NET Patient Story: Re-treatment with PRRT (salvage PRRT)
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- เผยแพร่เมื่อ 18 เม.ย. 2022
- A patient living with neuroendocrine cancer shares his experience undergoing multiple rounds of PRRT treatments. This video was recorded in April 2022.
Additional PRRT resources can be found here: www.lacnets.org/prrt
To learn more about LACNETS, visit www.LACNETS.org.
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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
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.
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
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.
I’m going in today for a meet and greet .
Peter MacCallum centre in Melbourne Australia.
Thanks for sharing….
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 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
Thank you for this video. Great information.
Thx, I'm going to admit my father to take PRRT treatment. He is stage 4 NET patient.
Thank you Marie
Thank you for your story!! I’m just starting my journey.
Thanks 🙏
Thanks for your sharing 😊, God Bless you
This will be my second round of PRRT
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.
Hi, you have finished third rounds of 4 cycles? 12 cycles? and every round is same efective in time or is shorter than the previous?
Hi very encouraging video thanks. Just wanted to know how many cycles can be given to a patient. My husband has just had his eighth. Had seven cycles between 2015 n 2018.
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.
I'll be starting my first PRRT tomorrow here in Philadelphia PA.
I'm concerned I will not be able to joyfully celebrate Christmas with my loved ones. Will I need to remain away from them???
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.
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 have a pnet too but haven’t had surgery." I am assuming that you have metastasis? Because no will give me prrt because I don't have metastasis despite having a low ki67(2%-3%) and SUVmax of 60-70. SSA is the only non-surgical therapy they are willing to give me. The criteria are apparently very strict. Hope you have a good response to prrt with shrinkage as it will give you back years. I gave up trying to get it.
I'm using my hb telephone right now.my name's Kaissa my RMI report a solid lesion in d4 looking suspected paraganglioma.
I get my 1st 1 next month
How did it go? Please explain sides effects and symptoms
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.
Chemo is different from PPRT or targeted radiation therapy. Some countries they give broad chemotherapy, others have had TACE. See if your hospital has clinical trials for Lutathera (Novartis PPRT) or a contract with a hospital which provides PPRT. Having grade 2 well differentiated is better. Your patient should stop bad dietary habits, and find spirituality or meditation to help. Avoiding negativity and being around positive people helps. LACNETS has great videos on TH-cam to educate. Best of luck to you.
Which chemotherapy you’ve got for PNET graad2 and what are the results?
I suggest looking into the Carnivore Elimination Diet and Cancer results. Good results effecting diabetes 2 and cancer. More and more stage 4 cancer patients are recording results on TH-cam.