Thank you for sharing

God bless you! Thanks for the encouraging remarks. I will be starting in about a month or so. I wasn't as anxious myself. My wife had concerns. I'm glad she was able to see your video. Now she is not as stressed, and that's a comfort to me. I know everyone is different, and results could vary. But you and other people's positive testimony have been encouraging.

Thank you for sharing this.

Thank you Marie

Thanks for sharing. My wife was diagnosed with pNET in April 22. CapTem treatment has stabilised the growth for now and she is a candidate for PRRT when it becomes necessary. Somatostatin analogue (Lanreotide) starts tomorrow and will continue every 28 days. Your positivity gives us strength. Thank You.

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

I,m at the start of my journey at 65yrs. I,m lucky to be having distal pancreatectomy and poss splenectomy. A ct scan was mentioned yesterday and I hope thats pet/ct with gallium as Ive only had an octreotide scan. You know what its like after a phone consultation! I was so relieved that the scheduled eus/fna was cancelled that my rehearsed question list got side tracked. Wishing everyone as good a path forward as we can all wish for Regards Stuart Bell from UK

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 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 for this video. Great information.

Thanks 🙏

Thanks for your sharing 😊, God Bless you

Thank you for your story!! I’m just starting my journey.

I,m at the start of my journey at 65yrs. I,m lucky to be having distal pancreatectomy and poss splenectomy. A ct scan was mentioned yesterday and I hope thats pet/ct with gallium as Ive only had an octreotide scan. You know what its like after a phone consultation! I was so relieved thathe scheduled eus/fna was cancelled that my rehearsed question list got side tracked. Wishing everyone as good a path forward as we can all wish for Regards Stuart Bell from UK

I was told by my endocrine specialist that PRRT is a last resort thing. I am only getting lanreotied. She said that the body can only handle one treatment. Watching this video and others, I believe that I need a 2nd opinion.

Thx, I'm going to admit my father to take PRRT treatment. He is stage 4 NET patient.

This will be my second round of PRRT

I also had 8 PRRT treatments, my 8th one in a month ago. Just to say that my experience with it is very similar to what is described in this video.

Just to add some info here on my experience. I just completed my third round of PRRT. The biggest difficulty for me as it could be for others is travel. I currenty am going to Epic Care in Hayward California which is 3 hours from where I live. They are a fantastic group in a much more comfortable setting than a Stanford or UCLA would be. My experience so far is very positive with some side effects but nothing that prevents me from normal function. I'm pretty late in the game with NET as I was diagnosed 6 years ago. I believe that earlier treatment would have been better and that is pretty much the only thing I would have done differently. Sending out love and hope to all you folks.

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!

I get my 1st 1 next month

Hi Tom thanks for sharing . Do you feel physically well most of the time? I have a pnet too but haven’t had surgery. I’ve had 2 rounds of PRRT and I’ve been pretty physically unwell prior and during PRRT .

I'm using my hb telephone right now.my name's Kaissa my RMI report a solid lesion in d4 looking suspected paraganglioma.

What are your kidney function labs like?

Can being diabetic hinder the recovery. My elder sister is diagnosed with grade 2 NET, with pancrease, GI and liver metastasis. 4th chemotherapy is done. She has lost weight and is too low.