Update: Lutethera treatment is over

I just had my first shot of the PRRT at the same day/time of Dr. Strosberg's talk (how convenient) and my experience was quite different from sandy23's husband. I wonder if he had a stronger dose (mine was 20%). No side affects and I feel good. 4.5 hrs. in the hospital, 30 min. of the PRRT injection. We have to remember that each of us could experience the results differently. Good luck to all of us while dealing with this (not so rare anymore) cancer.

Hello @lindaamos,

I just received a notification about a podcast about PRRT treatments that you might be interested in. It was presented today but here is a link to the recording:
https://www.lacnets.org/jan2024

I can’t have debunking or Lithotrypsy as my liver has over 100 tumors per estimate. Fortunately, my child bearing years have long since passed, my kids are grown and gone . I plan to isolate myself from my husband and fur babies for at least 3 days . I want to stay in the RV but my hubby says no so I’ll stay in the spare bedroom. I’ve been through chemo and radiation for breast cancer so I have a pretty good idea of what’s ahead . My oncologist gave me a book on the treatment also . I bought a wig so I’m ready if I need it . I’m looking at it as 3 days by myself reading and watching TV doesn’t seem so bad !😂 Thank you again for your time !

I'm glad that my description of the "day in the life of Lutethera " will help you. My question to you is..... if your tumors have spread have they suggested or recommended liver "debulking"? If you'll read one of my earlier posts my hubs had liver debulking due to the cancer having spread and grown. Essentially the same thing, the shots stopped working. Since the liver surgery wasn't as successful as hoped that's when they suggested the Lutethera. Please do your research on Lutethera. If you Google it the makers of it.... possibly Novartis.. can't remember but anyway there is heat info about it. The treatment, the dude affects, precautions etc. I will say, being that you're a woman there are more precautions for women, especially if you're of child bearing years. So with that, you'll need to consider all of the possible down sides to the treatment as a woman. No more kids in our future but if that's something in your future really do your research. In going thrive the treatment let the Dr know any and all symtoms/side affects. This is a fairly new treatment in the US and they are still recording how patients are doing. Good luck to you as you go through this. Oh and in my post I my phone changed something important. Bring FOOD and something to drink. Preferably water or Gatorade. You can bring snacks etc. You'll be there the entire day. I made sure he had something mild in case he wasn't feeling good. I brought some toast with jelly, applesauce, crackers and some cooked chicken, chips. And he wanted a peanut butter and jelly sandwich. We went prepared with this to do, and eat and drink. Wear comfy, easy on/off clothes. Remember you'll have 2 IVs in and have to go to the bathroom hourly. Also, it's good to go with someone. Just in case you're not up to driving. That's the other thing. He got really tired after we got home and did about 3 weeks afterwards with bouts of extreme tiredness, weakness and lightheadedness. But those were short and quit where laying down helped. The sun was a BIG factor. I don't recommend going in the sun for any length of time for about 3 weeks. Normal in and out, to and from work. I would also not recommend going TO work for at least 2 weeks. You'll be radioactive and get tired easily. Again they say 3 days. We aired on the side of caution as my hubs works with quite a bit of young, and some pregnant people. The sun was hard on him. And quick.
So try to limit your exposure. I'm not saying stay in the entire time just don't go out to a park and sit in the direct sun. A hat won't make a difference. It's the sunshine and the heart. Since you'll be going into June keep in mind that with every treatment the dude affects last longer and are more intense. I'm not trying to scare you bc all of the above things were easy to deal with. They were new to him so with every new one he realized he had a few changes to make. I'm just trying to give you a heads up so you don't find out like he did. He went outside to work in the garage in Aug or sept and came in the house really quick and flopped down on the couch and fell asleep. After he woke up he said he got overheated and lightheaded. Luckily he felt it right away and was able to lay down quickly. Keep in mind you may not have any symtoms at all. These are just his experiences, and honestly the were mild in comparison with other treatments for other cancer. He is very lucky he wasn't sick and in bed. Good luck to you and let us know how you do through all this.

No his appetite was not affected. I forget to mention that his nights sweats are back. And let me clarify his hair was "greasy" in a weird feeling way. My phone made a lot of typos and as much as I try to correct I missed plenty apparently.

So, no appetite issues or weight loss. He seems to have a cast iron stomach. He still has quite a bit of diarrhea but has always had it since the shots and most recently more often while the tumors started growing and spreading.

We are looking forward to the scan but it was anticipated to occur in the late spring or early summer. Giving it time to have full affect of the treatment. In the back if my mind I wonder if the Oncologist is concerned that there's still growth possibly in his brain since he had the memory loss. But I'm hoping that's MY brain on over kill.