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Everolimus side effects
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?
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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1 ReactionThat is great
I hope the same happens to me
I won’t start till after I get my PET scan which is mid November
Yes. I’m taking it also. I was also scanned with no further progression. This is now my 4 th month taking this medication.
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
I am starting my 8th week of Everolimus treatment and for the last 2-3 weeks my middle back has developed a very itchy rash
Yesterday I noticed it on my upper chest by my shoulder and some tiny spots on my neck
I put Afterbite on my chest area and it stopped the itching immediately
Has anyone had this reaction and what have they done to help control the itching
Thank you for your quick reply
Happy New Year Everyone!
Itching rash is a side effect which the drug recommendations is to contact your doctor right away.
Oncologist sent me to a dermatologist he took several biopsies
Oncologist told me to stop taking Afinitor for 2 doses and then start again
Now awaiting biopsy results
I think I did have some withdrawal effects
I will update as soon as I know anything
Thank you
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