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.

rose4jim2417 | @rose4jim2417 | Jun 27, 2023

Thank you so much for your concern. We’re glad your doctors have given you a good prognosis. Jim’s CAP/TEM treatment does include capecitabine and temozolomide along with the lanreotide injections. Take care.

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jun 28, 2023
In reply to @gsm13161 "Ask your doctors about adding Temozolimide to your regimen. It is an oral chemotherapy that is..." + (show)
@gsm13161

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☀️☀️☀️

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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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1 reply
gsm13161 | @gsm13161 | Jun 28, 2023

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

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1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jun 28, 2023
In reply to @gsm13161 "Yes, I did have genetic screening not long after the primary tumor was resected in late..." + (show)
@gsm13161

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

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I appreciate that information, @gsm13161. That is very interesting. I've learned so much from this forum and this is a new piece of information.

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bnjncrew | @bnjncrew | Jun 29, 2023
In reply to @tomatlanta "First time post here. Briefly, my wife started losing weight and feeling fatigued in the first..." + (show)
@tomatlanta

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

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

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1 reply
Turkey | @tomrennie | Jun 29, 2023
In reply to @kim1965 "That’s great news! Kim has her first recheck after surgery June 29th. We hope to have..." + (show)
@kim1965

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. 🙏🙏🙏

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

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1 reply
tomatlanta | @tomatlanta | Jun 29, 2023
In reply to @bnjncrew "just wondering how your wife is doing with the CAPTEM. My husband just started his course..." + (show)
@bnjncrew

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

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Thanks for asking. She completed her first course and is about to start round 2. Despite some fatigue, gas/bloating, and a need to get calories to maintain weight she is doing quite well. Nausea has not been a problem nor have some of the other reported side effects. She has been able to maintain her exercise schedule and some of her work.

I wish you and your husband the best in your treatment.

REPLY
makebadaniels73 | @makebadaniels73 | Jun 29, 2023
In reply to @tomatlanta "First time post here. Briefly, my wife started losing weight and feeling fatigued in the first..." + (show)
@tomatlanta

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

Jump to this post

@tomatlanta I'm praying for healing and thank u you so much for this information for it is very helpful.

REPLY
kim1965 | @kim1965 | Jun 29, 2023
In reply to @tomrennie "Good luck today kim. Waiting for the results can be quite nerve wracking." + (show)
@tomrennie

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

Jump to this post

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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1 reply
sadie14 | @sadie14 | Jun 29, 2023

Have they suggested prrt therapy?

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