I, too, have high grade (2/3) metastatic NETs—liver, pancreas, lungs, bone, adrenal gland, parotid gland. I also have “innumerable” liver tumors (one radiologist estimated about 80), and unknown primary (guess is lung or pancreas).
I am at Mayo Rochester, with Thor Halfdanarson. Diagnosed Jan 2020. I was told my situation is inoperable and incurable, so stability is the goal.
At the beginning, I was not a good candidate for PRRT (not enough uptake of the tracer on PET DOTATATE scan). I started with two cycles of CapTem (pill form). It did not work at all for me and I had notable growth on CT scan within two months. I then had 10 rounds of FOLFIRINOX chemotherapy, followed by 50 rounds of FOLFIRI chemotherapy (we discontinued oxaliplatin due to worsening neuropathy). I tolerated chemo well—every two weeks for about 2 1/2 years until October 2022. Started to see growth again in the liver. They repeated the PET DOTATATE scan and my tumors had changed and I was now a good candidate for PRRT, which I started in December 2022, with octreotide injections with PRRT treatment (I do not have a mid cycle injection). I have had two PRRT cycles so far and fatigue is really my only side effect.
New treatments are coming out all the time. This type of cancer is highly unique and individual and morphs over time—treatments that once might not have worked may become a viable option later.
Things seemed very grim for me, too, at the beginning. Do not lose faith or hope. I know I might always be getting some kind of treatment, probably for the rest of my life, but I have two kids and I will take it all if it means I’m still here.
All the love, prayers, and hugs to you. Please reach out if I can help in any way.