Acadiana NETS

I had my monthly injection & bloodwork today. Been feeling exceptionally good the last few days. My oncologist told me to keep doing what I’m doing.

Bloodwork looked good, well for a person surviving cancer and the treatments. Lost a couple of pounds as well. Let’s hope it’s all the same next month when I get to do it all over again.

Spoke to my onc this afternoon. She was delighted and surprised. All my tumors are still stable and one of my liver tumors even showed some shrinkage. She said she’s never seen that before with a patient on monthly Lanreotide and Everolimus 10mg. She also gave me an extra month between scans. They will be every 4 months now instead of 3 unless something new comes up. 😁

If you or someone you know is living with Neuroendocrine Tumors please direct them here. Even if it’s just to talk or share your experience I’d like to help if I can.

I know there are not many of us out there and I know from experience that sometimes it feels better to talk to someone who truly knows and shares a similar experience.

Burton DuCote’

This is my story.

I was diagnosed in December 2019 of, what seemed at the time, a rare and mysterious cancer. Neuroendocrine Tumors. I remember the first thing one of my doctors told me, “If you had to have cancer this is the one you would want to have.” Honestly, 6 years down the road, I’ll say no thank you. Yes, it’s manageable. Yes, in my case, slow growing, but it’s still cancer. It’s not curable and I get to live with it for the rest of my life.

Although I do live a pretty normal life, it never leaves my thoughts and it’s always there. Unfortunately, there is not a lot of research being done on it because in most cases like mine it’s manageable. The only bad thing is it’s often misdiagnosed or not found until it’s metastisized to some other area in the body.

So I do MRIs and PETSCANs every 3 months, monthly bloodwork and a monthly injection. The only thing to be done is keep the tumors from spreading and growing.

I’m not looking for sympathy or anything like that. Im just trying to raise awareness about NETS as it does not get near the attention that other cancers do.