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

Hi jlu & sandy: I completed PRRT therapy (lutathera) a little over a year ago at Mayo, Arizona so can respond with what to expect from that perspective. It is a long (about 5-6 hours total) day, but in my case not painful or difficult. The procedure starts with 2 IV's (one in each arm) and a lot of fluids. You get an anti-nausea med intravenously first (and they continue to check in with you that you have no nausea--I did not have any). Once that is done, they begin the Peptide solution (amino acids)--in my case I think that went on for a couple of hours prior to the lutathera infusion. That infusion generally took about 45 minutes and they are very cautious during that phase. Once that is done, you have about another 2 hours of the peptide solution--they are flushing a lot of fluid thru you to help protect the kidneys, etc. Once all the fluids are done, they measure the amount of radiation you are giving off and once that is low enough (it always was for me at the end of the fluids infusion) they remove the IV's and you are done. The total process never was longer than 6 hours and I think it was closer to 5 a couple of times. There was a nurse assigned to me the whole time I was there and the radiation therapists were with you during the Lutathera infusion and visited before and after. You have your own bathroom and you definitely need to pee with all that fluid! They always brought me snacks and water/drinks after the Lutathera which was nice. You can nap or read during the day and the staff chat with you too. I was really tired after my first treatment, less so with each one after that--and I think that varies for each patient. But I would plan on lots of napping after your first one, just in case. They will give you distancing protocols for the first 3 days after treatment but encouraged me to walk, etc. and I did when not napping! I also found that I was more comfortable eating certain foods rather than others the first couple of days, but I did not have any nausea--just wasn't very hungry. Everything got easier with each treatment--so stay patient and positive. It was worth it for me and I would do it again. Good luck both!

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Finished my first treatment today from 8 am to 1 pm. All side effects didn't happened to me surprisingly. They may take a time. Will see.

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Thank you so much for posting your experience! Very helpful.

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I only have one type of cancer (atypical) spreading multiple bone places. My guess would be cancers in some places may not respond to Luathera. I don't know why. I could ask my Dr for details at next time visit.

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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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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.

Jump to this post

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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