← Return to Lost with no confirmation of NETs origin: Innumerable liver lesions
DiscussionLost with no confirmation of NETs origin: Innumerable liver lesions
Neuroendocrine Tumors (NETs) | Last Active: Mar 31, 2023 | Replies (77)Comment receiving replies
Replies to "Just went to the first oncologist appointment. After my doctor discussed with the hospital tumor board..."
I do not have personal experience with those two chemo drugs. I am not an oncologist, but I can say my team also wanted to “go hard” at my cancer—thus, with IV chemo, in my case, every two weeks—due to aggressiveness. I also had a new CT scan every two months. PRRT is, as I understand it, one treatment every two months for four treatments (so, over 8 months), and I was told it’s not the best first option for aggressive cases, such as ours. My team also wanted to get it more “under control” and stable before moving to something like PRRT.
I’m so glad you have a plan set forth and I’m sending all the best thoughts and energy your way. Please continue to ask questions if you need!
I was put on Folfirinox chemo for 12 treatments every 2 weeks for 3 days. I would get one in the hospital and that take a bag of chemo home with a pump for 48 hours that I would remove at home. My tumors shrank quite a bit. My glucose is now stable.
Apparently this is similar to what you would receive if you had Colon cancer.
I’ve said to others, if your not comfortable get a second opinion from someone who is familiar with this type of NET cancer.
Don’t know where you are but go to a big well known hospital, not the local hospital. I’m on my 3rd hospital, Dana Farber in Boston. But there are many others.
But get someplace that is familiar with NET, hospital number 2 was treating me like I had regular pancreases cancer, and it didn’t work