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Update: Lutethera treatment is over

Neuroendocrine Tumors (NETs) | Last Active: Feb 21 1:13pm | Replies (25)

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@lindaamos

Thank you so much for the information. I’ll start Lutethera infusion on February 6th . I wish is was sooner as the monthly injection has stopped working and my numerous liver and pancreatic tumors are growing . Reading your post put me at ease !

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Replies to "Thank you so much for the information. I’ll start Lutethera infusion on February 6th . I..."

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.