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PRRT Treatment

Neuroendocrine Tumors (NETs) | Last Active: 5 days ago | Replies (12)

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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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Replies to "I had standard 4-infusion course of Lutathera back in '23. As with dbamos1945, my side effects..."

@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 🙂

@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.