Everolimus & Exemestane

[needingamiracle]

Hi all,

Anyone on Everolimus? Please share your experience. Thank you

[stardust1965]

Hi needingamiracle,

I was on this treatment as my second line. (Diagnosed de novo in November 2018). We all react differently to the drugs available to us and some people are on it for a good length of time.

Unfortunately it didn’t work for me and after six months my bone only mets had increased in activity with some new spots.

I have just moved on to Fulvestrant which is the next treatment available to me under the NHS guidelines.

I found E&E manageable and I think I was less fatigued than when I was on Letrozole and Ibrance. It did mess with my sense of taste and has left me with terribly split nails which should slowly improve now I am not on E&E. I had a few tummy issues as well. These were all minor side effects in the greater scheme of things but as I say our bodies are all different in our fight against cancer.

I hope someone replies who had more success than I did but I just wanted to let you know I found it easy to tolerate.

I hope you find a treatment that works for you. Good luck.

Vicki

[needingamiracle in reply to stardust1965]

Thank you for sharing. Do you mind sharing what tummy issues did you have?

[stardust1965 in reply to needingamiracle]

No, I don’t mind at all if it can help you. 😊

My stomach became a lot more sensitive and only seemed to like plain foods. It would make the most alarming rumbling noises after I had eaten and I’d feel a little bit nauseous. I also had very loose stool the whole time I was on E&E.

I will add again the caveat that we all react differently and you may not get any side effects or you may get different ones.

I always think it’s best to read the list of “possible side effects” in the pamphlets that come with our medication after we start the treatment otherwise we would never take the drugs! But as long as they work it’s worth it imho. I really hope you find the drug that works well for you.

I have just read your previous posts and can I say I would not consider travelling abroad for treatment and leaving a young family behind. They are where you need to be and they will give you strength. Australia should be able to provide excellent oncology treatments. I say this with the hindsight of having young adult children in the U.K. while I live in Europe with my husband (for his work). All my family (siblings, cousins etc) all live in NZ. And just to complicate things further I can only get treatment in the U.K. Stay with those you love and who love you. 💕

[needingamiracle in reply to stardust1965]

Thank you for sharing. Wow, you are all around the world. I'm in Australia but all our family members are in Malaysia. It's tough without family support and it's so hard to break the news to them.

All the best to us

[Staceyness]

Hey there. I’ve been on only exemestane for 3 years now. It’s my second line oftreatment after Ibrance and letrozole did not work for me.

[needingamiracle in reply to Staceyness]

3yrs is a good. Hopefully it will work as long as possible. Did you experience any side effects?

[Staceyness in reply to needingamiracle]

Exemestane usually works together with affinitor but when I was on the affinitor I developed a liver infection (not sure what caused that). I went off of it and stayed on just the exemestane until the infection went away. I stayed stable so my oncologist said not to mess with it and I’ve been on it alone for 3 years. I prayed for a miracle and here I am. God can do anything. ANYTHING!!!!

[needingamiracle in reply to Staceyness]

Yes, I definitely need God's miracle. Wish all of best of health