Anyone on axitinib (Inlyta) for NETs? What side effects did you have?

Posted by pmileham @pmileham, Sep 28 12:36pm

I was on Cabometyx for 7 months. Had good results at first (one tumor shrank by 1/3 and lung nodules were nonvisible). Then next scan showed progression and lung nodules back. Frustrating how quickly things change. Doc decided to put me on Axitinib, but still waiting for insurance approval. Anyone else on that drug? Side effects same as cabo?

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.

Colleen Young, Connect Director | @colleenyoung | 6 days ago

@pmileham, I moved your question about axitinib (Inlyat) into its own discussion as it is a good topic. I'm more familiar with axitinib for kidney cancer. Here's a discussion in that group:
- Ipilimumab plus Nivolumab vs Pembrolizumab plus Axitinib https://connect.mayoclinic.org/discussion/ipilimumab-and-nivolumab-or-pembrolizumab-and-axitinib/

Here's info from Mayo Clinic
- Axitinib (oral route) https://www.mayoclinic.org/drugs-supplements/axitinib-oral-route/description/drg-20075455

I can imagine that it is frustrating and disappointing when a drug stops working. Did you get approval for axitinib? How are you doing?

rivhanwinardi | @rivhanwinardi | 3 days ago

My mom has been on cabozantinib for about two years for stage 4 kidney cancer that had metastasized to her lungs. She initially responded well, with some lung nodules shrinking or even disappearing. However, her latest scan showed a few new nodules and one existing nodule getting larger, so her doctor recently switched her to axitinib. So far, she has experienced nausea, headaches, and cold sweats as side effects.