Neuroendocrine of the Liver

pad27

Hi all. New to the forum and also outside the USA. Just wondering if anyone has experience of treatment for neuroendocrine Cancer of the Liver. I have a family member that underwent tablet chemotherapy which didn't work. Wondered if anyone maybe could shed any light on other possible alternatives. Thank you.

peet

Hello yes I am a survivor of Neuroendocrine. I had it in the small lobe of my liver and a bunch of other places. After intense surgeries I am free of it to date. My team at MGH used octreotides to effectively block and slow tumor growth. Once they felt that was effective they took out a ton of cancer. I rattle a bit when I walk lol but feel about 15yrs younger

peet

continued from above. I am new to this whole board stuff was looking for support groups for survivors but am definitely willing to offer support to those going through it.

There is no great info on Neuroendocrine cancer out there as it is rare. There are newer treatments every day. Mine would not respond to chemo or radiation though I had radiation for a second cancer. In my case use of octreotide and 2 surgeries mitigated it to date. Lot’s of spare parts removed: spleen, sm lobe of my liver, some small intestine, terminal illium, appendix, gal bladder, tip of pancreas, and lymph nodes in mesinteric. Sounds scary but it was all doable don’t be scared you can do anything you put your mind to. I had an amazing team for both cancers they along with some crazy devine intervention saved my life.

I am 1 year 4 months out from surgery. I am a psychotherapist as well and with that comes a dark sense of humor which helped me a great deal through this cancer. I laughed as much as possible. Joked with my caretakers. Stayed involved in life as much as possible. Not to say there weren’t times it sucked….a lot…and there are still times now it is hard. “Being cured” physically seems to not be the end of cancer road. There is a huge emotional component that comes after.

stillpeachy

https://csn.cancer.org/discussion/comment/1694662#Comment_1694662

Hi, thank you for sharing. Your case is very encouraging. I have small intestine neuroendocrine tumors (NETs) with mets to liver (innumerable, KI 67=15%), both breasts (KI 67=35-45%), tail of pancreas and surrounding lymph nodes, and bones. What is your KI 67 and are you well-differentiated (WD) or poorly-differentiated (PD)? I have had two liver embolizations and am currently doing chemotherapy. Who is your doctor and who did your surgery? I have been told I am inoperable by several NETs specialists. This has been disheartening. I am having a difficult time dealing with treatment decisions. Even with specialists, it’s left up to me to make the right decision because their recommendations are never in agreement.

peet

Hey,

O.K. My KI 67 was 1.7 well differentiated. My Chromagranin A was always on the low end of the scale. They used Octreotides on me to block the growth of my tumors whilst I waited for surgery. These have a protein on the molecule that matches the protein on the NET and it surrounds the tumor and kind of locks it down for a time. They also used this to payload the radioactive isotope used in my PET study to find my tumors. Of note there is a med that they payload lutetium Lu 177 dotatate to actually help kill NETS. When I asked my doctor about this he said it could cause Leukemia and I was like “**** I already have 2 cancers”. He wanted to wait to see if we could do surgery we did that and the lutetium is off the table…. for now. If my Neuroendocrine ever returned I would push for this.

I was lucky only the small lobe of my liver had a 4cm NET not both lobes which meant I could have the surgery. I also had them in my terminal illium, small intestine large intestine mesenteric lymph node involvement, they pulled my spleen and tail of pancreas however they were not NETS my pancreas grew into my spleen.I am now 56 at the time 53 and there was concern on their part about doing surgery as it was quite extensive. I have some narley scars and I tell people a shark with no bottom teeth bit me.

my Doctor is Jeffrey Clark at Massachusetts General Hospital and my surgeon is David Berger. Both are amazing. Please please please keep in touch. I hated how alone I felt when I got my diagnosis. The info on the web sucks. I know how lucky I am to be here. If I can give back now by listening I would be happy.

with regards to treatment decisions I pushed for the “get this **** outta” me option. At one point I thought they wouldn't do the surgery. I thought “o.k. then I will continue with my Octreotide injections and ride this train to the end enjoying every day. I’ve always been the hippie type. Watch birds notice clouds, fly kites, surf etc. I found peace in that life. Even when they said they would do surgery I thought “damn it I found peace with having cancer now I need to change gears”. Yeah dumb. I was pretty nervous about surgery.

ok talk soon - Pete

stillpeachy

https://csn.cancer.org/discussion/comment/1696017#Comment_1696017

It’s a good thing you were low grade. I am mid and high grade with high hopes. I’ve been told high grade is what makes me inoperable. Believe me, I’ve searched for a doctor that would take them out. I even wrote National Institutes of Health (NIH) who accepted my case and took it to their tumor board where they also confirmed I am inoperable.

Besides chemotherapy and liver embolizations, I also have Sandostatin (Octreotide) injections every 28 days. Initially I had Lanreotide before my NETs specialist switched me to Sandostatin.

This Saturday, I will have scans to see if chemo is working. PRRT (using 177-Lu-Dotatate) is being saved as my last option. However, NIH recommended PRRT as my first option but by the time I heard from them I had already started chemotherapy.

When I was first diagnosed, I was told to get several opinions from NETs specialists so I did. I traveled to other cities and for some I had virtual appointments. After the first meeting with each, I was confident I had the best team and a solid plan. My expectations quickly tumbled when it came time for my next treatment decision. None of them didn’t agree with my local doctor’s plan of action and they didn’t agree with each other. They didn’t want to collaborate. I just wanted them to be open to hearing each other or at least talking to my local doctor. Since they’re all considered experts in neuroendocrine, perhaps ego got in the way or they were just that busy. I decided last week that I need to pick only one doctor for my care. Why didn’t I do this earlier? I think I just kept hoping one would say I was operable eventually. I’m still adjusting to living with cancer. Next week will be another important decision period. I’m ready and hopeful. Thank you for sharing and listening.

JoniandAnthony

https://csn.cancer.org/discussion/comment/1696017#Comment_1696017

Wow! You have been through it!! My husband was diagnosed a year ago, there is no one for him to talk to, not enough info. out there. I am a 3x cancer survivor, and now this.....he is doing Sandostatin once a month and just did 2 embolizations so far with one more to go. His pain level is through the roof, we put last one on hold.... he has 23 tumors on his liver with a spot on the tail of the pancreas......I don't know what KI is and I should check about differentiated. How does this come into play? Any info. would be helpful and I really think my husband could benefit from talking to you both, if you have the time? My name is Joni and my husband is Anthony. he is not a candidate for surgery I was told. We are at Moffitt in Tampa Fl. and we live in Naples about 4 hours away so we get the shots done here and we had the embolization here as well, thank god, because I couldn't imagine being that sick in a hotel room, then a 4 hour ride the next day. The treatments are kicking his ****, even the monthly Sandostatin. Thank you for sharing your stories. God Bless

Joni

https://csn.cancer.org/discussion/comment/1696009#Comment_1696009

Where are you being treated? Your situation is similar to my husband's. He has 23 tumors on the liver, spot on the tail of pancreas and small spots in the stomach and some lymphnodes are involved. At first they said he isn't a candidate for any other treatment other than Sandostatin. I did not agree. After 3 scans which showed no growth, they said embolization. He has had 2 so far, the pain is horrendous and he gets very sick afterward. I am curious to see how you are handling the treatments? Sandostatin and the embolizations? Thank You for sharing and listening. You both are true warriors! I am a 3x survivor.....stage 3 throat then melanoma on my chin, 5 hour surgery and 3 lymphnodes in neck taken out. Nine years later, stage 4 metastatic melanoma....still no cure, I did a clinical trial that all but killed me! One of the meds did not get FDA approval and the side effects were terrible and they haven't stopped. AVN, had hip replacement, Gall Bladder out, adrenal glands blown etc. etc. etc.......My husband also does not have a pituitary gland, he had a benign tumor, two surgeries, then seven back surgeries! He was in the military so that can be the cause of some of this?? Thank you so much! I hope to hear from you and if you ever need to vent or talk, I am here for you. Thank you

Joni

peet

Hey folks so very sorry about the delayed response, been busy. You folks are amazing, soldiering on through all you are dealing with. The Sandostatin does not bother me any longer. At first it made me feel nauseous but after about 3 months I believe that subsided. Now it’s just a med I take every month. When they took the tail of my pancreas my diabetes went nuts so now I take Ozempic. That was ridiculous to get used to. Nausea, pain everywhere I had cancer…. Good stuff, but my diabetes is better, and I’ve lost more weight. Ahhhhh the cancer/ Ozempic diet…. This time I’ll keep it off.

so…. What helped me the most? Humor. I did **** to make people laugh, which got me laughing, and it helped It is so hard to do when faced with any type of cancer, but is was critical, as critical as the physical treatment. Here’s a story that may get a laugh.

the day of one of my scans a very nice nurse comes out and says “hey sweetie, how you doing?” I say “I have a little scanxiety, and I wisper ‘I just hope they don’t find cancer’”. She goes white as a ghost at which I say “no no no I’m kidding, I have 2 and I’m at peace with it”. I let her know I am a psychotherapist who worked on a crises team and in ER’s doing evaluations. She was an ER nurse and we had a few laughs. I see her from time to time now and we still laugh.

i will try to check back more and if I can offer any support, or stupid jokes let me know -Pete