Interested in hearing people's experiences with PRRT

I started the prrt treatment in 1-04-26 had second treatment 3-07-26 did not any problems.

Was wondering if anyone new if you have have to do something with bedding pillows etc thanks kurt

@kurtjazzy01
Other than 3 days later I washed my bedding and all my clothes I wore
I really didn’t worry to much about anything else
Good luck

@sophiarthappse thanks kurt,

Hello
Just had my second PRRT session. NETS started in my liver and despite surgery removing the small tumour within two weeks of it being identified, two years later NETS came back seeding in my liver ( regular scans identified this) and various other places - about 16 small tumours in all. My biggest issue has been fatigue post PRRT. Prior to PRRT I had few symptoms. I try and remain active but need to rest each day since my first session. I make sure I eat a quality protein meal every day - salmon beef chicken etc with vegetables/ fruit high in vitamin c to help with the absorption of iron and just get on with living. It tough living g with the uncertainty of not knowing if PRRT will be effective and if I will get leukaemia from the treatment but I’m very grateful to have the option to undertake PRRT and try and remain positive. I think each person has their own journey but my advice is to surround yourself with positive people keep living life as much as possible and take every medical opportunity you can get.

Hi ... My wife is scheduled to see her doctor after being diagnosed with NETS metastasized in the small intestine. Surgery is possibly being recommended. What has been your course of action? Presently, I have been able to keep her in a positive mindset. It would be great if you could share your experiences.

@jayace2430 hi I had surgery in 2009 I had to have part of my liver removed along with several tumors 4 were left to deep to get also had 3 in small intestine removed. The outcome was good.

@jayace2430

@shirleyslominski

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