NET lung with Liver Metastasis (stage 4)

I had surgery on Feb.1. Distal pancreatectomy, removal of part of the stomach, gallbladder and spleen., and total histerectomy. Some mets in liver were also resected. Had my first meeting with the oncologist. He informed us that my NET was a stage 4 due to metastases in liver. I am starting monthly injections of Lanreotide Monday, and radiation ( for the endometrial cancer) in April. I am hopefull and optimistic, praying to be strong during treatments.
May you all be in God's hands during this hard journey!

@pavlina60 Thank you so much for your input! I am sure you will get the best result. Please stay strong and keep positivity always, I promise you will get your result! God is with us!

@aliatl

Hi Ali, I’m sorry that results not good. My wife had chemotherapy exactly same but instead of 4 she had 6 times now also she has in brain metastatic. We are now having following therapy ACO protocol (chemotherapy strong) and radiotherapy. You may ask following immutherapie may help nivolumab or pembrolizumab. Also maybe you search clinical trial maybe can help you. I wish your wife and to you all best

@tufan thank you for your quick respond. I wish your wife quick recovery as well! If I understand correctly, you mentioned your wife had chemo for 6 cycles. Did they do all three medicines that they gave to my wife? Also, what was the result exactly? At what cycle did they did they do the CT scans to check her status?

Thank you so much!

@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!

@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.

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

P.S.
The chemotherapy drug I was on was Flofox

I was on Flofox chemotherapy for six months and my tumors [liver and pancreas] and a monthly shot of Oxaliplatin, the tumors shrank over 50%.
Look at my other posts , but make sure you’re dealing with a NET specialist.
I’m on my 3rd hospital, first 2 were treated me like I had “regular “ pancreatic cancer and nearly killed me.
The old watch it grow strategy.
I have scans every 2 months and am about to start a maintenance program.
Get a second opinion, it can’t hurt
Best wishes, good luck to your wife

Hello @aliatl,

As others have mentioned, try to have a consultation with a NET specialist. If there is not a NET specialist nearby, perhaps a virtual consultation would be possible. NET specialists are more experienced in treating this rare type of cancer. Here is the website that lists NET specialists throughout the world:
--Find a Doctor
https://www.carcinoid.org/for-patients/treatment/find-a-doctor/