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Updating about My Lanreotide Injections & CT Scan
Neuroendocrine Tumors (NETs) | Last Active: May 21 1:07pm | Replies (57)Comment receiving replies
I’m trying to stay informed, but my NET specialist has told me he thinks there isn’t enough data yet when I asked him about Histrotripsy. I haven’t heard about Lutetium/Lu 177 dotatate, so I’ll check into it. My only dotatate PET scan was only partially paid by my insurance. The contrast medication was not paid only the scan itself. I ended up owing $420 out of pocket even after several conversations with the insurance company. My basic logic tells me the scan without the contrast was useless, but that is still what happened.
Replies to "I’m trying to stay informed, but my NET specialist has told me he thinks there isn’t..."
My oncologist said the same thing about Histrotripsy too.
My experience:
After discovery in Mar./2023 of a Grade 2, Small intestine NETs that metastasized to the liver (5 large tumors) by Aug. /2023 I was put on Lanreotide Then, in Nov. I had Bland Embolization on the largest (which worked to stabilize and shrink a little bit). Then, by Jan/2024 put onto PRRT (Lutathera) in Jan/2024. for 2 sessions and found that my tumors had aggressively grown. My Oncologist now wants to try the Captem (chemo) route, but, the talk is that it works better for Pancreatic cancers, so I am scheduled to have the new Histotripsy. I will report back if that works. Re: my jacket (below). I did get to wear it 2 times.
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Definitely ask about Lutathera! It has been approved for NET and most major Cancer centers have capabilities ( trained radiooncologists and facilities)
Hugs!