CSN Login
Members Online: 6

Everolimus - anyone have info or experience?

Joe C's picture
Joe C
Posts: 11
Joined: Dec 2013

A friend of mine informed me of a drug trial and I was curious if anyone here had experience with the trial or had thoughts on it. The Everolimus drug trial is for kidney cancer patients who have already undergone surgery.

http://clinicaltrials.gov/show/NCT01120249

 

 

 

Suekub's picture
Suekub
Posts: 118
Joined: Apr 2013

Hi Joe, i have just commenced taking everolimus (Afinitor) on Monday as part of the Meteor study. So far I have not yet had any side effects but am due for medical review including blood tests on 30 December.

wishing you all the best in whatever treatment you choose.

Sue

 

Joe C's picture
Joe C
Posts: 11
Joined: Dec 2013

Thanks Sue!  I'm going to speak with my oncologist soon about the study. Good luck!  Hope all goes well. 

todd121
Posts: 587
Joined: Dec 2012

I've been on a trial since last February taking 10mg of everolimus (or placebo) a day. It's a double blind placebo study. My side effects have been pretty minimal. Some fatigue and I had some nausea in the first few months at times, but it was mild. My blood work has been pretty good. My doctor seemed to think I was getting the real drug because I did have some side effects early on and then they subsided. He said for most people they peak and then subside in a few months.

I've been having some new symptoms recently, but my oncologist thinks they have nothing to do with the everolimus.

I chose to do this. I had a 7 cm Stage 3a tumor removed one year ago. I really wanted to try and do something to reduce my chances of recurrence, to help look into the possibility that something might help in an adjuvant setting, and also to get followed more closely and get to know a good RCC specialist.

The study requires that you start with some number of weeks of having the nephrectomy. I don't recall what it was, but it was maybe 2 months or 3 months at the most. So if you're interested, you have to hop on it once you've had the surgery.

Todd 

 

saintmont
Posts: 43
Joined: Feb 2013

I was on a trial with everolimus and sutent. The everolimus gave really bad mouth ulcers.

saintmont

Joe C's picture
Joe C
Posts: 11
Joined: Dec 2013

Thank you Todd and Saintmont.  I'll check in with my oncologist to make sure this trial is right for me.

todd121
Posts: 587
Joined: Dec 2012

I only had a very few small mouth sores early on and they went away.

If you can get your hands on the data for the other studies done with everolimus, you can see the percentages of different side effects against the placebo and get an idea what the chances are of experiencing them.

The most serious possible side effect is a problem with the lungs. I believe it's called pneuomonitis. You must be monitored very closely with blood tests and check ups every 6 weeks. Report breathing problems right away and make sure your doc listens to your lungs on every visit.

Todd

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network