Everolimus side effects

Posted by sophiarose @sophiarose, Oct 3 7:47am

I was told yesterday that my NET has spread to my spine L1 and my periportal lymph node
I did Lanreotide and Ocreotide injections for 1 year couldn’t handle the side effects
I did right and left liver embolizations which I was told were successful except since my first embo this January more tumors in my right have appeared
I opted for the next step to be Everolimus which I am to be told has minimal side effects
Anyone out there ever took this drug? What were the side effects? What was the outcome?
My other option was PRRT
Thank you for your responses

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I believe that @abby84 @lyons1234 @tlf56831 @amani79 @tsabe2 have experience with everolimus (Afinitor) and can share more.

@sophiarose, did you start treatment with everolimus yet? How are you doing?

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Yes! I been on it for 3 months and when I had my scan, it showed no further progression. Are you taking it and if so can you share?

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That is great
I hope the same happens to me
I won’t start till after I get my PET scan which is mid November

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@tlf56831

Yes! I been on it for 3 months and when I had my scan, it showed no further progression. Are you taking it and if so can you share?

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Yes. I’m taking it also. I was also scanned with no further progression. This is now my 4 th month taking this medication.

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I am so happy for you
I hope it stops my progression as well
Right now I am waiting to get a PET scan to have a baseline
I am also having issues with my insurance my NET oncologist wants me on the non generic which my insurance won’t cover at all
They will cover the non generic I will have to pay a copay of $800 every 4 weeks
It is such a struggle
But if it works I will pay whatever I have to
I will keep you posted
Thank you so much
Best of luck to all

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