Everolimus AKA Afinitor Has Stopped Working

Well, it was bound to happen. The chemotherapy I have been on Everolimus AKA afinitor has stopped working. If you remember, a little while ago, I asked for advice from the carcinoid cancer / net community and I was overwhelmed by everyone’s response. Thank you again to everyone who offered advice.The cancer has continued to spread in my liver, intestines and has now spread to my spine. Not good.

It looks like I will be starting Sunitinib soon. My understanding is that it works very similar to the everolimus but works on different proteins. While I am on the Sunitinib I will be researching PRRT. I am hoping to go to Europe to try PRRT therapy rather than the chemo embolization since it seems more effective and does not involve surgery of any kind. I can always double back and get embolization later. Now, I need to find an American doctor who can guide me regarding the best places to go, costs, how long between treatments etc.

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8 Comments

    • Thanks Ronny, I hope you are feeling well. 🙂
      My first move with the PRRT is to compile a list of US doctors that can help navigate me through this.
      I know Dr. Liu recommends PRRT but I need to look into it a bit more and see who is the best fit for me.
      Wish me luck. 🙂

  1. Hello Ed, Are you taking the Sutent now? I have been on it for 9 mos. now. I have had some success, i like yourself have been to NYC, UPenn, now I am at NIH in Bethesda, MD in a clinical trial with Sutent. I recommend them highly. They are world reknown, all free, our tax dollars pay for this place. I can offer you more information if you would like to message me. Diana

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