Good morning!!!

As I mentioned above, I was diagnosed January 2020, grade 3 (Ki67 17-29 depending on biopsy), well-differentiated, unknown primary (although they suspect pancreas or lungs), with mets to liver, adrenal gland, parotid gland, and bones. I see a NET specialist at Mayo Rochester after being misdiagnosed by my local oncologist initially, and I am so glad I did. The treatment plan changed drastically once I had the second opinion from a specialist.

I started on CapTem (2 months) and unfortunately, I did not have a valuable response and had to switch treatment quickly. I then did 10 rounds of Folfirinox (with some tumor shrinkage--stopped due to neuropathy and they hoped to be able to use oxaliplatin in the future again--I am so glad we did this), 50 rounds of Folfiri (with scan stability, no shrinkage) over 2 years until my cancer started to outsmart it.

I then did 3 rounds of PRRT with octreotide injections with the treatment only (no in-between shots) after a new PET scan showed I had better receptor response than I did originally. My understanding, for me, is that if I had shown better uptake in 2020 they may have started with PRRT instead of CapTem. I did not do the 4th PRRT under advisement of my medical team at Mayo because I was showing too much progression at that time. That is when I started Cabo. I was only on Cabo for 2 months because I didn't have a good response to that one, either--I had a lot of tumor progression in my liver, especially.

By fall of 2023, they wanted to do Folfox to get my tumors under control again. We did 4 more rounds of that until October 2023. I then did about 8 months of immunotherapy (ipinivo) until scans showed progression in June 2024. Started Afinitor (everolimus) 10mg in June 2024, reduced to 7.5mg in July because of really low blood counts and side effects. I stayed on 7.5mg until February 2025 when I started showing progression again. For me, I LOVED Afinitor because I had very few side effects and actually felt pretty normal on it. Energy, appetite, taste/smell improved and it was wonderful.

The team at Mayo decided to put me back on Folfox to try to get control of things again two weeks ago. I think they hope to do at least 4 rounds if I can tolerate it. Honestly, it's not real clear at this point what the next treatment for me would be. I'm just taking it one day at a time. Trying, anyway. 🙂

All of this to say--I completely, 100% trust my NET specialist. I am a medical provider myself and had never even heard of this kind of cancer before I was diagnosed. It is so unique to each person and everyone has a different recipe that works for them. Many of the treatments my team thought would work didn't, and those they thought I'd only be on for a short time I've done a record number of rounds.

Sending all of my love and many hugs to you. Please feel free to reach out or ask questions.
Take care,
Brenda