Hope all goes well now Kris and you are feeling better. GPs are so different. Mine, like one of yours, Sheila, thinks I should go back to work. I don’t really see how I could as I feel really well one day and then awful on another day so would always be taking time off and as a teacher it is easier for them to substitute permanently than on odd days.
Wow, Liz, you have been through the wars haven’t you. I hope you are feeling better and get that holiday soon. I agree it is so easy to attribute every ache and pain to the cancer when it may have nothing to do with it.
I actually went out last night with some friends. Shattered today but it was worth it.
Love to all.
Gill x
Saw onc and she said to start EE again next week if blood test tomorrow is ok. Then go back for next dose in a month. Have to take things easy still. She seemed to think that the appendix may be to blame for some of the rubbish recently. Hope so! Will e to steel myself to start pills next week which sounds daft but I think you know what I mean.
Love to all, Liz x
Hell E/E girls.
I have one week on E/E and tongue/mouth suffer already… I do the moutwashes etc as regularly as I can. I feel a bit low these days. It is such a struggle this battle. I won’t give up but these days I find it very hard…
Hope you are coping better than me.
Valia
x
Hi Liz,
Hope you are getting over the op and hope your bloods are ok so that you can get back on the lovely pills! Maybe you wont have all the problems you had before. Wouldn’t that be great! Good luck.
Valia, Hang on in there. My mouth was very sore at the beginning and at Christmas it was bad but although I still have problems with it from time to time they aren’t as severe. I have tried all different mouthwashes. Difflam at the moment but have used salt and water which I found effective though painful when my mouth was actually sore. Mugard is another good one. I also drink a lot of ginger tea thanks to Kris advising me. In fact, I have gone off normal tea and only drink PUKKA three ginger tea. This could be helping.
I still have other SE too. Yesterday I was really fatigued!! Had to go to bed twice. This seems to happen now and again but I feel so much better today for the rest. Have even been swimming.
Hope you are all coping. I just have another week and a bit before I find out if the EE is working. Beginning to keep my fingers crossed.
Love Sheila xx
Valia, keep going. I had a really sore mouth for the first couple of weeks. Once it settled I haven’t had a mouth ulcer since. I’ve been on E/E for about 9 weeks. I know its difficult, miserable. But look after yourself and look forward to feeling better. Love Kris
Liz so pleased you are getting over op,like you say that may have contibuted to you feeling so low and suffering se’s.I started back on e/e again this week after 2 week break due to being in hospital with urine infection and then 5 days of rads. Rads had a really drastic affect on my bowels so seem to have lived in the loo for days.Have so far had no se,s from the e/e but I am on a lower dose as they felt my body could not currently cope with the 10 mg dose.Now I have no se’s I am worrying it is not working.
Sheila good luck with scan results, I really hope they show it is working.
Valia hang on in there,I found that the se’s come and go so hopefully mouth will get better soon.
have a good weekend all
Lynn xx
Thank you girls for your very kind words! It is so good to have your support. I will try Difflam too.
Sheila all the best for your scans. How long have you been on E/E?
Send you love and hugs.
Thank you for keep me sane!
Valia
x
Everything crossed for your scan results Sheila, love Kris
Valia, I have been on E/E for nine months now and coped pretty well overhall. I made a mistake when I said my scan results were only just over a week away. I will find out 2 weeks on Tuesday. You want to know dont you but you are still worried in case they aren’t what you are hoping for. Thanks for your good luck wishes all of you.
Love Sheila xxx
Thanks Sheila. I hope E/E will continue work well for you and you tolerate it as well as now.
Good wishes all around
Valia
x
Lynn, hope you are feeling better and tolerating restart. I too restarted EE 5mg a week ago now and so far OK, just one day upset stomach. Anyway thinking of you and everyone else, keep going xxx Kris
Liz, hope youre recovering and feeling stronger, thinking of you x
Welcome to E/E group Kristine. I am a very new member here too. Just completed day no 10 on this combo.
Hope it will work for all of us!
Best Wishes
Valia
x
Hi everyone.
Had my brain scan results yesterday and all clear! Yay!! Onc says my dizziness is due to something else and mentioned various possibilities (blood pressure, cervical problems, etc.) but NOT to lesions in the brain!! Was thrilled and am going away for a few days with my husband from tomorrow as a treat.
I am on my third month of EE now and in June I am having liver / lungs scan and bone scan so that will be the test of whether it is all working.
Good luck with your results Sheila, and hope everyone is having a good week.
This thread is so helpful and you realise you are not alone, so thanks to all.
Love,
Gill x
Great news, Gill! What a relief! Hope you have a lovely break with your husband.
Well, I’ve been on E/E for a week now and so far, so good in terms of SEs. The main things I’m dealing with are: a burnt tongue, but no ulcers or sores yet; a tight, wheezing chest an hour or so after taking my tablets, but that soon passes; a slight rash on the sides and back of my neck; and dry white wine tastes like sucking Aspirins - bleurgh!! If things stay like this, I’ll be a very happy bunny, but I’m prepared to put up with SEs if this treatment’ll work for me… I’ll have a CT in about 12 weeks to see what’s going on… Fingers crossed for all of us! xx
Brilliant Gill, big hugs, have a lovely break away. Kris x
Keep it up Angel Falls, shame about the taste of wine, I’m sort of missing it a bit but nothing tastes the same these days, ah well. Theres always ginger tea or maybe I should be trying fine champagne. Kris x
Enjoy the trip away now Gill !!
I felt dreadful all weekend and yesterday so have another week off everolimus. Have started back on exemestane though. Feel bit better today so perhaps it was delayed post op reaction or a bug I’ve picked up. Who knows…
Am on kindle again, so keeping it short. Hope to restart everolimus next week. We will see.
Keep as well as possible, girls.
Liz x
Brilliant news Gill. Enjoy your break! I had a brain scan a year ago due to headaches but it was clear so I know the feeling!
Liz I hope you soon feel well again. It’s still early days since your op and I think it will take a little longer to recover due to the medication you are taking.
Hope everyone else is okay.
Love Sheila xx
Thanks, Kris. I can report that pink cava tastes fine!!! 
Gill that is really good news.
Angelfalls pleased you have managed to sort out the wine situation.
Liz sorry you are still struggling.It has taken me a few weeks to recover from my infection,so be kind to yourself and take it easy.I started the exestemane a week before everolimus as onc wanted me to get over rads first.I have been back on everolimus for about 10 days now and thought I was doing well but have the start of a mouth ulcer today.I am finding the 5mg dose much easier to cope with so maybe ask your onc if it is possible to lower your dose for a while.Of course I am also panicking that maybe it is not working as well!! just don’t think my immune system,and me,would be able to cope with the higher dose at the moment so I feel it is better to have the lower dose than have to give up all together.My onc has given me forms to fill out for another trial drug which works in a similar way to everolmus but it is more targeted and is less aggressive.Seems RM are beginning the trials so she wants me to put in my application in case I need to change from everolimus.As my results of scan were good I am hoping I can continue with the everolimus,but it is also nice to know there is an alternative.
Keep well all.
Lynn xx