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Afinitor (Everolimus)

Posts: 5
Joined: Oct 2007

Hello everyone,

From Stage II in 2001 to Stage IV in 2012.  Had brain mets in August and had Gamma Knife radiation, will be happy to help anyone with questions about it.   Now, about to start Afinitor because Arimidex is no longer working and the node in my right lung is slowly growing.   I'm running out of body parts to have cancer!  Told my doctor that I feel like a sample platter from the Olive Garden.

I would like to hear if anyone is taking Afinitor and what side effects are you experiencing.  

Hope to hear from you.  May God continue to bless us all!

camul's picture
Posts: 2541
Joined: Dec 2010

but only lasted 31 days. By day 3 ai started with a cough and wheazing. Had chest xrays. Lungs were.clear, was started on zpak, steroids and cough syrup. Didn't help. Then got mouth sores and really dry mouth. Then got a rash and open sores from head to toe, it was an allergic reaction. Was taken off it. Within 30 hours all had cleared up. For the last 17 days I was sleeping up to 20 hours a day. This was only my reaction, I don't want to scare you. My doctor thinks my immune system is so run down after 2 years of chemo and that could be why I couldnt tolerate it. I know there is another woman who has been on it for over 2 months and she has had no problems with it.

SIROD's picture
Posts: 2199
Joined: Jun 2010

Hi Minina,

You have had a rough time and I am so sorry.  I have not taken Afinitor but I've been reading about this drug for a long, long time.  First when it was in Clinical trial.  One of the met's board I use, several women had taken part in the trial and the promises with Afinitor and Aromasin were excellent.  The most time I've read that they had with it was 27 months before progression.  Another board that I participate in which is for again Advance stages of BC many, many women have been on it.  There are both, those who the drug has worked well and those who the drug didn't work well at all and don't have a good word for it.  

All drugs have side effects and I thought for those that have had time with it, they didn't sound to bad.  I have been very interested in it as it is one I hope to try this drug hopefully next.  I have used Tamoxifen, Arimidex, Femara and now on the second go round with Faslodex (my first time was 1 shot with 250 mg and now it is 2 shots with 500 mg.  Wasn't strong enough the first time and so I progressed.

Read their archives and you will find much information on this drug.

Wishing you the best,





McMarty's picture
Posts: 212
Joined: Nov 2012

Hi!  I just stopped Affinitor. 

It was hard for me because it spiked my blood sugar and I went from borderline to full blown diabetes!  I went from no need for meds to checking my levels 4 times a day and 4 larege injections of insulin a day.  That was a HUGE shock and a LOT to digest.  But that is rare, maybe only 25% if I remember my research correctly. 

I had some sores in my nose?  I guess they got lost on their way to my mouth :)

After I got all settled down, I felt REALLY GOOD on Affinitor/Exemestane!  AND it did a really good job.  My progression was kind of out of control when I started but the Affinitor/Exemestane combo really took over and slowed it down.

I switched to Taxol to get the whole mess knocked back down and I think they are planning to put me back on Affinitor after Taxol.  It will probably work even better then - it will have less to fight!

I sure hope it works well for you.  Remember, give it some time, the side effects really settled down for me after the first 3 weeks or so!


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