that I am grateful. I am being followed at Fox Chase Cancer Center in Phila. by someone who specializes in these cancers. I am receiving first line treatment with Octreotide which I self-administered for three wks and now get once a month in long acting form. I will have a CT scan in February 2022 to see how things are progressing. My fear is that there will be little or no positive change only because my symptoms persist and are very episodic.
I would be grateful to speak with someone who may have had a similar experience.
.

Jump to this post

Welcome Lenora, I'm so glad that you posted about your NETs story after following the discussions for a bit. @tomewilson @gulzar @megansims also have experience with octreotide. Are you tolerating it well?

@tatteesmom3, did you meet with the surgeon this week? How did it go?

REPLY
2 replies
lenorahaston | @lenorahaston | Jan 6, 2022

Hello, My name is Lenora and this is my first time commenting on the NETs website. I have been reading the comments which have been most informative. I was diagnosed in September 2021 with Stage four NETs with metastasis to the liver, bones, lymph nodes and pleura. I had a liver biopsy in Sept. which showed grade 2 (closer to 1) cells, well differentiated. It has taken several months and tests to get to this point. This has been the most difficult part for me. A mesenteric node was found on an MRI which was done in 2019 and the recommendation was to watch and wait. In the interim I was being treated for GERD, H.Pylori infection and gastritis.

The treatment with PPIs, antibiotics, antacids helped initially, but my symptoms persisted. The pandemic was also a factor in a delayed diagnosis. I believe in self-advocacy and insisted that something else was wrong with me. I suspected that I had cancer somewhere. It wasn't until the results of the 24hr urine were reported that my GI specialist suspected Carcinoid Tumors which now showed up in an enterography. I guess better late than never!

The timeframe from diagnosis to treatment has been relatively short. For that I am grateful. I am being followed at Fox Chase Cancer Center in Phila. by someone who specializes in these cancers. I am receiving first line treatment with Octreotide which I self-administered for three wks and now get once a month in long acting form. I will have a CT scan in February 2022 to see how things are progressing. My fear is that there will be little or no positive change only because my symptoms persist and are very episodic.
I would be grateful to speak with someone who may have had a similar experience.
.

REPLY
3 replies
Michelle Walsh | @michellewalsh | Jan 5, 2022
In reply to @hopeful33250 "Hello @kate12345 and @netpatient Just wanted to correct the post about the support group meeting on..." + (show)
@hopeful33250

Hello @kate12345 and @netpatient

Just wanted to correct the post about the support group meeting on Thursday. The speaker for Genetic Testing was not available, so the topic will be different. I hope that you will be able to attend.

Jump to this post

Dr. Starr will be providing an introduction to Genetic Testing this Thursday. The speaker from Clinical Genomics will present at our March meeting.

REPLY
netpatient | @netpatient | Jan 4, 2022
In reply to @hopeful33250 "Hello @kate12345 and @netpatient Just wanted to correct the post about the support group meeting on..." + (show)
@hopeful33250

Hello @kate12345 and @netpatient

Just wanted to correct the post about the support group meeting on Thursday. The speaker for Genetic Testing was not available, so the topic will be different. I hope that you will be able to attend.

Jump to this post

I will try very not to miss it.

REPLY
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jan 4, 2022
In reply to @amd12 "Doctor recommended another test before making the surgery decision. A Netscan. We'll see what that indicates..." + (show)
@amd12

Doctor recommended another test before making the surgery decision. A Netscan. We'll see what that indicates about the state of the rest of the lung tissue before deciding what surgery makes sense. Has anyone any experience with DIPNECH? That's on the list of possibilities.

Jump to this post

Hello @amd12

I was thinking about you and wondering if you have had the Netscan yet. I hope you are doing well and have the needed information to make an informed decision about surgery.

Will you post an update at your convenience?

REPLY
View MoreView Less
Please sign in or register to post a reply.