Interested in hearing people's experiences with PRRT

Next treatment is June 24. Each of the four treatments will be approx eight weeks apart. Response to the treatment will be done with tumor marking lab work and eventually imaging.

Have had some minor bouts of nausea other than that I have been feeling ok. I a busy week of appointments next week; Monday is lab work, COVID testing and an office visit with my oncologist in Eau Claire. Wednesday is my treatment day in Rochester, then on Thursday an octreotide injection in Eau Claire. Thanks for checking in. Will let you know how Wednesday goes.

Hello @klpetts,

I just noticed that your next treatment will be next week. How are you feeling?

Next treatment is June 24. Each of the four treatments will be approx eight weeks apart. Response to the treatment will be done with tumor marking lab work and eventually imaging.

Letting any of you that are considering the PRRT treatment know that my first treatment last Friday (April 24) went well. I happened to arrive early and they were ready for me! Once in my hospital room for the day I had the series of infusions and the lutathera and was able to leave later that afternoon. I had to practice even more social distancing (3 feet) from everyone for 72 hours. Only reaction that I had was some nausea on Sunday, but that may have been from something that I had eaten or perhaps had done too much around the house, since I was feeling good I thought that perhaps I should get some things done. Next time they will wait.

Hello @klpetts,

I am sorry to hear of your struggle with a NETs diagnosis. I can only imagine how disappointed you must be. If you don't mind sharing more, could you share what the other treatment option was?

I am wondering, however, why your appointments in Rochester (I'm assuming that you were going to the Mayo Clinic) were canceled.

All patients have the right to obtain a second opinion. Have you considered getting a second opinion at Mayo to see what other options may be available to you?

Here is a video presentation from Dr. Thor Halfdanarson, who is a world-renown NET doctor at Mayo. You might find his talk interesting,

I ve had awareness of my PANCREATIC NET for a year plus. Rare, with established core but slow growing. If I continue with a positive attitude good fat free protein reduction from red meats of coarse no smoking tobaccos and a vegetarian diet my chances of halting NET growth and living another 20 years plus providing no further metastasis of NETS. So for me I m banking on this plan.

Thank you Teresa.
In August of 2019 I went to the ED for abdominal pain, after lab work and testing (x-ray, CT, abdominal US) it was discovered that I had an ulcer in my duodenum, and was admitted for a few days. During my hospitalization I had more testing (EGD, CT with more images), with this it was found that I had a possible mass attached to the ulcer. At my post hospital follow up in GI I was scheduled for a second EGD, this time with ultrasound. During the follow up from that I was told that I should have the Whipple procedure done. Referrals and appointments made for me to to to Rochester. My GI provider then had me do a PET scan with dotatate. With those results in he called me with the unfortunate news of pancreatic neuendocrine cancer stage IV, and canceled the appointments in Rochester. I was then referred to the Cancer Center in Eau Claire. In October I started octreotide injections, which I get every four weeks. My CT and lab work for the end of Dec/ beginning of Jan was good. Then in March I had lab work and another PET scan, those results were not in my favor. The scan showed that the cancer had spread to more parts of my body. My oncologist gave me a couple of options, with the PRRT being one of the options. Karin