1. < Neuroendocrine Tumors (NETs)

NET lung with Liver Metastasis (stage 4)

Posted by aliatl @aliatl, Mar 8, 2023

@tufan and anyone else who can be helpful please
My wife has been diagnosed with NET Lung and liver metastasis (stage 4) early December 2022. She was given 4 cycle of chemo to start her treatment. Medicine (chemo) selected named "Atezolizumab, Carboplatin, and Etoposide". She had to take all three (infusion) every 3 weeks for 4 cycles. Doctor suggested to take a complete CT after cycle 2 is finished which took place yesterday. Result came back today, not very promising. It seems nothing has changed. Anyone had a similar experience with these medicines/chemo ? Did you get same results? Did they do the CT to soon? If you had the experience what your doctor did afterwards? Or if you had this Lung NET with liver metastasis and experienced good treatments and result, please share.
I hope everyone the best in their treatment.

Thank you so much for your input!

Ali

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bluedane | @bluedane | Mar 11, 2023

Hi @aliatl

I was diagnosed with lung to liver net July 2021; first dr very negative: however Mayo much better. Many of us are at stage at time of diagnosis and some net doctors do question staging relevancy with this disease because so unpredictable. At any rate my lung nets are Grade 2 and Ki67 5% with many liver nets. Mine are also non functioning so most treatments are not helpful except affinitor, Captem and Radioembolization and bland embolization You need to find out your wife.s grade of tumor in lung because if grade 3 my understanding is that needs to be addressed as small or non small cell lung cancer and treated as such. You need her Ki67 number as well which tells you how much it is expressing. The liver mets can be addressed separately possibly as liver nets but you need to clarify lung net and what grade it is. You really need an expert team. With my grade 2 the affinitor kept things stable but not sure about if your wife has grade 3 as more suitable for chemo. Affinitor worked well for me but some growth in liver mets switched me to Captem in my opinion made things worse in the liver so that I advocated foe embolization to help with innumerable liver masses. Important note the liver is a very remarkable organ and even with all this met in it is functioning well. My hope to shrink down largest liver met and in between embolizations get back on affinitor which successfully prevented spread to anywhere else in my opinion/ will be negotiating that. Bring a notebook when you go to the doctor. Best wishes to you and your wife in this journey!

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bluedane | @bluedane | Mar 11, 2023

Meant to say stage 4 in second sentence

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aliatl | @aliatl | Mar 12, 2023
In reply to @tufan "@aliatl Yes they gived same all three medicines, 6 times x 3 days. After 2. chemotherapy..." + (show)
@tufan

@aliatl
Yes they gived same all three medicines, 6 times x 3 days. After 2. chemotherapy they made CT and results was very good. End of the 6. chemotherapy they wait around 7 weeks And final CT made it jan/23 But results was not good even became worst. First Diogenes July/22 lung, mit metastatic liver after jan/23 CT even brain has metastatic. It was very very fast only 8 weeks without any medical treatment, cancer goes also brain. Dr said it’s very very rare agresiv tumor. I don’t know exactly your case, but my wife large cell Net but has mutation RB1 so it’s like small cell. My opinion is only can help Clinical Trial. Otherwise all the study’s showing short Life. I ll keep you update when I have something new for you!

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@tufan I keep you guys in my prayers. Everything will be good soon! Stay positive and strong!

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aliatl | @aliatl | Mar 12, 2023
In reply to @kim1965 "@aliatl I’ll try to keep it short, our diagnosis hopefully will help you some. My wife..." + (show)
@kim1965

@aliatl
I’ll try to keep it short, our diagnosis hopefully will help you some. My wife was diagnosed with mass on pancreas, and too many tumors on liver to count (inoperable). We immediately started monthly Lanreotide injections along Cap/Tem (Capeciatabin/ Temador) pill version which very effective working with Vancer Care Team. After 6 cycles (months), redid MRI, CAR scans, etc and achieved around 50% reduction in size of pancreas mass and similar reduction in liver. Cancer team had us do three more cycles to try to reduce further. We got to about 80% reduction which allowed surgery to occur 3/1, and have knock it down enough to be a mtn. Item going forward. Hopefully our story at least gives some additional questions ask your doctor about. Make sure they are NET specialists. Let me know if you have questions that I can clarify in our case at least.

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@kim1965

Thank you Kim. I will definitely bring it up at our meeting with the doctor next week. Good luck! Stay strong and positive!

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aliatl | @aliatl | Mar 12, 2023
In reply to @lastround "100% agree, make sure the doctor is a NET specialist. I’m on my 3rd hospital. The..." + (show)
@lastround

100% agree, make sure the doctor is a NET specialist. I’m on my 3rd hospital. The first 2 wrote me off last summer… hospital 2 was a major Boston hospital.
Mine is pancreatic that has spread to my liver, stage 4, inoperable.
Hospital 2 told me not to worry, liver failure is painless, would you like to be in an End of Life study?…..F/U, I’m not buying a shovel yet!
That was last August. Hospital 3 is Dana Farber in Boston, put me on chemo immediately, 12 rounds in 6 months and I’m still here.
Tumors have shrunk over 50%.
So, keep fighting and don’t believe everything that you are told.

Good luck

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@lastround
Thank you for your input! I wish you the best in health and happiness! Keep up high energy!

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aliatl | @aliatl | Mar 15, 2023
In reply to @bluedane "Hi @aliatl I was diagnosed with lung to liver net July 2021; first dr very negative:..." + (show)
@bluedane

Hi @aliatl

I was diagnosed with lung to liver net July 2021; first dr very negative: however Mayo much better. Many of us are at stage at time of diagnosis and some net doctors do question staging relevancy with this disease because so unpredictable. At any rate my lung nets are Grade 2 and Ki67 5% with many liver nets. Mine are also non functioning so most treatments are not helpful except affinitor, Captem and Radioembolization and bland embolization You need to find out your wife.s grade of tumor in lung because if grade 3 my understanding is that needs to be addressed as small or non small cell lung cancer and treated as such. You need her Ki67 number as well which tells you how much it is expressing. The liver mets can be addressed separately possibly as liver nets but you need to clarify lung net and what grade it is. You really need an expert team. With my grade 2 the affinitor kept things stable but not sure about if your wife has grade 3 as more suitable for chemo. Affinitor worked well for me but some growth in liver mets switched me to Captem in my opinion made things worse in the liver so that I advocated foe embolization to help with innumerable liver masses. Important note the liver is a very remarkable organ and even with all this met in it is functioning well. My hope to shrink down largest liver met and in between embolizations get back on affinitor which successfully prevented spread to anywhere else in my opinion/ will be negotiating that. Bring a notebook when you go to the doctor. Best wishes to you and your wife in this journey!

Jump to this post

Hello @bluedane
Thank you so much for your input! They never did biopsy from her lung, however they did from her liver and since her lung had the largest mass up to 7 cm, based on her liver biopsy they found out that it's NET and the ki67 was measured 8%. Doctor was confident that primary is lung with Mets to liver, hip, and her breast. Today we are at infusion center and her 3rd cycle started. Doctor told us the CT result is encouraging and the disease is stable. Doctor said we will continue the chemo for 2 more cycles (total 4) and then we do MRI. If everything is stable she remains on her immunotherapy only for the next two years every 3 weeks. She (Doctor) believes surgery on liver is not an option . I shared other medications that you guys used and she said due to her grade of tumor the medicine she receives is the best at the moment. We hope everything goes well and I wish you the best . Stay informative, strong, and positive (ISP)

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bluedane | @bluedane | Mar 15, 2023

You are so welcome and thank you for words of encouragement. Sounds like you have a good supportive team working with you. The immunotherapy drugs are amazing and it is great she is genomically matched for that. They usually do only biopsy liver and look for the blood values that indicate lung to liver met. Sounds good that things are stable and chemo is helping. down the road the liver directed therapies if needed can include percutaneous injectin of ethanol or cryo or microwave ablation on small ones I think. Sounds like you are in good hands. Each day is a blessing! Best wishes.

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bluedane | @bluedane | Mar 15, 2023

Ki67 at 8% is good. Best wishes.

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gig666 | @gig666 | Apr 20 9:33pm

I was recently diagnosed with NETs in my lungs, small ones.
I had the all mighty PET\CT skull ...GA68-NETSPOT in March, 2024.
They never mentioned my liver that in pass on Cat was fatty and had a longer tip. This Pet/Ct. Mentioned my "mean LIVER SUV. was 9.6., Should be 1.55 to 2. Have. any of you had a SUV.#, l know it shows a uptake of tracer..cancer.
I have NET. Syndrome bad and now feel liver pain.

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