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!

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.

lastround | @lastround | Feb 15, 2023
In reply to @links "Hi My sugars dropped to 37 last July when I passed out in my car....found the..." + (show)
@links

Hi
My sugars dropped to 37 last July when I passed out in my car....found the Net in my pancreas
and lesions on my liver. I am being treated at Dana Farber..just had my 16th round of chemo..
so far thats the plan while it is working. Next scan in March.
The sugars are hard to manage,I wear a Dexcom to keep track of them so they dont get low.
I mix corn starch in my tea at night and eat an EXTEND BAR which has definitely helped me get'thru the night and no sugar issue.
Any questions please reply!!

Jump to this post

Hats off to you doing 16 rounds of chemo. I’ve had 12 and have to take a break, I’m so weak I can barely climb the stairs to go to bed at night. Starting a maintenance program March.
Have you been able to eat? I can’t eat anything the last few weeks. I could eat fish chowder and cereal for a while but that won’t go down now either. Matallic taste in my mouth makes it impossible for me to eat.
Hopefully taking a break from the chemo will help.

REPLY
2 replies
k8lyn23 | @k8lyn23 | Feb 15, 2023
In reply to @firepowr "I, too, have high grade (2/3) metastatic NETs—liver, pancreas, lungs, bone, adrenal gland, parotid gland. I..." + (show)
@firepowr

I, too, have high grade (2/3) metastatic NETs—liver, pancreas, lungs, bone, adrenal gland, parotid gland. I also have “innumerable” liver tumors (one radiologist estimated about 80), and unknown primary (guess is lung or pancreas).
I am at Mayo Rochester, with Thor Halfdanarson. Diagnosed Jan 2020. I was told my situation is inoperable and incurable, so stability is the goal.
At the beginning, I was not a good candidate for PRRT (not enough uptake of the tracer on PET DOTATATE scan). I started with two cycles of CapTem (pill form). It did not work at all for me and I had notable growth on CT scan within two months. I then had 10 rounds of FOLFIRINOX chemotherapy, followed by 50 rounds of FOLFIRI chemotherapy (we discontinued oxaliplatin due to worsening neuropathy). I tolerated chemo well—every two weeks for about 2 1/2 years until October 2022. Started to see growth again in the liver. They repeated the PET DOTATATE scan and my tumors had changed and I was now a good candidate for PRRT, which I started in December 2022, with octreotide injections with PRRT treatment (I do not have a mid cycle injection). I have had two PRRT cycles so far and fatigue is really my only side effect.
New treatments are coming out all the time. This type of cancer is highly unique and individual and morphs over time—treatments that once might not have worked may become a viable option later.
Things seemed very grim for me, too, at the beginning. Do not lose faith or hope. I know I might always be getting some kind of treatment, probably for the rest of my life, but I have two kids and I will take it all if it means I’m still here.
All the love, prayers, and hugs to you. Please reach out if I can help in any way.

Jump to this post

Just went to the first oncologist appointment. After my doctor discussed with the hospital tumor board the plan of attack is chemo every 21 days of etoposide and carboplatin. After three months there will be new scans done. NETs in liver and small intestine. Grade 3 at Ki of 60-70%
Due to the aggressiveness of the cells they wanted to start strong and hard with these chemo drugs. Brought up PRRT and he said possibly down the road once we have a handle on things and get “stable” should I fight back on that?
Any experience this this chemo regimen in particular?

REPLY
2 replies
links | @links | Feb 15, 2023
In reply to @lastround "Hats off to you doing 16 rounds of chemo. I’ve had 12 and have to take..." + (show)
@lastround

Hats off to you doing 16 rounds of chemo. I’ve had 12 and have to take a break, I’m so weak I can barely climb the stairs to go to bed at night. Starting a maintenance program March.
Have you been able to eat? I can’t eat anything the last few weeks. I could eat fish chowder and cereal for a while but that won’t go down now either. Matallic taste in my mouth makes it impossible for me to eat.
Hopefully taking a break from the chemo will help.

Jump to this post

Hi
I make protein shake with
Protein powder yogurt banana
Peanut butter milk sometimes add couple strawberries
Soups chicken soup with lots is noodles add chicken or chicken dumplings you can buy frozen
Cabbage soup with meat on it
Vegetable soup
My dr said salty and hot tasting helps your taste
Also French toast with cinnamon and maple syrup
Bagel with melted cheese
Spaghetti and sauce
Trust me I dont feel like eating but have to for the sugar counts
Hope that helps a bit

REPLY
kellysg | @kellysg | Feb 15, 2023
In reply to @pjsheridan2022 "I see that you had PRRT in 2020 and it’s been stable since. I will have..." + (show)
@pjsheridan2022

I see that you had PRRT in 2020 and it’s been stable since.
I will have my 4th PRRT treatment in 3 weeks. Wondering what grade tumors you have.
I’m hoping for a similar outcome.

Jump to this post

My cancer is Stage IV, but I can't find anything about the staging of my tumor...

Is yours Carcinoid as well, or something else?

Hope you are doing well with the PRRT! I only experienced fatigue, which got worse with each treatment, and hair thinning, but not drastic enough I had to do anything about it. I also noticed my appetite was crazy, I was hungry ALL the time!

I just found out this morning that Mayo Clinic approved me for a second opinion. I want to make sure I'm on the best treatment plan, and my oncologist suggested I check with Mayo.

REPLY
1 reply
lastround | @lastround | Feb 15, 2023
In reply to @k8lyn23 "Just went to the first oncologist appointment. After my doctor discussed with the hospital tumor board..." + (show)
@k8lyn23

Just went to the first oncologist appointment. After my doctor discussed with the hospital tumor board the plan of attack is chemo every 21 days of etoposide and carboplatin. After three months there will be new scans done. NETs in liver and small intestine. Grade 3 at Ki of 60-70%
Due to the aggressiveness of the cells they wanted to start strong and hard with these chemo drugs. Brought up PRRT and he said possibly down the road once we have a handle on things and get “stable” should I fight back on that?
Any experience this this chemo regimen in particular?

Jump to this post

I was put on Folfirinox chemo for 12 treatments every 2 weeks for 3 days. I would get one in the hospital and that take a bag of chemo home with a pump for 48 hours that I would remove at home. My tumors shrank quite a bit. My glucose is now stable.
Apparently this is similar to what you would receive if you had Colon cancer.
I’ve said to others, if your not comfortable get a second opinion from someone who is familiar with this type of NET cancer.
Don’t know where you are but go to a big well known hospital, not the local hospital. I’m on my 3rd hospital, Dana Farber in Boston. But there are many others.
But get someplace that is familiar with NET, hospital number 2 was treating me like I had regular pancreases cancer, and it didn’t work

REPLY
firepowr | @firepowr | Feb 15, 2023
In reply to @k8lyn23 "Just went to the first oncologist appointment. After my doctor discussed with the hospital tumor board..." + (show)
@k8lyn23

Just went to the first oncologist appointment. After my doctor discussed with the hospital tumor board the plan of attack is chemo every 21 days of etoposide and carboplatin. After three months there will be new scans done. NETs in liver and small intestine. Grade 3 at Ki of 60-70%
Due to the aggressiveness of the cells they wanted to start strong and hard with these chemo drugs. Brought up PRRT and he said possibly down the road once we have a handle on things and get “stable” should I fight back on that?
Any experience this this chemo regimen in particular?

Jump to this post

I do not have personal experience with those two chemo drugs. I am not an oncologist, but I can say my team also wanted to “go hard” at my cancer—thus, with IV chemo, in my case, every two weeks—due to aggressiveness. I also had a new CT scan every two months. PRRT is, as I understand it, one treatment every two months for four treatments (so, over 8 months), and I was told it’s not the best first option for aggressive cases, such as ours. My team also wanted to get it more “under control” and stable before moving to something like PRRT.
I’m so glad you have a plan set forth and I’m sending all the best thoughts and energy your way. Please continue to ask questions if you need!

REPLY
1 reply
kim1965 | @kim1965 | Feb 15, 2023
In reply to @lastround "Hats off to you doing 16 rounds of chemo. I’ve had 12 and have to take..." + (show)
@lastround

Hats off to you doing 16 rounds of chemo. I’ve had 12 and have to take a break, I’m so weak I can barely climb the stairs to go to bed at night. Starting a maintenance program March.
Have you been able to eat? I can’t eat anything the last few weeks. I could eat fish chowder and cereal for a while but that won’t go down now either. Matallic taste in my mouth makes it impossible for me to eat.
Hopefully taking a break from the chemo will help.

Jump to this post

@lastround
I saw that you were having trouble with eating most everything, my wife also with all the chemo (pills), nausea, etc., didn't have much of an appetite. She finally found a go-to that hopefully will help you to at least try. It's a simple one, but the ease of eating and different combos they have are Instant Oreda potatoes. Very easy to swallow, quite tasty she says, and the second item that help her was watermellon, as it help get back to regular bathroom visits without diareha or all clogged up from the chemo. Hope it helps you, let us know if it works?

REPLY
kim1965 | @kim1965 | Feb 15, 2023
In reply to @k8lyn23 "Start of a new journey: Pathology report of liver biopsy indicating metastatic high grade neuroendocrine cell..." + (show)
@k8lyn23

Start of a new journey: Pathology report of liver biopsy indicating metastatic high grade neuroendocrine cell carcinoma. MRI showing innumerable liver lesions.
Still unclear of the origin- GI tract verses pancreas (where masses also found.) First oncologist appointment since new results this week to discuss future/plan.
Any suggestions on what treatment I should look out for or ask about to prepare questions for? Stance on chemo and affects of it on the quality of life since prognosis seems grim.
Thank you!

Jump to this post

Obviously we are not doctors. I would ask about the option of if chemo is selected if there is a pill form available vs. intravenous. My wife has been on it for 9 cycles (months) and generally has been able to tolerate it I believe much better than what I heard from this forum and research. A side benefit we were not aware of, is you will not lose your hair. Not the most important factor obviously, but all things being equal, just something to share with you if ask to see if its advisable in your case.

REPLY
lindaldotson | @lindaldotson | Feb 16, 2023
In reply to @firepowr "I, too, have high grade (2/3) metastatic NETs—liver, pancreas, lungs, bone, adrenal gland, parotid gland. I..." + (show)
@firepowr

I, too, have high grade (2/3) metastatic NETs—liver, pancreas, lungs, bone, adrenal gland, parotid gland. I also have “innumerable” liver tumors (one radiologist estimated about 80), and unknown primary (guess is lung or pancreas).
I am at Mayo Rochester, with Thor Halfdanarson. Diagnosed Jan 2020. I was told my situation is inoperable and incurable, so stability is the goal.
At the beginning, I was not a good candidate for PRRT (not enough uptake of the tracer on PET DOTATATE scan). I started with two cycles of CapTem (pill form). It did not work at all for me and I had notable growth on CT scan within two months. I then had 10 rounds of FOLFIRINOX chemotherapy, followed by 50 rounds of FOLFIRI chemotherapy (we discontinued oxaliplatin due to worsening neuropathy). I tolerated chemo well—every two weeks for about 2 1/2 years until October 2022. Started to see growth again in the liver. They repeated the PET DOTATATE scan and my tumors had changed and I was now a good candidate for PRRT, which I started in December 2022, with octreotide injections with PRRT treatment (I do not have a mid cycle injection). I have had two PRRT cycles so far and fatigue is really my only side effect.
New treatments are coming out all the time. This type of cancer is highly unique and individual and morphs over time—treatments that once might not have worked may become a viable option later.
Things seemed very grim for me, too, at the beginning. Do not lose faith or hope. I know I might always be getting some kind of treatment, probably for the rest of my life, but I have two kids and I will take it all if it means I’m still here.
All the love, prayers, and hugs to you. Please reach out if I can help in any way.

Jump to this post

Thank you for this heartfelt comment. I'm at the very beginning of my NET journey, but your reflections touch on questions, feelings ("grim"), and hopes I'm having. Unlike you, I'm 73, so tend to think "oh well...I'm at the end of my life". But I'm not ready to give up either. There are probably many seniors who need the more upbeat attitudes of the young or younger. I also appreciate you discussing the treatments you're having. Thank you @firepowr .

REPLY
1 reply
pjsheridan2022 | @pjsheridan2022 | Feb 16, 2023
In reply to @kellysg "My cancer is Stage IV, but I can't find anything about the staging of my tumor......" + (show)
@kellysg

My cancer is Stage IV, but I can't find anything about the staging of my tumor...

Is yours Carcinoid as well, or something else?

Hope you are doing well with the PRRT! I only experienced fatigue, which got worse with each treatment, and hair thinning, but not drastic enough I had to do anything about it. I also noticed my appetite was crazy, I was hungry ALL the time!

I just found out this morning that Mayo Clinic approved me for a second opinion. I want to make sure I'm on the best treatment plan, and my oncologist suggested I check with Mayo.

Jump to this post

I’m stage IV grade 2. Neuroendocrine, Primary in small intestine, metastatic to liver and other areas. Diagnosed in Feb, 2022. Having treatments at Mayo, Rochester. Basically only feel flu like for 5-7 days post PRRT 3 down 1 to go.

REPLY
1 reply
View MoreView Less
Please sign in or register to post a reply.