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Update: Lutethera treatment is over

Neuroendocrine Tumors (NETs) | Last Active: Feb 21 1:13pm | Replies (25)
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@ricki8

I just had my first shot of the PRRT at the same day/time of Dr. Strosberg's talk (how convenient) and my experience was quite different from sandy23's husband. I wonder if he had a stronger dose (mine was 20%). No side affects and I feel good. 4.5 hrs. in the hospital, 30 min. of the PRRT injection. We have to remember that each of us could experience the results differently. Good luck to all of us while dealing with this (not so rare anymore) cancer.

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Replies to "I just had my first shot of the PRRT at the same day/time of Dr. Strosberg's..."
sandy23 | @sandy23 | Jan 15 12:23pm

Are you referring to the Lutethera treatment??

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phyllisden | @phyllisden | Feb 4 10:49pm

ricki8, I haven't been part of this conversation, but decided to join tonight. I went to Mayo in Phoenix in April 2021 to have the PRRT treatment. I'd had a blockage in my small intestine in March 2018, when they finally (after 11 years) found the carcinoid tumors. I lost 10" of those intestines. Then in July 2019 I had a blockage in my large intestines and lost 11" of those. So in March 2020 I went for a consult at Mayo. And yes, the pandemic hit so I didn't go back for treatment until April 2021. At that time they determined the tumors deemed "unresectable" (like the 2 cm one in my stomach) had grown slightly.
Anyway, after my first full dosage treatment I had some severe and unheard of side effects. So for the next three, they cut the dosage in half. I still had issues with nausea (but taking 8 MG of Zofran and .5 of Ativan pretty well fixed that.) I took quite a bit of Imodium and had fatigue for awhile, but otherwise was OK. Did your doctor say why they only gave you 20% of the usual dosage?
I completed treatment in Oct. 2021, continue with my 30 MG Octreotide shots every 28 days, and have had 4 scans since (last one was 1/5) - all with "stable" results. So between the scans and labs, the tumors are "non-functioning". I'll take that! I'm on no special diet, just eat what I want and what agrees with me.
I hope you get what you need to stop the tumors from growing. And that you'll be able to move on in your life. I do believe it's a chronic disease you manage, like any other chronic disease.
Good luck and keep a positive attitude - it really helps.

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