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Tomorrow I am going for my 3rd lutathera treatment. If we could do something over the phone or video yes. And in eight weeks I'll be going for my fourth treatment. My biggest concern is the effects of the radiation on my body and how I'm feeling. I get my information online however I would prefer to speak to a patient who is suffering these eight weeks between treatments. I just want to know what their symptoms are how they're feeling. Because my doctors are not telling me or referring me to anyone who's had this treatment. I know what I have it's stage 4 I'm aware of that. What is the long range effects of the radiation? How do I know that the treatment is actually working. I'm told I can't have another PET scan unless I have four treatments because the insurance might not pay for it. I sound like I'm all over the place but it's basically how I feel 8 weeks after every treatment.

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Replies to "Tomorrow I am going for my 3rd lutathera treatment. If we could do something over the..."

@shirleyslominski PRRT was the one treatment I had with no negative effects. Got sick on chemotherapy, high fever for days after hepatic embolization, side effects from all oral meds, most recently cabometyx. Surgery was disabling for some time and I still have some stiffness and pain. On PRRT between treatments I could almost forget I had cancer, and for several months later. Of course the symptoms did return.
The way I felt was the main assurance that the treatment was beneficial and lab readings and scans confirmed this. They didn’t show me before scans, which is just as well as they were bad. On after scans tumors were barely visible. They continued shrinking after treatment although as I said symptoms reappeared (with insulinoma a very small one can make lots of insulin).
The radiation didn’t really concern me as the doctor explained how the Lutathera bonded to the tumor cell receptors sites and targeted them, minimizing effects elsewhere. Used to visualize it destroying the tumor cells DNA so I didn’t mind the treatment. Also the staff at U of Michigan was excellent and very helpful.
It’s expensive and even with coverage I still owe them money. I am paying it down so that maybe if needed I can get more treatment. (I had four sessions, I hear some patients got six or even eight. Maybe that’s too much radiation for the kidneys though.)