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Thank you for this information. I have recently been diagnosed with the same type of NET you have. I recently found out about PRRT. I’m still going thru some testing but are recommending surgery, the injection and some chemo. I have been terrified with the news but I’m blessed to have found your video. Thank and god bless you. Wishing you a life full of joy. Same for everyone that has commented.

How to control ascites with liver mastastes

Thanks very informative hopeful

Any help for ascites?

I wold like to know which other countries offer care other than the USA which is in political turmoil.

How’s the best way to get in contact with your Doctor. I’m from Philadelphia.

Well put together thanks

Very informative. Did PRRT- now on this journey for 3 years. Thank God for gifted and talented doctors and professionals.

Thank you Lisa for all you do. You have helped me with your leadership and informative information in my journey with this diease.

So inspiring ❤

Hey Tom! Just a little info about me…I, too, play the piano, live in NC with my husband and daughter, and love the beach! I was diagnosed in 2018 with an NET in my colon and had a hemicolectomy. I went four years tumor free then in 2022, two neuroendocrine tumors popped up in my liver, Stage 4, metastatic. I did two rounds of Y-90 radiation, one on each lobe of my liver and Lanreotide injections…neither worked. I still have the two liver tumors with some minimal growth, plus a tumor in my back, one in my neck, and one under my rib. I never have any symptoms and wouldn’t know I have these if I had not been diagnosed. I did my first Lutathera infusion yesterday and have three more, doing these every other month along with Lanreotide injections on the off months and an Octreotide injection at the end of my Lutathera infusion. Thank you for your post. I feel more optimistic after reading about your journey (my favorite band)…had to throw that in there! I wish you the best and praying for you on your further journey! Melissa Grifton, NC

What a gift you four have shared with us! And thank you LACNETS for posting this!

Dr. Soulen is my interventional radiologist and has prolonged my life immeasurably.

Thank you, Beth, Burt, Denny, and Mary for your eloquent, authentic, and inspiring stories! Listening to what you've overcome and how you're "living normal lives" lifts my spirits. Finding this community, and these awesome videos of not just strangers, but now friends because of LACNETS, has changed my life. You all make me want to "up my game" too. Because we are not our cancer. We can thrive with this chronic disease. Thank you!! God bless you all! ❣

My husband had a right hemicolectomy in June 2024. He had a clear liver CT scan in May 2024. He had a CT scan in July 2024 and the cancer from the colon had spread to the liver.

Reply please

Sir can we treat big liver lesion with prrt

Very informative & knowledgeable video sir.plse guide best treatment for neuroendocrine tumor grade 2 ki 67 5% NET in rectum metastatic in liver. Thanks sir

Hello everyone! I'm in the process of getting a diagnosis. What is my consern is that I feel very bad everyday, suffering from the typical symptoms. Level of chromatogranin A is 647 (norm is no more than 100). As I feel so horribly I'm afraid I'm not going to make it. If someone could write back something to me I would be grateful! I'm 41 living in Poland. Wish you all good health!

❤❤❤

Thank you for sharing

This guy is one of the biggest minds in the NET community

Great info.

"3. What causes NETs to spread? Is there anything that is done to cause NET tumors to spread? " What about what causes them to begin with? I was told the main risk factors were smoking, heavy drinking, obesity and family history. 0/4 I had no symptoms until mid-Oct, diagnosed early Dec, told no liver surgery as they would have to remove most of the liver. Did a couple months chemo, going to start PRRT next week. Also, what do you think of embolization of the hepatic artery? had that in jan.

Great presentation... thank you all

I take rescue shots as needed along with my Octreotide monthly shot

I had two pheocromocytomas please keep me informed ❤

Thank you

Do you know anywhere else in the world where cabozantonib is available to NET patients?

Graham 2048

Thank you Lisa and to all the awesome doctors !

Wow!❤

I had difficult side effects after receiving octreotide injection: hallucinations, diarrhea, high blood pressure. What do I have to avoid in continued therapies?

“Now that being said”

Thank you for sharing this.

Thx for the video. Diagnosed in 2012 with small bowel net. Surgery removed two tumors but met to liver in 2016. Have had 5 liver ablations and one liver hepectpmy. But told last week that I will begin PRRT in April. Optimistic based on your feedback

I love hearing thjs

I’m going in today for a meet and greet . Peter MacCallum centre in Melbourne Australia. Thanks for sharing….

This is such a wonderful and helpful podcast! Thank you, Dr. Gangi and Lisa! This is so informative and well-done!

Hi diagnosed PNET March 2022 stage4 (metastasis to liver, 1 tumour in pancreas 3 tumours in liver) grade 3 18%. Receive 20mg octreotide every 28days

How are symptoms controled? My Oncologist, Gastro have found no relief for my severe chronic diarrhea in a year and a half. Pain flushing joint pain. Its stage 4 metastatic. My quality of life is zero! Im on Octeatide only due to my large weight loss, nutritional value is not good at all. I am aboit done!

Is there any clinical trials going on now ?

❤thanks a lot for this ppodcasts it was very informative how can I get in touch with this doctor to discuss my case

After 8 cycles of PRRT therapy doing dota scan but disease is no decrease what is further management for that pt

i was diagnosd 21/2 years ago with NET of the omentum. stage 4/ I have been on Somatuline monthly since then. I am due to have my first PRRT in early January. I am apprehenshive. Your testimony has helped me with my anxiety. I know that once the first treatment is done, I will feel much better. I have absolutely no symptoms so don't even know I have NET. So I am hopeful that the PRRT will just stop the tumor from growing. My life is full and I look forward to many more years. I am 79 years old.

Thank you. Very encouraging.