Diagnosed with Stage 4 pancreatic neuroendocrine metastasized to liver

Ask your doctors about adding Temozolimide to your regimen. It is an oral chemotherapy that is combined with the Lanreotide/Sandostatin injections and is usually well tolerated. Take solace, I have stage 4 advanced metastatic Paraganglioma, multiple surgeries, radiation and still the oncologist feels I can live a long life. Stay on top of the dr. appointments and subsequent treatment decisions and know that neuroendocrine cancers are normally slow progressing. Also talk to the dr. about having genetic testing is it can assist future treatment decisions.
God bless you☀️☀️☀️

Yes, I did have genetic screening not long after the primary tumor was resected in late 2016. The endocrinologist thought it would be a good idea so she referred me to a genetic counselor at City of Hope. It was discovered I had a mutation in sdha which at the time they felt was good. They were hoping not to find anything in sdhb which is widely considered to be a more aggressive subtype of Pheochromocytoma/ Paraganglioma. However they are recently finding in other countries where more research is being done on these diseases that sdha can behave similarly to sdhb in that it can metastasize early and exhibit suboptimal response to conventional treatment strategies. I don't believe the testing has greatly influenced the dr.s decisions as much as the serial imaging that is performed but I do believe it is something they are aware of and may impact any changes in the regimen I am receiving going forward.
Hope that helps

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

That’s great news! Kim has her first recheck after surgery June 29th. We hope to have the same success as you got going. All the blood work and cancer markers have been good. She has gotten a insulin pump to help her manage the diabetes. Hopefully goods at end of month. 🙏🙏🙏

just wondering how your wife is doing with the CAPTEM. My husband just started his course of CAPTEM this past Saturday.

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

Good luck today kim. Waiting for the results can be quite nerve wracking.