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sophiarose avatar

PRRT side effects and results

Neuroendocrine Tumors (NETs) | Last Active: Jul 2 4:04pm | Replies (74)
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Profile picture for itsamarathon2025 @itsamarathon2025

You’re one treatment ahead of me. I have another Scan June 30th… and the another treatment July 15. My treatments are now 7 weeks apart and 6 total as I mentioned. If you aren’t having many symptoms I think it’s a good sign you’re responding well. I’ve had no issues on treatment day except treatment 3 the other day was more intense. My face got pretty warm and numb and it lasted a few hours instead of 45 min. Like 1 & 2. I also had some chills for about 30 min but it all went away. Slept pretty much the next day and felt normal day 3 and 4 after. I have no pain and have never had pain accept one the beginning when I needed a stent out in the main hepatic duct. How about you? Do you have a stent? Experience any more intensity on PRRT round 3 or 4. I appreciate your feedback.

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Replies to "You’re one treatment ahead of me. I have another Scan June 30th… and the another treatment..."
sophiarose | @sophiarose | May 25 6:40pm

My treatments were different I had 4 and they were 8 weeks apart
Except for after my 2nd I had a lot of ongoing dizzy spells
So they did a lot of tests and I continued again for the last 2 treatments
The fatigue was the worst
My last scans came back good no new growth and some shrinkage I get rescanned in July
Hopefully it continues
I am on Ocreotide every 28 days and do have some side effects from that but I am moving ahead
Please keep me posted
Good luck

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vinnie694 | @vinnie694 | May 26 6:22am

I do not have a stent, the PRRT treatment I received was called Lutathera, all 4 treatments went well. I first receive an injection to help with nausea, then they start an amino acid drip in one arm, to protect the kidneys and other vital organs. Then after 30-40 minutes after they start the Lutathera drip in the other arm, usually about 20 minutes, after they continue the amino acid drip for another 2 1/2 hours. The only side effects I ever had was tired for a few days. But an hour after the treatment I receive my Ocreotide shots, (for carcinoid syndrome)which I get a severe respiratory reaction to, so I take a double dose of Benadryl before I get the shots, that also makes me tired.. 🥱 .. what is the name of the PRRT treatment you receive?

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