PRRT Treatment

Posted by rkklinger @rkklinger, May 29 10:35am

My husband is having PRRT with Lutathera on Tuesday. After reading the information sent from Mayo, he is a little concerned about side effects. What should we expect after the treatment Tuesday afternoon? Are there immediate side effects? Any thoughts will be appreciated.

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@rkklinger: congrats to you and your husband recommended to begin PRRT treatment I assume for Neuroendocrine Tumors. I was lucky to receive 6mo treatment of 4 Lutathera drug with terrific results (June-Dec 2024).
The side effects for me was fatigue and occasional twinges or stomach discomfort (my primary is small intestine with liver metastases) -just mild changes I dealt with by thinking the Lutathera was attacking my nasty cancer cells as I thought positively. I napped often and made the best of quiet days, combined with other days I continued with my exercise routine and daily life. To answer your question on what to expect after the treatment: I was tired and went to bed early with no pain, no nausea, no side effects!
Lutathera has been a life-changer for me by “setting my clock back. - maybe 4+ yrs on the cancer prognosis time frame”. I am grateful and am enjoying a great quality of life!
I recall the concern of side effects and it is important to be comfortable with your treatment decision. I researched for months. I am thinking all positive responses for your husband and that you both will feel peace and comfort. Best…. Bette. dbamos1945

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I had standard 4-infusion course of Lutathera back in '23. As with dbamos1945, my side effects were relatively minimal all things considered. Some fatigue that, as I recall, lasted about a week or so after each infusion. I didn't worry about that but, rather, gave myself permission to just sleep in and take things easy for a while. I did have some slight loss of appetite but that would typically go away within a couple of days and honestly, it wasn't that severe at all (besides, I can stand to lose a few pounds!) I did have some pain mostly centered on my right side where most of my NETs are. I figured, if we're killin' tumors, I'll gladly put up with a little bit of discomfort for a while.

Having a physical sciences (astronomy) background, I nerded out and bought myself an inexpensive geiger-counter. I took before & after readings to watch my radioactivity peak and then taper off in the weeks following each infusion. After doing some reading, I also found out that the Lu in Lutathera comes from the element Lutetium ... specifically the 6-day half-life radioactive isotope of Lutetium -- Lu 177 -- that provides the radioactivity that "cooks" the tumors from the inside-out (the tumors absorb the Lutetium-tagged DOTATATE molecule thus absorbing the radioactivity.) Also, much of the Lutetium that is found in the Earth's crust was actually seeded there by asteroids & meteoroids which I found to be very cool and coincidental given my astronomy background. Yup, nerding out again. 🙂

Anyway, back to topic ... I experienced some headaches and abdominal pain, as well, but I attributed those more to the Octreotide injections that would follow each infusion than the Lutathera since I get those side effects even now after each Octreotide injection. Like dbamos1945, whatever side effects your husband experiences (they're likely to be minimal), you both should figure its worth it when you think about what it's doing to your husband's tumors. It's been nearly 3 years now for me and my tumors have shown essentially no or extremely little growth since the Lutathera therapy.

In 2004 when I was first diagnosed with Carcinoid (NETs) I was told there was essentially no treatment other than surgery but that some patients live 10 years or maybe even more depending the extent of the spread at diagnosis. In the 22 years since, some remarkable advances have been made and that 10 years out seems stay that way. I've no doubt that you guys will sail through your husband's treatment, look back on it later, and think, "Well, that wasn't really anything at all to worry about!"

Good luck and let us know how it's going!

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I completed my Lutathera treatments In May of 2025, so far my 2 follow up MRI's are still showing that the Tumors are reacting to the treatment They are still reducing.. Same as dbamos1945 the clock has been set back, the larger tumors are smaller than when I was diagnosed and the smaller ones though they are still there are barely visible.. Immediate reaction usually is nausea which I was given medication during the process to minimize.. I did not experience any nausea during the process, I did have a little nausea for a few days after and an increase in fatigue.Hope all turns out well for your husband..

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Profile picture for frankwc @frankwc

I had standard 4-infusion course of Lutathera back in '23. As with dbamos1945, my side effects were relatively minimal all things considered. Some fatigue that, as I recall, lasted about a week or so after each infusion. I didn't worry about that but, rather, gave myself permission to just sleep in and take things easy for a while. I did have some slight loss of appetite but that would typically go away within a couple of days and honestly, it wasn't that severe at all (besides, I can stand to lose a few pounds!) I did have some pain mostly centered on my right side where most of my NETs are. I figured, if we're killin' tumors, I'll gladly put up with a little bit of discomfort for a while.

Having a physical sciences (astronomy) background, I nerded out and bought myself an inexpensive geiger-counter. I took before & after readings to watch my radioactivity peak and then taper off in the weeks following each infusion. After doing some reading, I also found out that the Lu in Lutathera comes from the element Lutetium ... specifically the 6-day half-life radioactive isotope of Lutetium -- Lu 177 -- that provides the radioactivity that "cooks" the tumors from the inside-out (the tumors absorb the Lutetium-tagged DOTATATE molecule thus absorbing the radioactivity.) Also, much of the Lutetium that is found in the Earth's crust was actually seeded there by asteroids & meteoroids which I found to be very cool and coincidental given my astronomy background. Yup, nerding out again. 🙂

Anyway, back to topic ... I experienced some headaches and abdominal pain, as well, but I attributed those more to the Octreotide injections that would follow each infusion than the Lutathera since I get those side effects even now after each Octreotide injection. Like dbamos1945, whatever side effects your husband experiences (they're likely to be minimal), you both should figure its worth it when you think about what it's doing to your husband's tumors. It's been nearly 3 years now for me and my tumors have shown essentially no or extremely little growth since the Lutathera therapy.

In 2004 when I was first diagnosed with Carcinoid (NETs) I was told there was essentially no treatment other than surgery but that some patients live 10 years or maybe even more depending the extent of the spread at diagnosis. In the 22 years since, some remarkable advances have been made and that 10 years out seems stay that way. I've no doubt that you guys will sail through your husband's treatment, look back on it later, and think, "Well, that wasn't really anything at all to worry about!"

Good luck and let us know how it's going!

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@frankwc: I mimicked your experience in many ways; but learned much from your post about Lutathera and its usage. Thanks for enlightening me!
Like you, I hope that other NET patients explore this treatment thoroughly before being overly concerned about side effects. The Nuc Med crew know their stuff and take excellent vigilance of us during treatment. I trusted them thoroughly and am continually grateful for the opportunity to receive this treatment when my body needed it most! Fellow Nerd 🙂

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Profile picture for dbamos1945 @dbamos1945

@frankwc: I mimicked your experience in many ways; but learned much from your post about Lutathera and its usage. Thanks for enlightening me!
Like you, I hope that other NET patients explore this treatment thoroughly before being overly concerned about side effects. The Nuc Med crew know their stuff and take excellent vigilance of us during treatment. I trusted them thoroughly and am continually grateful for the opportunity to receive this treatment when my body needed it most! Fellow Nerd 🙂

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I had prrt nearly 3 years ago. It shrunk my tumours in total by about 20% and they are still stable so well worth it. I just found myself getting tired for about 2 days after each treatment. The actual prrt is painless and only takes about 1 hour all in. Cannot recommend it high enough.

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I completed PRRT in May 2026. The 1st two treatments were very easy. Just a couple days of fatigue, no nausea. The third and 4th were more difficult. I didn’t get nauseous during the first 3 treatments, but did on the 4th. I didn’t take any nausea drugs after any of the treatments as I thought the fatigue, headache and mild nausea would go away quickly. However, after 3 and 4, it stayed with me 10 days. In hindsight, I’d take them daily at least for a week after each treatment. I don’t have a PET scan till August, but I am definitely seeing benefits. After battling carcinoid syndrome for over 10 years, I am no longer taking Imodium twice daily and stopped my Ocreotide injections after the second radiation treatment. I feel better now than I have in a long time, so I am very optimistic that it is working.

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Comments above are very informative and constructive -
After my wife completed 4 PRRT sessions in 2023 and recently completed #5 (Feb) and #6 (April) - fatigue was / is the most noticeable side effect. NET patients are referred to as "zebras" - each persons' experience will be somewhat different.
We have been "schooled" in the expectation that PRRT should result in "stability" ... shrinkage is a huge benefit.

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As with other comments made, I agree with all; although 1 commenter shared his/her less positively experience with rounds 3 and 4 (nausea, etc.). My PRRT experience in 2024 was smooth sailing because I didn't care about the fatigue because I like to nap! Overall, I experienced no other 'negative' effects.

As for the PRRT results: Initial diagnosis in 2020: Stage 4, grade 3 SB-NETs with mets to liver and mesentary with a 2-year OS prognosis. I quickly chose to have SB resection surgery and liver debulking the same year. PRRT in 2024 was the icing on the cake! Since PRRT, many tumors have died, some have significantly reduced in size and presently my condition is holding at "stable".

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Eat breakfast. Not just coffee and a doughnut. The nurse said it was a wise thing to do and so far I have had no nausea/vomiting at all. I have had two treatments so far starting the first week of February 2026, and my next is on Wednesday, June 3rd. There were no real consequences, other than constipation. It was difficult to fix, but I got there. And, of course, the ongoing tiredness. I notice other comments indicate they only have a few days or maybe a week of tiredness, but I am not so lucky. I hope that your husband is lucky in that respect. Stay positive.

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Profile picture for frankwc @frankwc

I had standard 4-infusion course of Lutathera back in '23. As with dbamos1945, my side effects were relatively minimal all things considered. Some fatigue that, as I recall, lasted about a week or so after each infusion. I didn't worry about that but, rather, gave myself permission to just sleep in and take things easy for a while. I did have some slight loss of appetite but that would typically go away within a couple of days and honestly, it wasn't that severe at all (besides, I can stand to lose a few pounds!) I did have some pain mostly centered on my right side where most of my NETs are. I figured, if we're killin' tumors, I'll gladly put up with a little bit of discomfort for a while.

Having a physical sciences (astronomy) background, I nerded out and bought myself an inexpensive geiger-counter. I took before & after readings to watch my radioactivity peak and then taper off in the weeks following each infusion. After doing some reading, I also found out that the Lu in Lutathera comes from the element Lutetium ... specifically the 6-day half-life radioactive isotope of Lutetium -- Lu 177 -- that provides the radioactivity that "cooks" the tumors from the inside-out (the tumors absorb the Lutetium-tagged DOTATATE molecule thus absorbing the radioactivity.) Also, much of the Lutetium that is found in the Earth's crust was actually seeded there by asteroids & meteoroids which I found to be very cool and coincidental given my astronomy background. Yup, nerding out again. 🙂

Anyway, back to topic ... I experienced some headaches and abdominal pain, as well, but I attributed those more to the Octreotide injections that would follow each infusion than the Lutathera since I get those side effects even now after each Octreotide injection. Like dbamos1945, whatever side effects your husband experiences (they're likely to be minimal), you both should figure its worth it when you think about what it's doing to your husband's tumors. It's been nearly 3 years now for me and my tumors have shown essentially no or extremely little growth since the Lutathera therapy.

In 2004 when I was first diagnosed with Carcinoid (NETs) I was told there was essentially no treatment other than surgery but that some patients live 10 years or maybe even more depending the extent of the spread at diagnosis. In the 22 years since, some remarkable advances have been made and that 10 years out seems stay that way. I've no doubt that you guys will sail through your husband's treatment, look back on it later, and think, "Well, that wasn't really anything at all to worry about!"

Good luck and let us know how it's going!

Jump to this post

@frankwc I have to comment on the Geiger counter! I had purchased one also, and about 4-5 days after the first PRRT treatment my reading was 110,000CPM (100CPM or below is normal). Enough to scare the living daylights out of me. I would put it on different parts of my body, i.e., liver, pancreas, upper chest and back. The highest readings, of course, were from the pancreas and liver, where my NETS are. I realize that the reading is basically the "smoke from the fire" now. And, as time has gone on, the readings have dropped considerably. For the first two PRRT treatments, it took until the last two weeks for the Geiger counter to stop making noise or go below 100CPM. I will have to see what this third treatment coming up on Wednesday will show. It should be interesting.

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