Diagnosed with Stage 4 pancreatic neuroendocrine metastasized to liver

Hang in there @ahilker! I had similar situation, no primary site discovered during surgery, pNET debulked, but with liver metastases. What kind of infusion do you have?
Right now I am on monthly injections with Lanreotide to slow the growths. I generally tolerate them well, only 3-4 days after injections are bad. I take Zofran for nausea, and on these days eat crackers with swiss cheese. Try different foods to see which you can tolerate and eat often small portions! Stay hydrated, too! I drink half a glass of tart cherry juice ( no sugar added) a day. Some days it feels good, some days I can hardly take it.. Follow the signs your body gives you! Prayers!🙏💜💜

First time post here. Briefly, my wife started losing weight and feeling fatigued in the first part of the year. As her symptoms increased she saw her PCP. Her labs came back with alarming liver function results. The PCP ordered an abdominal CT which showed a very large pancreatic mass and liver involvement. Her health was rapidly failing with greater fatigue, loss of appetite, and jaundice. After some delay, she was referred to a surgical oncologist who next day arranged for a gastroenterologist to do an ERCP where there would both be tissue biopsies to identify, grade and stage the tumor as well as to insert a metal stent into the bile duct. Opening the bile duct resolved all of her symptoms. Her liver function is mostly restored, her appetite returned and she is gaining weight. I have no idea whether your bile duct is functioning but I would think that an appropriate question for your gastroenterologist and oncologist. The biopsy found a grade 2, very large pancreatic neuroendocrine tumor. A Pet dotatate scan showed both liver and bone tumor cells as well.

As my wife's tumor is inoperable the next step is to start systemic therapy. After considering Lanreotide she and her oncologist have chosen Captem in order to shrink the tumor. She starts her first course next week.

Wishing you all good thoughts for your treatment

Thank you for sharing and your wife is in my prayers. I was thinking all my symptoms were in my head since my oncologist continues to tell me the symptoms I have are unrelated to the cancer. Would you please keep me in the loop on the CapTem. I'm currently on Lanreotide since last October with no change (tumors have not spread/tumors have not shrunk). Thank you again for the reply.

Thank you @pavlina60. I started my first lanreotide infusion in October. I had 1 set of new scans in February where the oncologist stated that there was no change (tumors have not shrunk but they have not spread either). My next set of scans will be performed next month, fingers crossed for better results. I just hate that I used to be full of energy and loved getting out of bed and doing all the day to day necessities. But since the gallbladder surgery in February, I no longer have any energy, I'm cold all the time despite nothing being wrong with my thyroid, I get more frequent headaches and the list goes on. I started thinking the symptoms were made up and I'm just feeling sorry for myself (which 15-20% is probably really feeling sorry for myself). Thank you again and sending good vibes your way as well!

OMG! This sounds like I wrote it!
Congratulations on the good scans! Mine is coming up in June.
But, I feel exactly the same! I am 62, but up until November I loved going to work, had a very satisfying scientifically job, with some physical demands. After surgery I could hardly wake up in the morning! And feel cold all the time! Also, not sure if it was a side effect fron the Lan injections but my hair started falling off and I have insomnia (3-4 nights out of the week I cannot go to sleep before 2:30 am, and I do feel tiredmost of the time..
Keep the fight! God bless you!💜🦓

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.

Thank you, kim1965! So far I am only on Lan injections. I have a very good oncologist, but am thinking after the scans in June to ask for a referral to Roswell Park in Buffalo, NY, where there are NET specialists and ask if I can be put on CAP/TEM or why not.

Hello, my husband was diagnosed with stage four metastatic PNET cancer last October. He has a large mass on his pancreas and 26 spots on his liver along with spots on his spine and some lymph nodes. He also began monthly lanreotide injections in November along with oral chemo: capecitabine 500 mg. along with temozolomide 100 mg. He has experienced 40% shrinkage after 6 months of treatment. He feels like he did pre symptoms. We we wish you luck in treating your cancer.

If your oncologist is not a NET Specialist, get one! That is the number #1 suggestion you will here from everyone on this site. NET is very rare and a lot of oncologists even very good ones have not seen NET or enough cases. Have your very good oncologist refer you to a NET specialist, that is his job to get you the very best care available. Let’s us all know how we may help you further. You got this!

Me too! The surgery is exhausting and so are the lanreotide treatments. I worked a job I loved for a year after surgery, but ended up retiring a year ago, at age 63. I felt that the brain fog and frequent restroom breaks made it too hard to do my job well. The stress is less now, which is good. I have similar symptoms - chills, fatigue, diarrhea and headache and dizziness. I did have hair loss, but that turned out to be thyroid, which has resolved with meds (synthroid.)
I also had insomnia and take trazodone.

The good news is that there are good days and I have gotten adjusted to my new constraints. I have goals after lanreotide that might be "take a shower" or walk one block. These goals halp me be more realistic about the new me, because I won't be off on a ten mile hike anymore. On a "good" day, maybe, but I cannot predict.

Don't be too hard on yourself, giving ourselves grace goes a long way to improving our mental health.