Interested in hearing people's experiences with PRRT

@jayace2430 I sincerely hope your wife’s meeting went well? Those early meetings were a little overwhelming for my spouse and I as we tried to get our heads around NETS on an intellectual and emotional level. I’m glad I had surgery and have been as aggressive medically as I can be. After surgery in 2020 to remove that one tiny tumour that had been accidentally found when looking at a scan for another minor ailment, I was clear of NETS until 2023 when it reemerged. Not a good day. I don’t regret having surgery as I feel that I need to be as aggressive as possible medically, within reason, to give myself the best chance to live a long life. I have a multidisciplinary medical team that meets to discuss my case when there is change and I have been guided mostly by that team as to my treatment since 2023. A family member is a well-respected surgeon and I discuss issues with him also. I have had few symptoms except with my prrt treatment I suffer from fatigue. Although usually active, I have had to rest everyday after prrt.

Thank you for your reply. When you hear the “ matasitise and aggressive” words, it automatically triggers the “ fight or flight “response to happen. I'll keep you posted on the treatment recommendations after my wife’s PET scan and doctor's visit.Thanks again very much -:)

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Stay hopeful as it’s amazing how much medicine is advancing in this area. I have (small & currently slow growing) tumours in my liver and bones - that certainly triggered my flight and fight response. My multidisciplinary medical team remain cautiously optimistic with my treatment so onward & upward. Surround yourself with ‘can do’ people who are positive and keep living a ‘normal’ life as much as possible so that NETS doesn’t define your wife. Any stabilisation of the tumours is a massive win

@jayace2430
You might find it helpful to read @shirleyslominski's post below. https://connect.mayoclinic.org/comment/1529589/

@shirleyslominski I am also allergic to Sandastatin,(Ocreotide) I have a respiratory reaction to the drug, But it was the only drug that controlled the Carcinoid Hot Flashes.. I take a double dose of Benadryl 1 hour before the shots and I've been ok for close to 3 years.. What allergic
response to you have?

Within days of my first shot of sandostatin I developed rheumatoid arthritis severe. But what was most frustrating is no one believed me they said it was a coincidence and that was the beginning of doctors trying to push my symptoms off to something that is a coincidence or something I may have done wrong. But that was back in 2005 and fast forward now the doctors recognize ra as a definite side effect from the sanostatin and octreotide pet scans. But I was lucky that it took 22 years for my tours to start secreting and I had to look into other treatments which I was afraid to take after my first experience.

@vinnie694
I came down with rheumatoid arthritis severe within one week of taking sandostatin. I stopped taking it although the nurses and physicians said go ahead keep on taking it I told them absolutely not. The tumors are in my stomach and pelvis and I've lived 22 years without any treatment at all. I started having symptoms in 2024 the tumors were secreting and that messed up my entire net system. Unfortunately I have not found a doctor where I live who i can talk to. everything I know about this disease I learned online and it has been very helpful. And I have found the radiation Doctor who was answering my questions as far as symptoms are concerned after every treatment this is my third treatment and I'm feeling pretty good actually my first two not so much pretty awful but this is my third day and I feel not too bad. I had been taking gummies for the stomach pain and it also helps elevate your mood from the constant malaise and fatigue. So things are going along smoothly so far.

@shirleyslominski That must have been frustrating. I know that after my diagnosis, it has been difficult for me not to relate new issues to the shots or the cancer. Most ailments could be age or not even related to the tumors. My reaction was undeniably caused by the shots, as I wound up in the emergency room within a have hour of getting the shots. It was a first for my medical team, so that shows how much we are still learning about this.. Here is hoping for more breakthroughs in the future.. Have a blessed weekend..

@vinnie694
I was in touch with Novartis who makes the drug and talk to a chemist there and he denied RA as a side effect! It actually enraged me because when I looked at the pamphlet which has tiny tiny words in it and many pages there was rheumatoid arthritis. Fast forward now it is definitely considered a side effect. That had caused me more problems than the tumors (at the Time).

I received PRRT at UAB with success. The treatment works on active sites. I have inactive sites so I have to keep check on those