← Return to 4 treatment options from my doctor, which one should I start with?

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@sandy23

Hi Jlu,
So how was your 1st Lutathera treatment? Any side affects? My hubs had his first one on June 21. The only side affects he's had has been some diarrhea but that's been worse since his debulking of the liver surgery where they took out his gallbladder.... so that could be a residual from that. He was a little more tired but that's about it....or that's all I've been told anyway. The biggest complaint/concern is that we've gotten a couple different safety procedures which is different from the Lutathera safety precautions. So, we resolved it by buying a geiger counter. Under $100 and felt it was well worth it. The drug stays in your system for 30 days..... everyone was on board with that. MY concern was when can he sleep in our bed, use our bathroom etc so that I would be safe? We decided to use the geiger counter as a guide for our answers. I'm sure we're being overly cautious but I have my own health issues and I do realize that this drug leaves your body rather quickly after treatment, however, what we were told AND we discovered is that the drug attaches to the NETS and stays there killing the cells. My hubs cancer is primarily in his liver but the Nuclear medicine dr said that the thyroid also soaks up the Lutathera. With that info and with what I researched using the geiger counter, we find that he sets off the geiger counter at high levels for approx 3 weeks within about 5ft radius. Going into the end of the 3rd week I can get closer. We did this bc our house is set up to where when we watch TV, eat or even ride in a car together we are within 3 ft of each other. We felt 5ft was a good starting point since that was the initial precaution discussion we had with the Nuclear medicine Dr. He also went to the extent of buying a lead apron which came with a thyroid protector as well. Maybe it's a bit overkill but I feel much better knowing when he is more radioactive. And with getting several different days as to how long to use another bathroom and sleep in seperate rooms we decided proof was what we'd go with. So week 3 he was back in our bed but we put a pillow with the lead vest over it to seperate us since I'm on his right side where the liver is. Thankfully we have a king bed. We checked daily for the readings and by end of week 3 I could get within 3 ft of him for longer periods of time. I might add, we also checked his clothes, the toilet after having just used it, and his bedding since he still has night sweats and none showed any reading on the geiger counter. I still used the precautions of washing his clothes seperate and we didn't use the same bathroom and he flushed twice and sat vs standing to go the 1st week in. On a side note... maybe too much TMI but the precautions discharge paper stated to use protection 6 months AFTER the LAST treatment. Understandably, since the radiation comes out of the body through any bodily fluids. Just an FYI for you......off to the store ya go like a young kid again buying condoms...oye' .

I hope you're treatment went well and look forward to hearing back from you.

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Replies to "Hi Jlu, So how was your 1st Lutathera treatment? Any side affects? My hubs had his..."

Hi Sandy,
Glad to hear back from you and know everything went well. I only had very minor side effects after the 1st treatment, like feeling tired (many naps during a day) and reduced appetite, that's it. I have had my own bedroom and bathroom and tried to stay 3 feet away from my family members for two weeks. I think you did great job for the safety caution. I should have had that counter too and will go get it before my next treatment (Aug 3).

How was his liver debulking surgery? How long ago was it? What grade is he and what was the primary? Thanks.

Also, when was he diagnosed? Thanks.