The same week I met with the Dr at Dana Farber the first of September 2022 they started me FolFox5 every 2 weeks and an octreotide shot once a month. I had been on the octreotide since June of 2022. I had some tumors on my liver that were 10cm and after 6 months were reduced to about 4.5cm.
The only problems I had were Neuropathy in my hands and feet and a metallic taste in my mouth which made it almost impossible to eat. It seemed to get worse after the treatment ended but gradually got better.
All was well for a few months but in the last 10 weeks tumors have doubled in size and started Capecitabine pills this week.
My NET is an Insulinoma which makes my suger drop so when that started happening I had a gut feeling the tumors were growing.
Dana Farber has been great but I think Mayo is good too. I’m in the Boston area so easier for me to go there.