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Finished PRRT and I'm wondering about others results.
My husband completed 4 Lutathera treatments and had his first PET/CT with intravenous contrast (Dototate). He has source NET in pancreas metastasized to liver. Diagnosis was 5 and a half years ago. Considering cost of PRRT I was expecting miraculous results. I know there is no cure but of the 4 measured lesions 1 stayed the same, 2 reduced slightly and 1 increased in size. The source tumor reduced a little. The oncologist explained that they are not lighting up like they were and that's good. He's going to continue the Octreotide.
May I hear from others who have completed their PRRT about their results? Thank you.
Annie D
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@mdethardt: I try to stay informed on PRRT Lutathera infusions and the results. I can’t find the data, but believe that Pancreatic Primary NET tumors might not have a dramatic positive result from PRRT therapy (Gastro NET Primary is better).
Your husband and I share the same goals as NET patients: we are happy our tumors usually grow slowly, but tumor stability is a great result of NET therapy.
It is similar to that “Beat Down the Mole “ game you’ve seen as fairs. We know in our gut the odds are large that our tumors will change in size and even appear elsewhere in our bodies. We live with insecurity and realize our prognosis.
So, I am offering your family congratulations on a successful NET cancer treatment; however, I know you and your medical team will keep a close eye on that one tumor that has increased in size. Discuss the many possibilities with your NET specialist for the best treatment to attack this monster!!
Best days to you… Bette
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2 ReactionsThank you for responding Bette. I appreciate your reply and what you’ve shared with me. Oncologist has already told us that next step will most likely be surgery so we will be watching this carefully.
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1 ReactionI had 4 prrt sessions. All tumors shrank substantially making surgery more feasible. They continued me on lanreotide up to surgery but tumor activity increased again. On the whole though I felt better on the prrt than I had since before the diagnosis, or since surgery. Am now on cabometyx and the side effects are significant. With the prrt I had treatment every 7 weeks and the rest of the time almost forgot I had cancer.
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3 ReactionsFollowing …….. I am looking into a clinical trial with the NIH in MD for lutathera. I have a skull based parapharangeal ganglioma which was discovered in a PET that I had following colon cancer in 2012. Fast forward to 2025 when a lump appeared on my neck and started having f severe symptoms, headaches last for days, throbbing, heart palpitations strong ones like I’m having a heart attack, swishing in ears, thumping in ears, balance issues falling over splitting my head on the job, forgetfulness like real memory problems, swallowing issues, choking issues, numbness in fingers. I had radiation only on carotid body tumor, not any others. Another 2b lymph node appeared on scans on the other side of the neck, it’s grown from mm to cm’s apparent on all scans, Moffitt blew it off, my dr at Florida cancer said it’s amenable to biopsy and my hypermetabolic number was 147.3 on the carotid body tumor and it grew after radiation, well beyond the “ inflammation” time period. So does anyone have experience or know who has these kinds of tumors and what the likelihood of them shrinking is to make them easier to deal with in a possible surgical intervention??? Any help is appreciated. Tara🙏🌸
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