Lost with no confirmation of NETs origin: Innumerable liver lesions

I also had multiple small lesions in my liver and a few larger ones. I decided on SirSpheres Y90 embolization which did a great job on the small ones and reduced the larger ones. I did get radiational pneumonia from it though. They did microwave ablation on the larger ones later when my ileum primary was resected. A minute bowel leak kept me having recuring abdominal abscesses for the next year. From now on I will let one thing heal before having something else done.

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!

@firepowr if you don’t mind me asking, what have they said about yours that is considered aggressive? The Ki-67%? Well differentiated or not?
The approach they have with the chemo is treating it as a small cell lung cancer- even though the lungs are clear. I’m assuming it’s due to the cells that are expressed and how rapid growing they are?
Apparently G3(well differentiated- Ki-67: 70%)NETs originating in the small intestine and Mets to liver is even more rare and no “standard of treatment” found.
Feeling pretty defeated with the prognosis of less than 2years since study’s are limited. This forum gives a little hope to make it past that but have yet to read about situations as aggressive as this one

Hi I was diagnosed in June of2021 with lung to liver net Ki67 1-5% with two grade 2 carcinoid in lung with large and 25 small lesions in my liver. Mine are non functioning so was told by a gruff specialist all the things that were off the table. I had to request if there was anything was told Affinitor and also chemo drug as second choice. This first doctor was very negative and unhelpful. Then went to Mayo treated more respectively which makes a huge difference. Also I had done about 1000 hours of research on nets and by now about 2000 hours. And attend the support group, exercise, counseling accupuncture and this group. I had continued to be asymptomatic as mine is non functioning. The afinitor worked for about a year with few to no side effects. Had to switch to Captem cocktail chemo pills 10/13/23 which caused fatigue some nausea and constipation it also seem to make things worse in the liver with new growth. My lungs are stable though and it has not spread beyond lung and liver so I feel the Afinitor worked for me. I have now requested a intervention radiology consult to occur this week My goal is hopefully to have bland embolization, or freezing or heating the liver tumors to decrease tumor load. My liver is working fine but if the load needs to be decreased and would like to get back on afinitor as I feel it did 80% of its job with stable lung and no other spread to rest of body except for increase in liver mets. I believe a nuanced approach is needed with this unique proliferation of cells. The most hopeful helpful discussion for me is the ABC.s of neuroendocrine cancer provided by expert doctors across the country. My question is has anyone had bland embolization or cryo ablation for liver mets and any side effects. Thank you and best to everyone,

@firepowr if you don’t mind me asking, what have they said about yours that is considered aggressive? The Ki-67%? Well differentiated or not?
The approach they have with the chemo is treating it as a small cell lung cancer- even though the lungs are clear. I’m assuming it’s due to the cells that are expressed and how rapid growing they are?
Apparently G3(well differentiated- Ki-67: 70%)NETs originating in the small intestine and Mets to liver is even more rare and no “standard of treatment” found.
Feeling pretty defeated with the prognosis of less than 2years since study’s are limited. This forum gives a little hope to make it past that but have yet to read about situations as aggressive as this one

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!

In reply to Blue Dane:
I was very recenty diagnosed with 1 NET in my liver and 1 NET my lung. I have had biopsies on both, It was determined that the NET on my liver can be removed by Microwave Ablation by Vascular Interventional Radiology and I will have this procedur done on March 10th.
I am so new to this that I don't always understand the lingo and what people are talkin about. Pease be patient with me. I will be having another (3rd) PET Scan on my Lung NET next Friday using some "special dye" for NETs.

I also had multiple small lesions in my liver and a few larger ones. I decided on SirSpheres Y90 embolization which did a great job on the small ones and reduced the larger ones. I did get radiational pneumonia from it though. They did microwave ablation on the larger ones later when my ileum primary was resected. A minute bowel leak kept me having recuring abdominal abscesses for the next year. From now on I will let one thing heal before having something else done.

Hi I was diagnosed in June of2021 with lung to liver net Ki67 1-5% with two grade 2 carcinoid in lung with large and 25 small lesions in my liver. Mine are non functioning so was told by a gruff specialist all the things that were off the table. I had to request if there was anything was told Affinitor and also chemo drug as second choice. This first doctor was very negative and unhelpful. Then went to Mayo treated more respectively which makes a huge difference. Also I had done about 1000 hours of research on nets and by now about 2000 hours. And attend the support group, exercise, counseling accupuncture and this group. I had continued to be asymptomatic as mine is non functioning. The afinitor worked for about a year with few to no side effects. Had to switch to Captem cocktail chemo pills 10/13/23 which caused fatigue some nausea and constipation it also seem to make things worse in the liver with new growth. My lungs are stable though and it has not spread beyond lung and liver so I feel the Afinitor worked for me. I have now requested a intervention radiology consult to occur this week My goal is hopefully to have bland embolization, or freezing or heating the liver tumors to decrease tumor load. My liver is working fine but if the load needs to be decreased and would like to get back on afinitor as I feel it did 80% of its job with stable lung and no other spread to rest of body except for increase in liver mets. I believe a nuanced approach is needed with this unique proliferation of cells. The most hopeful helpful discussion for me is the ABC.s of neuroendocrine cancer provided by expert doctors across the country. My question is has anyone had bland embolization or cryo ablation for liver mets and any side effects. Thank you and best to everyone,

Hi I was diagnosed in June of2021 with lung to liver net Ki67 1-5% with two grade 2 carcinoid in lung with large and 25 small lesions in my liver. Mine are non functioning so was told by a gruff specialist all the things that were off the table. I had to request if there was anything was told Affinitor and also chemo drug as second choice. This first doctor was very negative and unhelpful. Then went to Mayo treated more respectively which makes a huge difference. Also I had done about 1000 hours of research on nets and by now about 2000 hours. And attend the support group, exercise, counseling accupuncture and this group. I had continued to be asymptomatic as mine is non functioning. The afinitor worked for about a year with few to no side effects. Had to switch to Captem cocktail chemo pills 10/13/23 which caused fatigue some nausea and constipation it also seem to make things worse in the liver with new growth. My lungs are stable though and it has not spread beyond lung and liver so I feel the Afinitor worked for me. I have now requested a intervention radiology consult to occur this week My goal is hopefully to have bland embolization, or freezing or heating the liver tumors to decrease tumor load. My liver is working fine but if the load needs to be decreased and would like to get back on afinitor as I feel it did 80% of its job with stable lung and no other spread to rest of body except for increase in liver mets. I believe a nuanced approach is needed with this unique proliferation of cells. The most hopeful helpful discussion for me is the ABC.s of neuroendocrine cancer provided by expert doctors across the country. My question is has anyone had bland embolization or cryo ablation for liver mets and any side effects. Thank you and best to everyone,