1. < Neuroendocrine Tumors (NETs)

PRRT side effects and results

Posted by sophiarose @sophiarose, Jul 20, 2024

After my 2nd PRRT treatment I started having out of control erratic BP and Pulse also Heart skipping beats. I can’t touch my head or temples without pain it feels like my head is in a vise grip
I also did MRI of abdomen and pelvis tumors are still growing and multiplying
Has anyone else had this happen
Thank you

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sophiarose | @sophiarose | May 26 3:32pm
In reply to @hopeful33250 "It is so good to hear from you, @sophiarose. I'm glad to hear of the success..." + (show)
@hopeful33250

It is so good to hear from you, @sophiarose. I'm glad to hear of the success you have had from the PRRT treatments. I'm sure you will be glad to get the results from the scan in July. Like you, I hope you get a good report regarding shrinkage.

You mentioned that you have had some side effects from the Octreotide. Could you share about that and if the side effects have lessened over time?

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Thank you
My worst side effects are total exhaustion massive headache and diarrhea
The more minimal are a cough the flashing spike in BP(not as bad as in the beginning) freezing face feeling swollen
All usually go away within 5-7 days
The one side effect that is getting worst is my short term memory
I did see a neurologist he ran a bunch of tests
I will be getting a mri of the brain every 6 months
He didn’t see anything alarming he believed it is from the Ocreotide

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sophiarose | @sophiarose | May 26 3:45pm
In reply to @dbamos1945 "@vinnie694: As I recall there was an Alpha PRRT vs. Afinator type Chemo pill and you..." + (show)
@dbamos1945

@vinnie694: As I recall there was an Alpha PRRT vs. Afinator type Chemo pill and you were chosen for the pill. I could be wrong, but I am interested in your experience.
I am glad to learn your Lutathera infusions were tolerated well and you are getting the tumor stability you need; as well as the tumor shrinkage too! Please post your June/July scan results so we can celebrate with you.
I am so curious about the Alpha PRRT trial experience for our future treatment option. Best…

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I only took Afinitor for 9 weeks it gave me a major BP and pulse issue and I was hospitalized twice in that 9 weeks
They said I had Tachycardia
My oncologist wanted to continue however
My cardiologist made me stop
It took 15 months for my Tachycardia issues to resolve but in that 15 months I did do PRRT which I am sure slowed down the healing process
Good luck everyone

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sophiarose | @sophiarose | May 26 5:30pm
In reply to @vinnie694 "I do not have a stent, the PRRT treatment I received was called Lutathera, all 4..." + (show)
@vinnie694

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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Yes
It is the same

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sophiarose | @sophiarose | May 26 5:34pm
In reply to @vinnie694 "I will be getting a MRI, in June, and. Pet scan in July." + (show)
@vinnie694

I will be getting a MRI, in June, and. Pet scan in July.

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Good luck
I am getting a mri and a ct of my chest in July
I already did a PET scan in March

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itsamarathon2025 | @itsamarathon2025 | May 29 11:08am
In reply to @zacharycat "Glad you are well. Had 4 prrt treatments May-Nov, wish it was 6 like you are..." + (show)
@zacharycat

Glad you are well. Had 4 prrt treatments May-Nov, wish it was 6 like you are having. 5 months after last treatment scans showed tumor still shrinking but hypoglycemia symptoms started to recur. Had distal pancreatectomy and the plan is to start cabozantinib in June. Ideally i would probably choose more prrt with alpha particles but i guess actinium 225 is in short supply.

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Hyper or Hypo - Gylcemia? Can I ask what your numbers for sugar levels are that you're referring to?

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1 reply
zacharycat | @zacharycat | May 29 2:26pm
In reply to @itsamarathon2025 "Hyper or Hypo - Gylcemia? Can I ask what your numbers for sugar levels are that..." + (show)
@itsamarathon2025

Hyper or Hypo - Gylcemia? Can I ask what your numbers for sugar levels are that you're referring to?

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In the 70-140 range about 70% of the time, below 70 the rest. Anyway my dexcom patch expired and it's outside my insurance and quite expensive to replace it.

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itsamarathon2025 | @itsamarathon2025 | 4 days ago
In reply to @vinnie694 "I do not have a stent, the PRRT treatment I received was called Lutathera, all 4..." + (show)
@vinnie694

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?

Jump to this post

Same.

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