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

I have had three cycles, so far, of Lutathera, starting in December 2022. and have my fourth at the end of May.
I was originally diagnosed in Jan 2020. I have an unknown primary and tumors in my liver, pancreas, adrenal gland, lungs, parotid gland, and bones. Based on biopsies, i actually have tumors of all different grades, but mostly grade 2 and 3. At that time, based on results of my PET DOTATATE scan, I was not a good candidate for Lutathera treatment. Many of my tumors were just not soaking up the tracer well enough for it to be effective. So I had two cycles of CAPTEM, which didn’t work at all. I had significant progression. Over the next two years, I had 10 rounds of FOLFIRINOX, which stabilized my cancer and actually shrunk some tumors, and then 50 rounds of FOLFIRI (had to stop oxaliplatin due to neuropathy). I was stable until September 2022. I had another PET DOTATATE scan at that time, and my tumors were soaking up significantly more tracer than they did back in 2020, which made me a good candidate for Lutathera. I also get a sandostatin shot with every treatment but no mid-cycle shot.

sandy23 search on 'PRRT' here in Connect; there are several posts about patients experiences with PRRT and NETS. I finished a treatment of 4 cycles a little over a year ago with very good results and few side effects. I think I have posted with details a couple of times. I think you will find the string helpful. Hope it goes well for your husband and you.

Just update my treatment plan. It will be Lutathera (lutetium Lu 177) for initial 4 doses, which has been approved by my insurance. The first dose will be injected on June 28, 2023.

Hi, my hubs starts his Lutathera on June 21st. It'll be interesting to compare notes. Did they give you the info about how long it'll take and precautions, etc? I was told it would be 6 to 8 hours. In your own room with a bathroom to use hourly (keep the kidneys healthy, big concern with this treatment). And I was told this med comes in from either Italy or NJ and sometimes the patient has to wait for it bc they only send it out so many hours prior to giving it to the patient. They also give nausea meds and amnioacids, I think, again to help pricy the kidneys. Please let us know how you made out and I'll do the same for my hubs.

I did receive the Lutathera treatment plan, instruction, procedure and post-care sheet during consultation. Actually I will start my treatment on June 7 from 8 AM to 1 PM (6 hours) due to other cancellation, pretty similar to what you described. I have also been prescribed nausea medicine just in case of use at home. Blood work should be done before each treatment. I will share my experience of the treatment.

Here is the details of treatment steps of the day.

Well that is more foreboding. We haven't received written instructions. It appears it's less time than we were told. However, she did say 6 to 8 hours with a variance. So I'm guessing it's their TIME she's referring to.

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!

Your experience has made me less nervous. Thanks so much!

@sandy23 , I have written previously about my experience at Mayo Phoenix in 2021 with the Lutathera. But thought I’d add a few more comments. First, I cannot say enough good about them. They were very knowledgeable, efficient, and patient-oriented. They gave me a bunch of info, answered all my questions, and were quick to reply to anything I sent through the portal.
A day was usually from 7:30-2:30 or so, then I’d go back to the motel and either take a nap or walk before going out to dinner with one of my grown sons. I had a very unusual reaction to the first treatment that neither the docs there or here had ever heard of. Three days after the treatment I got violently sick, had vertigo and passed out briefly. Not telling you this to scare you as again, no one ever heard of this happening. Because of this they reduced the dosage to half and that never happened again. Everyone is different and only you all and your doctors can decide what’s the best course for you. For me they felt that decreasing the dosage would still give me the treatment I needed. Also, they had me take .5 of Ativan + 8 mg Zofran right after my treatment for 24-48 hours afterwards and it worked great in controlling the nausea. So, there’s all kinds of ways to help manage any side effects. Other than that, I would have some fatigue and just generally feel crappy for a couple of days, but then was out and about and on with my life.
I am 73 years old with a long not so good health history, but I would not hesitate to do it again if need be.
Wishing your husband the best of luck. I do believe all will go well.