Now I have to be on a statin! Never had a problem before. Everything tastes terrible and I can barely eat. On the middle dose - but want to beg for the lowest dose. Not much energy to play with the grandkids.
Took the wonderful advice from this forum - of putting the pill in an empty capsule - so no sore mouth.
Check out the alternatives to statins online to find a substitute which works better for you.
Anorexia and the bitter taste of food is a known side effect of Afinitor. I gave in to the anorexia but I had weight to lose so it was okay but I just found anything with sugar was a problem. And so many things including milk do have natural sugars in them. My doctor suggested Sustagen because it’s very high in everything including calories but one drink a day was enough to stabilise my weight. I only lasted on Afinitor for ten months because of liver inflammation but I stayed on Exemestane. I didn’t have mouth ulcers either but I didn’t do anything to avoid them. Only 60% get mouth ulcers but it’s the biggest side effect.
Don’t want to frighten you, please be aware that if you are taking a stain with Ibrance you will get Rhabdomylosis. I took a while for me to get it full blown , had mild episodes in which I would have to get a transfusion and or infusion and go off all beds. It was assumed worsened anemia. Until one weekend I went from having trouble walking to full blown Rhabdomylosis, please notify Dr. of this side effect , I was taken by ambulance, it causes muscle breakdown then organ failures. Please read up on it. Take care
Whoa! Thank you for this info! I will do my homework. I never needed a statin before switching to Everolimus from Ibrance.
Honestly , I think this dose (7,5) is overkill. My ctDNA is positive 2. 08.
The crazy thing was I didn’t even need a statin it was just something my former gp gave me because I was on thyroid medication. I had many episodes over the years of rhabdo symptons that were misdiagnosed. Now before I take any new medications I thoroughly research, we have to be proactive ourselves.
Take care
Hi Merma. I've been on Everolimus & Exemestane as my second line treatment since May 2023 and have been blessed to have really no side effects. I did however after a year on the treatment develop elevated cholesterol. My oncologist and I felt it was prudent to begin with a low dose statin and I have remained on it since. I also was prepared when I started Everolimus and put my dose(7.5mg) in a gelatin capsule so avoided the mouth sores that can be troublesome for some. I am surprised that you have developed high cholesterol after such a short time on the drug but I guess everyone is very different. I hope you are able to move forward. I'm not sure dropping down from 7.5 mg to 5 mg will make a difference in the hypercholesterolemia that you have developed. A change of treatment might be necessary. Good luck in whatever you decide and again I am truly sorry for the issues you are having. Take care.
Hello there. I had TERRIBLE side affects from this drug and when I asked to be placed on the lower dose, I was told that no studies support that the lower dose will actually work. So I stayed on the midle dose until it affected my breathing (which had always been perfect) and had to be taken off of it. That was June, since it's an older drug I doubt there are new studies on it but please ask 
Thank you. I called my drs office in tears yesterday. I am miserable. My Dr is having me take a week off to recover, and he lowered the dose to 5 mg. I think I will have a hard time starting up again.
I was first off for 3 weeks and nothing resolved. It took a month to feel normal. I feel great on Truqap but that’s for a specific mutation.
I have those mutations. Everolimus is not worth it.
Well after reading all the replies here so far it appears like my journey being on this drug so far for 16 months or so with basically no side effects is not the norm. I am sorry for the horribleness the rest of you reported. It really goes to show that we are all unique in our responses to drugs so often reading other peoples responses on patient portals like this have to be used as a what-if, you have to try in order to see how your body will tolerate it. Like Merma reported in the post above this is an older drug approved by Health Canada(That's where I live) in 2016 and is a a type of targeted drug called a mTOR blocker (inhibitor) mTOR is a type of protein called a kinase protein. In some types of cancer, mTOR is switched on, which makes the cancer cells grow and produce new blood vessels. mTOR blockers can stop the growth of some types of cancer. There are now newer drugs approved in the USA if you have the PIK3CA mutation(Piqray) and if you have PIK3CA, AKT1, and/or PTEN genes a even newer drug Truqap. These drugs aren't available to me in my health care provincial system even though they are both approved for use in Canada. So therefore I had to take a drug that is on the main mTOR pathway and that's probably why it is working for me. I also have the mutations of AKT1 so Truqap could have been an option on a trial however I was not illegible because one of their exclusions was if you had been on any drug that already targeted the mTOR pathway which Everolimus does.
So Merma if you have any of these mutations and you live somewhere that you have access, both of these might be a better option for you. Take care.
Thank you so much. I am so glad to hear about your success with this drug. I do have all of those mutations, plus a couple of others.
Anyway today was day 1 off Everolimus. No change yet. Hoping to feel a little better tomorrow.
Since the side effects have gotten worse, I’m actually starting to wonder if I’m allergic to Everolimus.
Exemestane and Everolimus
Ibrance side effects
Xgeva Side Effects
