1. < Neuroendocrine Tumors (NETs)

Diagnosed with Stage 4 pancreatic neuroendocrine metastasized to liver

Posted by ahilker @ahilker, May 24, 2023

Hi everyone. I am new to the group and wondered what kinds of symptoms others with Pnet go through. I was diagnosed just under a year ago and began the lanreotide infusion shot this past October. I went into my regular doctor last May for what I thought was a gall bladder infection. My doctor sent me in for a full abdomen CT and found a 3 cm mass on the tail of the pancreas. At the time my doctor told me we need to look at the mass first before looking into the gall bladder. After several PT scans and biopsies they can see small tumors covering my entire liver the largest being 1.1 cm. Since surgery was not an option, I started on the infusion. My nausea did not go away so I went back in to see about my gall bladder. Since then I feel 25 times worse. I’m exhausted all the time, very little appetite but no real weight loss, depression from having to rely on my family and pain around the pancreas and liver. I am grade 2 well functioning stage 4. Any suggestions would be greatly appreciated

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

sadie14 | @sadie14 | Jun 29, 2023
In reply to @kim1965 "My wife was diagnosed with NET with mass on tail of pancreas, and too many tumors..." + (show)
@kim1965

My wife was diagnosed with NET with mass on tail of pancreas, and too many tumors to count on liver. Our NET Specialist Multi-Disciplinary team started her on Lanreotide immediately along with CAP/TEM pills, and after 9 cycles (months), all her tumors on both pancreas and liver were reduced around 80%, and March 1st she finally had surgery and the Team removed remaining mass on pancreas, tail of pancreas, spleen, gall bladder, and debunked a majority of tumors on liver. She is doing ok, managing the diabetes is still a challenge, but the Team believes we have made this a mtn item going forward only maintaining the Lanreotide monthly injections. Listen to your team, each case is different and you will put this back to a mtn. Issue only long term hopefully. You got this. Let us know how we can help.

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Does your wife have carcinoid syndrome too? Her tumors and symptoms sounds similar to my husband's.
Trying to get the diarrhea under control is a real challenge too as well as itching.
He had 1st prrt therapy. Will see July what scans show. It sounds like lanreotide and cap/tem is working which is fabulous! It unfortunately these tumors don't get diagnosed early.

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pavlina60 | @pavlina60 | Jun 30, 2023
In reply to @kim1965 "Thanks! We got a CT scan earlier this week and met with our cancer team today...." + (show)
@kim1965

Thanks! We got a CT scan earlier this week and met with our cancer team today. It did show signs of some growth in the liver, not to worry, getting a MRI to confirm in 2 weeks, then the team will meet on the best course of action. Other than the challenges of the diabetes, all is going well. Whatever is growing will be addressed by the procedure which will continue this long path of keeping NET at bay. I’m wondering how everyone is doing that had their tail of pancreas removed? What challenges have you incurred and what has worked in dealing with this new normal in our life’s.

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Hello kim1965! Hope the drs choose the right treatment after seeing the results of the MRI!
I had my distal pancreatectomy ( removal of the tail and most of the body of the pancreas, spleen and gallbladder). I am doing well. My blood glucose is stable ( under 90 at fasting; A1C wa 7.1 before surgery, 2 mo after it was 5.4!). I learned to eat small amounts of food, nothing fried or spicy. I started taking Creon ( pancreatic enzymes to help digestion). Gall bladder was removed b/c lanreotide ( which I am on) produces stones and eventually had to be removed).
There is life after distal pancreatectomy :). Ask any questions you may have!
Good luck and we got this!🦓💜!

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zebraflower | @zebraflower | Jun 30, 2023
In reply to @pavlina60 "Thank you, Zebraflower! I feel exactly the same! Had a CT scan on the 5th. Only..." + (show)
@pavlina60

Thank you, Zebraflower! I feel exactly the same! Had a CT scan on the 5th. Only have the results from the chest scan - thank God nothing in there! Waiting for the results from abdomen/pelvis, hopefully will be good, too. I mentioned hairloss to my oncologist today, he says it is a side effect of Lan injections.
I am 62, worked a job I loved until December 2022 when this rollercoaster started. I am still.on medical leave but considering SocSecDisability. Glad to hear some similar stories 🦓💜💜

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Our situation is not too fun. The SS Disability application was not difficult. I suspect that anyone with Stage Four passes their test. Not a great place to be, but the stress reduction when I stopped working was positive.

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kim1965 | @kim1965 | Jul 1, 2023
In reply to @sadie14 "Have they suggested prrt therapy?" + (show)
@sadie14

Have they suggested prrt therapy?

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Not yet, it was discussed as a tool we will keep in the toolbox as the team likes to say. They are meeting July 18th to discuss next steps.

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2 replies
coachv | @coachv | Jul 1, 2023
In reply to @hopeful33250 "Hello @gsm13161, I see that you mentioned genetic testing and said that, "it can assist future..." + (show)
@hopeful33250

Hello @gsm13161,

I see that you mentioned genetic testing and said that, "it can assist future treatment decisions." Is genetic testing something that you have done?

As I have not heard about genetic testing being used for the treatment of NETs, I would be interested in knowing if the testing helped determine the treatment that you are now having. Please share as you are comfortable doing so.

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Teresa,
I have Carotid Paraganglioma and genetic testing was strongly recommended. Turns out I have an SDHB mutation. SDHB mutation, unlike other SDH mutations can be passed my mother and father. Not just father. We will be testing our boys as soon as we figure out how it is best to explain to them that there is a 50/50 chance I may have passed a 'cancer gene' on to them.

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jul 3, 2023
In reply to @kim1965 "Not yet, it was discussed as a tool we will keep in the toolbox as the..." + (show)
@kim1965

Not yet, it was discussed as a tool we will keep in the toolbox as the team likes to say. They are meeting July 18th to discuss next steps.

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Hello @kim1965,

I hope that you and your wife get a good treatment plan when the medical team meets on the 18th. There are so many new treatments available for NETs now that were not available when my NETs journey started 20 years ago.

How is Kim feeling?

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coachv | @coachv | Jul 3, 2023
In reply to @kim1965 "Not yet, it was discussed as a tool we will keep in the toolbox as the..." + (show)
@kim1965

Not yet, it was discussed as a tool we will keep in the toolbox as the team likes to say. They are meeting July 18th to discuss next steps.

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Best of luck to you! Stay strong. Even if you do have a mutation, we are not marked for death, we are marked for life !!!

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kim1965 | @kim1965 | Jul 3, 2023

We are strong! She has gone from stage 4 mass on pancreas and too numerous tumors to count, to knocking down to a mtn. type event with a great chance to live decades as our medical team says. When I know more on 18th I will share in the hope it will help someone else. We all got this!

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1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jul 4, 2023
In reply to @kim1965 "We are strong! She has gone from stage 4 mass on pancreas and too numerous tumors..." + (show)
@kim1965

We are strong! She has gone from stage 4 mass on pancreas and too numerous tumors to count, to knocking down to a mtn. type event with a great chance to live decades as our medical team says. When I know more on 18th I will share in the hope it will help someone else. We all got this!

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I so appreciate your encouraging posts, @kim1965! You and your wife are strong, but we all need encouragement. So please use us as you need to gain strength and momentum.

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1 reply
kim1965 | @kim1965 | Jul 4, 2023
In reply to @hopeful33250 "I so appreciate your encouraging posts, @kim1965! You and your wife are strong, but we all..." + (show)
@hopeful33250

I so appreciate your encouraging posts, @kim1965! You and your wife are strong, but we all need encouragement. So please use us as you need to gain strength and momentum.

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Actually you and the Mayo site have given us unquestionably great advice and support in all facets of this fight against NET. We are forever grateful to you and Mayo for helping us through this !

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