1. < Neuroendocrine Tumors (NETs)
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Has anyone had cramping pain in left side nearing 3rd PRRT treatment?

Posted by mmar2025 @mmar2025, May 26 2:59pm

I will have my third PRRT treatment next week. All well so far. Had a cramping pain in the left side like a "Charlie Horse" a few days ago. It went away in about five minutes. I had bent over to touch my toes. Sometimes I can feel the inflammation in the side when I move. No other side effects to speak of with the exception of the tiredness. Could it possibly be the inflammation from the tumors dying? Or the PRRT treatment? Has anyone else had this happen to them?

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dbamos1945 | @dbamos1945 | May 29 8:12pm
In reply to @vinnie694 "I have had a pain in my left leg, I just assumed it was a "Charlie..." + (show)
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I have had a pain in my left leg, I just assumed it was a "Charlie horse" it happened a couple of times.. I never really related it to the treatments.. It may have been! After 1 year my MRI is showing the Tumors are still shrinking... and I haven't had any leg cramp in quite some time..

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@vinnie694: I am so happy to learn results of the PRRT treatment has given you back more time and quality of life!
I am celebrating with you, as we unfortunately share NET tumor locations. I assume you are still getting the Lanreotide every 28 days & scheduled MRI Evoist scans to stay vigilant. That is my regimen too and enjoying how great life is. My treatment was June-Dec 2024). Best to you!!!

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vinnie694 | @vinnie694 | May 30 7:12am

Thank you, I am happy to hear that it is still working for you. I did start with Lanreotide but after 2 -3 months switched to Ocreotide (this controlled my Carcinoid hot flashes).. Looks like you're a year ahead of me with the PRRT treatments. I completed mine in May of 2025..And I'll never forget when I was diagnosed, it was Christmas of 2022. I celebrate every day that I've been given with a fuller appreciation of life.. I also wish you the best! Please keep in touch.. Blessed in Saint Augustine Fla..

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tonibowman | @tonibowman | Jun 1 6:40am

I'm right there with you. Third PRRT coming up in July. I do have slight cramping left side occasionally however, after 2nd treatment had huge "Charlie horse" of a gut cramp. Never felt anything like it. Treated for carcinoid crisis with breakthrough Ostreotide and have been given epipens of Ostreotide should I have anything like that after 3rd treatment. Cramp was so bad I sweat profusely and had diarrhea and vomiting. Did subside after 1/2 hour. IZ was not at Mayo when this happened but a large hosital in my hometown. ER contacted oncologist on call who did not give Ostreotide immediately but by then, I was well enough to get my PRRT team involved and thank goodness they communicated with ER.

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mmar2025 | @mmar2025 | Jun 1 1:20pm
In reply to @dbamos1945 "@vinnie694: I am so happy to learn results of the PRRT treatment has given you back..." + (show)
Profile picture for dbamos1945 @dbamos1945

@vinnie694: I am so happy to learn results of the PRRT treatment has given you back more time and quality of life!
I am celebrating with you, as we unfortunately share NET tumor locations. I assume you are still getting the Lanreotide every 28 days & scheduled MRI Evoist scans to stay vigilant. That is my regimen too and enjoying how great life is. My treatment was June-Dec 2024). Best to you!!!

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@dbamos1945 Next session in two days (PRRT) - third session. I will not have scans until it is all over with, according to physician. It is a long day as you know for the treatment. I am hoping when it is all over with I have some time before it starts up again. Thank you for caring.

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kaiulani | @kaiulani | Jun 4 11:17am

Hello All, I’m set to have my 3rd PRRT treatment session at the end of June: amongst other severe pains & headaches, as well as constant crushing fatigue, I’ve had unbearable cramping in the right side of my abdomen since my treatment started in March of 2026 but I’m not being treated for either that or the flushing that is getting increasingly worse now, with the passage of time. I’m hopeful that PRRT will eventually demonstrate some benefit for me because this disease has been really rough on me. If I had all this to do over again, I would never have started with any treatment whatsoever, not even the Whipple surgery (31 October 2023), as I think having taken medical advice, I’ve only severely decreased my quality of life: I think that, in my case, letting the disease take it’s natural course would’ve been the best option FOR ME. I wonder, has anybody else felt the same way? Kind Regards, Carol in Canada

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dbamos1945 | @dbamos1945 | Jun 4 3:47pm
In reply to @kaiulani "Hello All, I’m set to have my 3rd PRRT treatment session at the end of June:..." + (show)
Profile picture for kaiulani @kaiulani

Hello All, I’m set to have my 3rd PRRT treatment session at the end of June: amongst other severe pains & headaches, as well as constant crushing fatigue, I’ve had unbearable cramping in the right side of my abdomen since my treatment started in March of 2026 but I’m not being treated for either that or the flushing that is getting increasingly worse now, with the passage of time. I’m hopeful that PRRT will eventually demonstrate some benefit for me because this disease has been really rough on me. If I had all this to do over again, I would never have started with any treatment whatsoever, not even the Whipple surgery (31 October 2023), as I think having taken medical advice, I’ve only severely decreased my quality of life: I think that, in my case, letting the disease take it’s natural course would’ve been the best option FOR ME. I wonder, has anybody else felt the same way? Kind Regards, Carol in Canada

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@kaiulani: after the Lutathera PRRT session are you getting the Lanreotide shot within a couple days? Speak with your Oncologist regarding flushing and overall symptoms, perhaps your body just needs more Lanreotide to control symptoms?
PRRT can be a great treatment if you can deal with some discomfort: shrinkage of tumors with some completely not scannable… but STABLE tumors are a WIN! Just my 2 cents.

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vinnie694 | @vinnie694 | Jun 5 7:25am
In reply to @dbamos1945 "@kaiulani: after the Lutathera PRRT session are you getting the Lanreotide shot within a couple days?..." + (show)
Profile picture for dbamos1945 @dbamos1945

@kaiulani: after the Lutathera PRRT session are you getting the Lanreotide shot within a couple days? Speak with your Oncologist regarding flushing and overall symptoms, perhaps your body just needs more Lanreotide to control symptoms?
PRRT can be a great treatment if you can deal with some discomfort: shrinkage of tumors with some completely not scannable… but STABLE tumors are a WIN! Just my 2 cents.

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@dbamos1945 I received my Ocreotide shots the same day as the PRRT treatments..

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sophiarose | @sophiarose | Jun 5 8:34am
In reply to @kaiulani "Hello All, I’m set to have my 3rd PRRT treatment session at the end of June:..." + (show)
Profile picture for kaiulani @kaiulani

Hello All, I’m set to have my 3rd PRRT treatment session at the end of June: amongst other severe pains & headaches, as well as constant crushing fatigue, I’ve had unbearable cramping in the right side of my abdomen since my treatment started in March of 2026 but I’m not being treated for either that or the flushing that is getting increasingly worse now, with the passage of time. I’m hopeful that PRRT will eventually demonstrate some benefit for me because this disease has been really rough on me. If I had all this to do over again, I would never have started with any treatment whatsoever, not even the Whipple surgery (31 October 2023), as I think having taken medical advice, I’ve only severely decreased my quality of life: I think that, in my case, letting the disease take it’s natural course would’ve been the best option FOR ME. I wonder, has anybody else felt the same way? Kind Regards, Carol in Canada

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@kaiulani Carol
Between my 2nd & 3rd treatment I had to take a break I had a bunch of MRIs and an echo cardiogram and the results led to inflammation I was put on steroids for 10 days and the major dizzy spells I was having went away
I started my 3rd treatment 2 weeks late but continued to finish all 4 treatments my last treatment was in November of 2024 and I have been stable since
I was given octreotide right after my treatment to control the flushing and diarrhea and after my treatment was complete I have continued to get octreotide every 28
I was told that PRRT can cause inflammation maybe that is what you are experiencing
Unfortunately everything has side effects I have had my share
Many of times when I am having a really bad day I ask myself
WHY????
I think we all have
But like all of us our need to go on takes over and we get the strength to move forward
Don’t let it win
As my dad always said forget yesterday you can’t change it concentrate on today and make a better tomorrow
You got this!!
Be well

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