Neuroendocrine Lung stage 4B with metastasis in liver

Welcome @tufan, I'm sorry to hear that treatment thus far has not slowed the progression of the neuroendocrine tumor of the lung. I'm tagging fellow members who have a similar diagnosis like @margot69 @tatteesmom3 @paulaelliott007 @gapsc @surbhi1 so they can share their experiences.

You may also be interested in these related discussions:
- Typical Carcinoid Tumor in Lungs https://connect.mayoclinic.org/discussion/typical-carcinoid-tumor-in-lungs/
- Not sure I'm in the right place: Stage 4 Neuroendocrine carcinoma https://connect.mayoclinic.org/discussion/not-sure-if-i-am-in-the-right-place/
- NETs: Anyone has Liver debulking for liver metastasis? https://connect.mayoclinic.org/discussion/net-liver-debulking/

Have you asked your cancer team if you may be eligible for any clinical trials for stage 4 neuroendocrine cancer?

Greetings....I am still standing and living a normal life at 85 with my disease in the lung and metastases to bone. All currently stable. Monthly infusion of Lanreotide is still ongoing.

Low dose radiation to lung tumors about a year ago is still having a beneficial effect on Atypical lung lesions.

There are now many experts on NETS throughout USA, Mt.Sinai,NY and SK are centers of excellence.
Look at Ronnie Allens website and newsletters for excellent info on new treatments and trials.
https://ronnyallan.net/2023/01/22/neuroendocrine-tumors-are-uncommon-but-definitely-not-rare/
Good Luck and keep smiling GAP

Hi Gap, thanks for your reply! I ll check the link. I wish you all the Best

Hi GAP,

Last May 2022 I had a lung NET removed with the right upper lobe of lung and lymphnodes. I was healing well for 3 months. In August 2022 I was in extreme thoracic pain and the PET CU dototate scan showed my spine had SUV uptake and a lesion 4th and 5th vertebrae. Since then I have had fractured ribs 5th and 7th and right upper abdonimal pain, swollen hot tender right upper abdonimal with nausea. They say the right upper abdonimal is a liver hemangioma with a small cyst and they do not want to do anything about it.
Janaury 2023 I had another PET CU dotonate scan and the spine SUV uptake is still highlighted and I am still in back, rib and upper right abdonimal pain. Should they be referring me to another doctor instead of an oconologist since they say not to worry about the SUV uptake activity and lesion in the vertebrae and are confident it is a hemangioma and cyst in the liver? I really wouldn’t care, but something is not right, I should not be in pain. The oncologist don’t seem to be concerned about the lesion in the vetebrae (even though it had SUV uptake) and liver being neuroendocrine cancer because they tell me lung NETS don’t spread (my pathology report notes angiolymphvascular invasion) and I don’t think it is right they leave me hanging especially since I went back to them in August because of the thoracic and spine pain and then they found the lesion in the vertebrae. In September 2022 I had to go into the doctors because my right upper abdonimal was hot swollen and on fire and I was nausea and they think it is a liver hemangioma and say to just live with it. Is there a team that can help me?

I would encourage you to become your best advocate. This is done by educating yourself in your NETs journey. Ronny Allan is a great start. You might want to bookmark this site as well.. (NETRF.org)
Here you will find a wealth of information on the cancer. Best of luck on your research and remember many lead productive lives with NET.

Be well and be strong.
CEB

Hello, sorry to hear you are having such difficulty. I do not know who is rendering care to you at this time, but I hope a NET specialist, not just a general oncologist, is on your team. You can find them easy enough at large medical centers, NY, Texas, Tennessee and even in Florida.
Sounds like a second opinion is in order.
You should become familiar with all treatments available i.e PRRT. Surgery is the first order of cure with NETS. so thats good.
Ron Allens NET website is a great sources of world class treatments. He will communicate with you on line too. Hope this helps. Best Wishes GAP

Thank you!!!

@tufan HI Tufan, I'm sorry to hear that. I hope soon you start getting good treatment where you see good progress happening. My wife is also diagnosed NET Lung with metastatic liver , bone, thyroid . They said surgery is not an option and they put her on chemo and immunotherapy started last Wednesday for 4 cycle taking 3 months. She started some pain last night around her lung area. I'm worried specially since you didn't get result . I was wondering what kind of chemo you were given. Her immunotherapy is the medicine as yours. Please advise on your experience.

Again, I hope you start feeling better soon.

@aliatl Hi thanks for Reaply, sorry to here about your wife, she got Diogenes last summer end of July starting following week Chemotherapy 6x 3 eteposid and 6 time cisplatin and 6 time immutherapie Atezolizumab. After 3. Chemo CT was really good but after 6th Chemotherapy around 6 weeks after CT results was not good. Now we start yesterday new Chemo name is AOC. And she had pain also in lung but the reason was Water in Lung(1,5LT) now they took the water from lung I ll keep you up date when we start other therapy
Good luck

I forgot to saying she got also lung infection, we thought because of the chemotherapy but after Dr find out Tumor in the Lung made it.
Also I forgot to write very beginning also they made it molecular pathology then they start first chemotherapy. Hope that somehow help those infos. Wish you all the best for your wife and for you.