1. < Neuroendocrine Tumors (NETs)

Lost with no confirmation of NETs origin: Innumerable liver lesions

Posted by k8lyn23 @k8lyn23, Feb 13, 2023

Hi, my dad-active 63 year old kept complaining of boating and dull stomach pain. I am a nurse but am not very familiar with oncology specifics. CT and MRI scans later- mass-like lesion near pancreatic head also thickening in duodenal bulb(biopsied) and multiple lesions in liver (also biopsied)
Suspicious of stage 4 pancreatic cancer.
Fast forward to pathology report- only thing I understood was the liver biopsy saying “metastatic high grade neuroendocrine cell carcinoma” -I know this is bad.
Now this is the kicker- it also says “from either the GI tract or pancreas”
We have the first meeting with the oncologist in two days to talk about everything. But in the mean time to keep myself busy I am trying to research and get educated in order to ask better questions.
I’m lost with the fact that they can’t confirm or deny the origin from the pathology? And with the origin being unconfirmed now does that affect treatment options?
Any similar experiences here? Thank you!

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emma0444 | @emma0444 | Mar 29, 2023
In reply to @kim1965 "@stevestenberg31 My wife@Kim1965, in April 22 diagnosed with mass on pancreas and also too many lesions..." + (show)
@kim1965

@stevestenberg31
My wife@Kim1965, in April 22 diagnosed with mass on pancreas and also too many lesions on liver to count. The short story is after 9 months of Chemo (pills), Lanreotide, she had 80% reduction in both and had surgery to greatly reduce the cancer. Have faith in your cancer team to come up with a plan to beat NETs.

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@kim1965
That is great to hear about how well treatment has gone for your wife. My dad has just been diagnosed with a very similar case originating in pancreas and too many lesions on liver to count. I am curious what your wife's ki-67 score and grade was if you are willing to share?

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2 replies
Moderator
Colleen Young, Connect Director | @colleenyoung | Mar 30, 2023
In reply to @tomrennie "I met with my oncologist. The big tumors on my pancreas are about half the size..." + (show)
@tomrennie

I met with my oncologist. The big tumors on my pancreas are about half the size of what they were when I started CAPTEM 7 months ago. The over 200 lesions on my liver have stabilized or shrunk. Yay! I start another CAPTEM chemo cycle tomorrow. I get so excited to start chemo again cause it is working. I will suck up two weeks of feeling like crap if it is working.

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@tomrennie, that is exciting that the tumors are responding to chemo with capecitabine and temozolomide (CAPTEM). How often do you have treatments? All the best today!

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1 reply
lastround | @lastround | Mar 30, 2023
In reply to @k8lyn23 "@lastround your diagnosis seems so similar to my dads story in the sense of areas affected..." + (show)
@k8lyn23

@lastround your diagnosis seems so similar to my dads story in the sense of areas affected and different grades along with the increased amount of liver masses- do you experience any pain? Pain management has been the ultimate struggle. Fentanyl patch along with dilaudid pills are hardly keeping him at bay. He’s naturally a very active guy so I’m sure this is a struggle of itself with not being able to do the things he wants to do. With the pain on the side of his liver along with always feeling bloated and I’m sure related to the tumor burden of his small intestine. Do you experience any pain and what has usually helped you? He’s on cycle 3 so far and we were hoping chemo would help with pain in hopes of shrinking the big guys that were causing the pain, but might not be the case.

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I haven’t had any problems with pain. My biggest problem is with Neuropathy in my hands and feet. After 6 months of chemo [Folfox, 5FU] I am weak and the Neuropathy in my feet makes me unstable on my feet. I’ve fallen a couple times and can’t get up afterwards because I’m so weak.
I am starting to be able to eat again. Food was metallic tasting and couldn’t eat but taste is coming back.
I’m guessing the pain your father has may be from his intestinal issues. I was told last August by my 2nd doctor
“Don’t worry, Death from Liver failure is painless” that was my last appointment with that s.o.b.
If you don’t feel comfortable or the treatment isn’t working I can’t stress enough, get a second or third opinion. From what I know about Fentanyl it can put down an elephant, so if that isn’t working ask what else could be causing the pain. Could it be gas? That can be extremely painful. Chemo can give you gas, I know first hand, but I’ve been able to pass it thankfully.
The chemo did shrink my tumors [ 10 centimeters to 4] so tell him to keep fighting.
Best of luck

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Turkey | @tomrennie | Mar 30, 2023
In reply to @colleenyoung "@tomrennie, that is exciting that the tumors are responding to chemo with capecitabine and temozolomide (CAPTEM)...." + (show)
@colleenyoung

@tomrennie, that is exciting that the tumors are responding to chemo with capecitabine and temozolomide (CAPTEM). How often do you have treatments? All the best today!

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I take 3 caps in the morning and 2 at night on days 1 - 14. They are 500mg each. I take 2 tems at night on days 10 - 14. They are 140mg each. They used to be stronger but the doctor lowered the dosage due to side effects.

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kim1965 | @kim1965 | Mar 31, 2023
In reply to @emma0444 "@kim1965 That is great to hear about how well treatment has gone for your wife. My..." + (show)
@emma0444

@kim1965
That is great to hear about how well treatment has gone for your wife. My dad has just been diagnosed with a very similar case originating in pancreas and too many lesions on liver to count. I am curious what your wife's ki-67 score and grade was if you are willing to share?

Jump to this post

@emma044
I’m sorry to hear about your Dad’s diagnosis, but he can and will beat this. After 9mo the of Cap/Tem, Lanreotide, and surgery we are ready for the next stage in my wife beating this. Regarding your test you asked about, we just had a meeting just yesterday with our cancer team and I heard that number. All I remember it is low for now, but will be watched very closely every 3 months, along with CT’s, MRI’s going forward. More to follow, please let us know how we can share progress on your dad’s case, as we all are here to help each other beat NET.

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kim1965 | @kim1965 | Mar 31, 2023
In reply to @emma0444 "@kim1965 That is great to hear about how well treatment has gone for your wife. My..." + (show)
@emma0444

@kim1965
That is great to hear about how well treatment has gone for your wife. My dad has just been diagnosed with a very similar case originating in pancreas and too many lesions on liver to count. I am curious what your wife's ki-67 score and grade was if you are willing to share?

Jump to this post

@emma0444
I have copied our pathology report below for you. This is after surgery, after 9 months chemo, and Lanreotide (still doing).
performed at WDL. The neuroendocrine tumor cells are positive for synaptophysin, chromogranin, and pancytokeratin AE1/AE3, A ki-67 index is approximately 1% and there is negligible mitotic activity, supporting the impression of WHO grade 1 disease.

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sophiarose | @sophiarose | Mar 31, 2023

I have NET metastasis liver cancer
I have been told by 3 drs that they don’t know where the primary is and that it is possible it will never be found
They say most likely in my intestines or stomach because of my blood tests
I did 2 Gallium PET scans and the area that lite up was my liver
I was put on Lanreotide but the side effects were really bad
Then on Ocreotide but this month I will not be getting the injection because it appears I am having side effects
Good luck to your husband

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