Everolimus

Public Archive
1

Afternoon all, is anyone here on Everolimus please? I am due to start this treatment alongside Exemestane and would like to know if anyone else is on this regime. I am in my third BC episode and after the last surgery in October 13, I still have the tumor as it is not accessible,  My first was 16 yrs ago, the second episode 3 yrs ago and this present one was diagnosed this July. I had chemo, radiotherapy and five years on Tamoxifen the first episode, radiotherapy and Letrozole the second episode and now I will be having Evolimus and Exemestane.

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Hi Louisehuk,

I’m sorry you haven’t had any replies to your post yet.  Hopefully someone will notice now and come along to offer some support.

You might also call our Helpline for information and support.  They are open today from 10-2 and 9-5 on weekdays.  The number is 0808 800 6000

Very best wishes

Janet

BCC Moderator

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Hi louisehuk, I am just about to start with the combination of Everolimus and Exemestane and wonder how you have found the combination during the last six months.

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Hi Louise. I have a month before I start but I will let you know how I get on thanks very much for sharing your experience. I have had three years of normal life so being ill will come hard. Lots of positive thoughts. Xxx

5

Hi, I haven’t been able to find the thread. Xx

6

Hi Chrisrose,

I think this may be the one:

forum.breastcancercare.org.uk/t5/Treatments-and-medical-issues/anyone-on-everolimus-exestamene-got-advice-on-se-s/m-p/718443#U718443

Hope this helps.

Best wishes

Janet

BCC Moderator

7

Hi louisehuk,
Not sure how your EE treatment is going. Unfortunately I have not had a good experience and after 10 days I am ready to give up on Everolimus. I have many side effects - the most painful being mouth ulcers but also including headaches, nose bleeds, tinnitus and head rush and general flu like symptoms. I can see things getting worse over time so will stop it. I did take loads of advice in relation to mouthwash, toothpaste etc but these have made little difference. Sorry to sound so negative.

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Hi Louise, I could not cope with the side effects and have given up the chemo tablets. I have also gone and got a second opinion and will see the consultant again at Guys on Thursday. I wasn’t good with chemo first time round but this has been worse - just about every side effect and a sense that I had no back up support. I have put quality of life first. You are doing really well so don’t give up!
Thanks for your thoughts and best wishes, Chris xx

9

Hi Louisehuk,
Oncologist has put me on an anti oestrogen drug - Tamoxifen - until a further review in September so a lull for a couple of months. It’s good that you are doing so well.