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!

@kjstein Hello @kjstein: Thank you for sharing your experience with Lutathera and what to expect, including your specific reactions. Hearing firsthand accounts like yours is incredibly helpful as I prepare for my own treatment.

I have lung cancer with secondary bone metastasis, including tumors on the right side where my middle and lower lung lobes were previously removed. After several PET scans using copper dotatate, which showed uptake in all of my tumors, I was approved to begin Lutathera (PRRT) treatment.

As a 100% disabled American veteran, I had to go through the process of getting this treatment authorized through the VA, so reaching this point has been a significant step. My first treatment is scheduled for Friday, March 27, 2026.

I have been living with cancer since February 14, 2024, and have been receiving monthly treatments of Zometa (IV for bone strengthening) and Lanreotide (a long-acting somatostatin analog injection).

I remain hopeful and prayerful that I will be among those who respond well to this therapy—that it will shrink or eliminate tumors and help reduce the pain I’m experiencing.

Thank you again for taking the time to share your journey—it truly makes a difference for those of us walking a similar path.

@kjstein Hello @kjstein: Thank you for sharing your experience with Lutathera and what to expect, including your specific reactions. Hearing firsthand accounts like yours is incredibly helpful as I prepare for my own treatment.

I have lung cancer with secondary bone metastasis, including tumors on the right side where my middle and lower lung lobes were previously removed. After several PET scans using copper dotatate, which showed uptake in all of my tumors, I was approved to begin Lutathera (PRRT) treatment.

As a 100% disabled American veteran, I had to go through the process of getting this treatment authorized through the VA, so reaching this point has been a significant step. My first treatment is scheduled for Friday, March 27, 2026.

I have been living with cancer since February 14, 2024, and have been receiving monthly treatments of Zometa (IV for bone strengthening) and Lanreotide (a long-acting somatostatin analog injection).

I remain hopeful and prayerful that I will be among those who respond well to this therapy—that it will shrink or eliminate tumors and help reduce the pain I’m experiencing.

Thank you again for taking the time to share your journey—it truly makes a difference for those of us walking a similar path.

@kjstein Hello @kjstein: Thank you for sharing your experience with Lutathera and what to expect, including your specific reactions. Hearing firsthand accounts like yours is incredibly helpful as I prepare for my own treatment.

I have lung cancer with secondary bone metastasis, including tumors on the right side where my middle and lower lung lobes were previously removed. After several PET scans using copper dotatate, which showed uptake in all of my tumors, I was approved to begin Lutathera (PRRT) treatment.

As a 100% disabled American veteran, I had to go through the process of getting this treatment authorized through the VA, so reaching this point has been a significant step. My first treatment is scheduled for Friday, March 27, 2026.

I have been living with cancer since February 14, 2024, and have been receiving monthly treatments of Zometa (IV for bone strengthening) and Lanreotide (a long-acting somatostatin analog injection).

I remain hopeful and prayerful that I will be among those who respond well to this therapy—that it will shrink or eliminate tumors and help reduce the pain I’m experiencing.

Thank you again for taking the time to share your journey—it truly makes a difference for those of us walking a similar path.

Thank you so much @vinnie694, I truly appreciate your words of encouragement. I will post once I am in my three day radiation recovery.

Since 2018 I have small bowel NET/carcinoid, met to the liver. Surgery removed the primary tumor in 2018 & we've been treating the liver tumors to slow progression b/c there are too many to remove by surgery. In my opinion and past experience:
Octreotide will be the most conservative approach & least side effects. Effective, minimal progression. Next therapy was Everolimus.
Everolimus: My side effects were minimal. Effective, minimal progression. Next on was PRRT.
Lutathera/PRRT. The most effective of all my treatments. Almost 2 years to the day of no progression at all. I consider it the best of all. 4 treatments every 8 weeks. A little rough while the IV is happening but no significant side effects afterwards.
I am still on monthly Octreotide and have been since 2018. It started out as treatment for growth. Now it's primarily for symptom control. Now they want me to take Cabometyx.