We get a lot of questions about Peptide Receptor Radionuclide Therapy (PRRT). This is a list of questions answered by Dawn Marie about her personal experience with PRRT.
- What to take with? Some say hardly anything because of the radioactive.
- They kept me hospitalized in Europe for several days because of the radiation levels. Here in the U.S., I understand that they send you home the same day. So, I wore the same clothes every day while I was hospitalized and when I left the hospital, I threw out anything that I wore (if it was something I could part with) or if I brought it back, I kept it in a separate place in my suitcase. The only thing that will get the radiation out of your clothes is time. The half-life of lutetium-177, which is the type of radiation they use in Lutathera here in the U.S., is 6.6 days. So, I would plan to just wear the same thing for a while, maybe not something you love. Also, I would try to avoid sleeping in a bed next to another person so you don’t irradiate them. They do the same type of precaution for folks who get treatment for thyroid cancer, and it’s a much lower dose of radiation.
- Am I going to get sick?
- It’s possible. I tolerated the procedure very well. Not everyone tolerates this as well as I did, so do not measure yourself to my experience. I know of one woman who did 4 rounds of PRRT and vomited every single time. Before your treatment, they give you an enzyme infusion to protect your kidneys from radiation. She just didn’t tolerate the enzymes. I don’t know of anyone getting sick to the point of hospitalization, but I can say that you will definitely be tired after therapy, and this will likely go on for months. Be prepared to rest. I worked part-time for a while after PRRT then went back to full-time after about 4 months.
- Should I stay close to hospital the first night after? I live xxx hours away from the hospital?
- I’m not sure what their recommendation is, but if you live that far away I’d say why not? Err on the side of caution.
- How serious is it to stay away from people for 3 days? What about the next 7 days? I have people in my office and we all sit pretty close together. I have a grandson and dog.
- I think it is serious to avoid people for a few days if you can. Again, half-life is 6.6 days for lutetium-177 the active radiation in Lutathera. In Europe, they suggested that when I flew home that I should make sure that no one sitting next to me was a child or pregnant. They said the radiation should not affect my dogs but honestly I don’t know if they’re is enough (or any) research in that. I might still not let my dog sleep in bed with me. Since they kept me hospitalized for a few days, I was flying out like 5 days after my procedure. Is it possible to hybrid and work from home for a few days? I would try to do that if you can.
- What are things I should watch for after wards?
- I think the biggest will be your energy levels. PRRT will likely hit your bone marrow, and you will see your white blood count drop, which could affect your immunity. Especially if you work in office with a lot of people who may or may not be considerate of others and come to work sick. You will likely also see a drop in your hemoglobin, which will be your energy. Mine has not been great since having PRRT the first time in 2016 and I have done a total of 5 rounds of PRRT with different types of radiation. Y90, Lu-177, Lu-177, Y90, Ac-225 is the order mine went in.
- What’s my chances of losing my hair? It already thins on Lanreotide.
- Generally speaking, you shouldn’t, however, since you are already having issues with lanreotide, you might have issues. I know of one other person that lost her hair. But, that is out of the other 25 I know that had PRRT. So, it’s not common but it could happen.
- What’s my chances this is going to help even though octreotide and lanreotide aren’t working completely?
- That’s kind of the million-dollar question, right? I mean, we have trials and we have studies but who stuff works for and who it doesn’t we don’t always know. I was on Sandostatin for years prior to my first PRRT. I have amazing receptors, but PRRT has been always a little sketchy for me. That said, I don’t regret any of the therapies that I have done…which are extensive. I was first diagnosed in 2007, and we didn’t have a lot of treatments available until 2018. My first trip to Europe was at least five years too late but I had no way to get into a trial and didn’t think I could afford the European treatment route. Fortunately, I have a lot of generous friends who helped me with my expenses.
- Some of these questions might seem crazy and you might not be able to answer, and I understand. Just trying to get some info to settle my anxiety.
- No question is crazy. You are going to undergo a medical treatment that involves radiation. I invite you to join the Northwoods NETS mailing list and our support group.
Just as a reminder: Northwoods NETS is a patient-run support group based in Minnesota. We are not doctors so we can only give you information about our experience with our healthcare journeys. It is best that you contact your medical team for medical advice. We have monthly support meetings, some fully online and you are welcome to join us. Visit the events section of our site to see dates and registration information. You can also visit Dawn Marie’s blog about her first PRRT experience in Switzerland.