Interested in hearing people's experiences with PRRT

@shirleyslominski Prayers for great results!, I go for my 1 year MRI (May6th) to see if the treatment is continuing to work...

Reading about everyone’s different experiences highlights what a truly awful disease this is but also just how brave and resilient people are in fighting it ❤️‍🩹

@kreamks1
That's great to hear good luck to you. I'm hoping for good results one more transfusion then the pet Scan and we will see.

@debbie4la everyone is different you have to understand that. Fatigue nausea a deep feeling of malaise. Now the fatigue is in your bones. I live alone so getting up to make something to eat was a major feat. And the only thing that helped me were gummies. They take away the nausea and they lift your mood and give you energy. Around the 5th week I started feeling better but I had gotten a bout of very bad diarrhea that lasted a few days. By the 6th week I was feeling well enough to go out and drive and shop at a minimum. However, I had my third treatment on Tuesday and yesterday I was driving! I feel better I take a little bit of the gummies but I could probably survive without them but the nausea still there and I do get tired and I take naps a couple of times a day. Everyone's different. I hope you don't have any symptoms. Good luck I'm sure you do fine.

@debbie4la everyone is different you have to understand that. Fatigue nausea a deep feeling of malaise. Now the fatigue is in your bones. I live alone so getting up to make something to eat was a major feat. And the only thing that helped me were gummies. They take away the nausea and they lift your mood and give you energy. Around the 5th week I started feeling better but I had gotten a bout of very bad diarrhea that lasted a few days. By the 6th week I was feeling well enough to go out and drive and shop at a minimum. However, I had my third treatment on Tuesday and yesterday I was driving! I feel better I take a little bit of the gummies but I could probably survive without them but the nausea still there and I do get tired and I take naps a couple of times a day. Everyone's different. I hope you don't have any symptoms. Good luck I'm sure you do fine.

@shirleyslominski Could you explain what you mean by “pretty rough”? I’m facing lutathera treatment and want to understand side effects others are experiencing.

In 2005 I was diagnosed with neuroendocrine tumors in my ilium I had the primary tumor plus six other ones removed. I
Could not have the sandastatin treatment I was allergic to it. Now in 2024 my tumors have been secreting and causing me a lot of problems. Thankfully, they came out with dotatate pet scan so that I can have the scan done without any side effects (from the drug) and I am undergoing lutathera treatments and I'm on my third it's pretty rough but I'm optimistic I just had three out of four treatments the next one is May and then I can have another dotate scan to see if the tumors have shrunk hopefully and take it from there. I did find that I can have the tumors remove surgically if they're swollen up. I hope this was helpful and I hope your wife will be okay

@shirleyslominski mine started in my gut in 1996 and are now in my liver. I have had pain, runny bowels, lost my gall bladder, flushing but now after treatment and monthly infusions I have only runny bowels immediately before the injection