1. < Neuroendocrine Tumors (NETs)

Recurrence in Liver after Whipple

Posted by pete1962 @pete1962, Feb 19, 2023

I had a Whipple procedure in March 2019 with no traces of NEC left behind.
In Feb 2023 my scan confirmed recurrence in Liver, largest tumor about 2.5cm.
Did anyone have a successful treatment of a similar case? What did help you? I have an oncologist appointment scheduled for Feb 27 to discuss treatment options and would really appreciate any input so that I am better prepared.
Thanks, Pete

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margaret12 | @margaret12 | Mar 24, 2023
In reply to @ahtaylor "Fortunately, no fatigue. Hypoglycemia worsened but that could also be tumor growth in the pancreas. They..." + (show)
@ahtaylor

Fortunately, no fatigue. Hypoglycemia worsened but that could also be tumor growth in the pancreas. They have not discussed biopsy due to the indeterminate nature of the lesions on imaging as well as the invasiveness of a liver biopsy. The test I am having in April is a Calcium Stimulation test. The calcium gluconate will stimulate insulinomas to produce insulin. They will perform the stimulation across both the liver and the pancreas. If there is an increase in insulin levels, the area stimulated is positive for a tumor. The pancreatic tumors are not clearly visible on imaging so this test is how they know I have additional tumors in the pancreas. They will do the same to determine if the lesions in the liver are functional insulinomas. Hope this make sense. . .
They have done the test twice before and so far the liver has remained negative for tumors. It has been a couple of years since the last test. There has been an increase in the frequency and severity of hypoglycemia episodes as well as some changes in the imaging - thus the reason for the repeat test coming up.

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Very helpful, zi appreciate it. I feel hypoglycemic too but my fasting insulin is fine No one wants to do stimulation test, only 2hr glucose was done. Can I ask, do You feel any symptoms about 30min-1hr after eating? I had immense headache from the sugar they provide for 2hr glucose test for a day and I don’t get headaches. I feel worst when eating when not eating.
Thank You,

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1 reply
ahtaylor | @ahtaylor | Mar 24, 2023
In reply to @margaret12 "Very helpful, zi appreciate it. I feel hypoglycemic too but my fasting insulin is fine No..." + (show)
@margaret12

Very helpful, zi appreciate it. I feel hypoglycemic too but my fasting insulin is fine No one wants to do stimulation test, only 2hr glucose was done. Can I ask, do You feel any symptoms about 30min-1hr after eating? I had immense headache from the sugar they provide for 2hr glucose test for a day and I don’t get headaches. I feel worst when eating when not eating.
Thank You,

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Your symptoms sound very familiar! My hypoglycemia episodes are more frequently after meals than fasting. I have done more than one 72 hour fast. They don’t always result in hypoglycemia. My presentation actually made diagnosis more difficult as most insulinomas present with fasting hypoglycemia and mine presented as after meals. Do you have a glucose monitor to check when you don’t feel well? When I drop after meals it is 30-45 minutes after I eat. I recommend tracking your symptoms and glucose. Please continue to ask questions. Happy to help. 😊

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2 replies
margaret12 | @margaret12 | Mar 24, 2023
In reply to @ahtaylor "Your symptoms sound very familiar! My hypoglycemia episodes are more frequently after meals than fasting. I..." + (show)
@ahtaylor

Your symptoms sound very familiar! My hypoglycemia episodes are more frequently after meals than fasting. I have done more than one 72 hour fast. They don’t always result in hypoglycemia. My presentation actually made diagnosis more difficult as most insulinomas present with fasting hypoglycemia and mine presented as after meals. Do you have a glucose monitor to check when you don’t feel well? When I drop after meals it is 30-45 minutes after I eat. I recommend tracking your symptoms and glucose. Please continue to ask questions. Happy to help. 😊

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That’s next on my list as the doctors don’t believe in my symptoms and yes they sound very familiar. I tried to do 24-36hrs fast and track my ketones. I felt relatively good when fasting, but it changed when I ate after. I was in full ketosis at 36hr. I also fell asleep once I ate after 36hrs which I never do and I was in complete exhaustion. So to convert from ketosis to glucose my body had hard time handling. I also have occasional albumin, ALK phosphate changes, minimal but showing

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ahtaylor | @ahtaylor | Mar 24, 2023

Keep pressing on! Track your glucose relative to your symptoms. Keep records and take with you to your providers. Don’t be afraid to ask for a second opinion. Difficult, I know, but you are your best advocate!

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margaret12 | @margaret12 | Mar 24, 2023
In reply to @ahtaylor "Your symptoms sound very familiar! My hypoglycemia episodes are more frequently after meals than fasting. I..." + (show)
@ahtaylor

Your symptoms sound very familiar! My hypoglycemia episodes are more frequently after meals than fasting. I have done more than one 72 hour fast. They don’t always result in hypoglycemia. My presentation actually made diagnosis more difficult as most insulinomas present with fasting hypoglycemia and mine presented as after meals. Do you have a glucose monitor to check when you don’t feel well? When I drop after meals it is 30-45 minutes after I eat. I recommend tracking your symptoms and glucose. Please continue to ask questions. Happy to help. 😊

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Where is your primary and did You have Gallium68 scan?

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1 reply
ahtaylor | @ahtaylor | Mar 24, 2023
In reply to @margaret12 "Where is your primary and did You have Gallium68 scan?" + (show)
@margaret12

Where is your primary and did You have Gallium68 scan?

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My primary tumor is insulinoma in pancreas. I have done a dotatate PET with inconclusive results. I have not ever done Gallium68.

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1 reply
margaret12 | @margaret12 | Mar 24, 2023
In reply to @ahtaylor "My primary tumor is insulinoma in pancreas. I have done a dotatate PET with inconclusive results...." + (show)
@ahtaylor

My primary tumor is insulinoma in pancreas. I have done a dotatate PET with inconclusive results. I have not ever done Gallium68.

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Sorry to hear, but understand why You try to insure if not residual. Did they do Copper64 DOTATE if it was not Gallium68.

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ahtaylor | @ahtaylor | Mar 25, 2023

My apologies - it was Gallium 68 - had to go back and look - last one was done 2021 and prior to that 2017.

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kim1965 | @kim1965 | Mar 26, 2023

@pete1962
Sorry I didn’t see your post until just recently. My wife had primary NET on pancreas and too many to count on liver. After 9 cycles of Cap/Temp chemo pills and monthly Lanreotide injections, she had surgery on 3/1, and is doing well so far. The chemo and injections reduced tumors in both pancreas and liver by 80% allowing for surgery on both areas. Some remain in liver, but are molecular only for now. Our cancer care team is considering taking out right lobe of liver where all the molecular ones are left. Just a quick rundown of her case, if you have further questions please let us know.

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pete1962 | @pete1962 | Apr 4, 2023

@kim1965
Hi kim1965

A lot has gone on since my last post. My tumor is stage 2, well differentiated with the largest one a size of 2.5cm. Apparently there are too many liver lesions to operate. My care team has recommended to use Lanreotide injections with regular scans. I had the first injection 2 weeks ago with no side effects. They do not recommend PRRT or Immuno for now due to side effects and recommend to wait and monitor effect of Lanreotide. What was the reason why your wife's team decided to apply a combined treatment?

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