Afinitor (everolimus)

hi, i have been on afinitor/aromicin since september of last year and it certainly has been a journey, twice i was taken off the drug as it caused severe mouth ulcers, so i had two breaks of five days and after the second brek the mouth ulcers went away!! I too have had some pimples on my face and also initially had quite a problem with itchy skin, but this was alleviated by the use of anti histamine and now i only have a itchy scalp occasionally, its been a hard road but one which i feel is now finally worthwhile, my cancer/tumour markers are sitting at "normal" and for the first time in a long time I feel reasonably well, I feel fortunate that I have tolerated the side effects, and  think in part it was due to my determination not to give in unless things got really hard, please perservere,it seems that it takes a while to get in your system and for me at least the longer I am on the drugs the better I have tolerated them, my next scans are on July 1st, so that will really let me know where things are, good luck and if you want any other info please just message me,

wendy55

Hi Jenny

i had come off the new drug because of side effects but will see the Onc next week to discuss a lower dose. I am sure it would be easier if I knew they would help me. 

Hi Marilyn, 

I have been on afinitor and exemestane for 6 weeks so haven't had any scans yet to determine how I am responding. I have had some side effects which have been a bit hard to manage, mainly a rash / pimples on my face and upper torso, really bad fatigue and little/no appetite. My oncologist started me off on 10mg and I am seeing her tomorrow so may need to lower the dose to see if this lessens the side effects. Luckily though I haven't had any mouth ulcers, only a dry mouth and slightly inflamed gums. How are you coping with side effects?