I’m still the newbie with this combo as have only had it for 2 weeks. The onc who saw me said the common se from patients he’d seen tended to be skin rash and diarrohea. I have had the skin rash over lots of my body the last couple of days and mouth ulcers from very early on although they seem slightly better now. It seems the skin rash has taken over. I am also on fentanyl patches which cause constipation so was hoping the everolimus diarrohea se may counteract that but no way! Feeling sorry for myself at the mo…Don’t want to give in yet as very early days and I know the results are supposed to be good.
By the way, I have read on a US site that the manufacturers have brought out a 7.5 mg version but don’t know if it’s available in the UK. At least I may always have the option of a 5mg dose.
All we want is a magic drug with no side effects, eh?? Not much to ask.
Liz xx
Hi Sheila, just saw your PM today, no its not travel diarrhoea !!
Feeling perkier tho, despite having to stop everolimus for now, heard that my ca 153 had gone down alot!!! Hope you are doing well, hav eyou retired yet. Love Kris
Liz like you I have constipation from painkillers,think mine is from the morphine,and I had hoped the everolimus se might cancel that out but no still need to take movicol to get things moving. I have had nausea since starting the exestemane 4 weeks before the everolimus. I have also had stomach problems with zometa,stomach cramps and diarrohea.When taking so many different things it is hard to work out which se belongs to which drug/treatment. I have only been taking the everolimus for 8 weeks but have had a range of probs…ulcers from about day 3,rash all over my face,neck,chest,hands,nausea loss of appetite.I have found that they seem to come and go quite quickly so hope that as time goes on things settle down.I am having a forced break for a few days as could not get to hospital because of the snow.I reaaly want to get to 3 month scan so i can see how successful the treatment is on my bone and liver mets.I have just had an mri so that may show some improvement.If the drug lives up to it’s promise then I will put up with the se’s…I was so upset when I found out about the liver mets so am hoping for miracles.Liz it is not too much to ask for a magic drug with no se’s.
kris hope it all settles down for you soon.
Take care all.
Lynn xx
Hi Kris,
I retire at the end of this month!! Taking some annual leave at the moment so that’s it really. No more work and spring around the corner!! Yipee. Have you been away?
The treatment seems to be working for you so I hope the SE go away and you can carry on. Have they settled any more? I have an appointment to see the breast surgeon next Monday. Because I had skin mets she is still keeping an eye on me. I dont think I have any now so hoping she doesn’t spot anything.
Take care . Love Sheila x
My mouth ulcers have eased a bit over last couple of days as has ‘nose bleed’ but body rash has spread a lot more and is itching. Am hoping this will settle in due course and is part of the monthly cycle that I will get used to. Exactly half way through this moth today. We will see. Unwilling to moan to oncology again so have started taking photos on my phone to show them when I am in clinic in 2 weeks’ time.
Good luck with your appointment next week Mags.Sorry that should read Sheila
Liz x
Hi lizcat, have you tried antihistommes when i was on trial drug i took them when i had a terrible rash, it did help. you said good luck for my appontment next week, did you mean me as i dont have an appointment for till april 15th. have got to take back the 10m.g evermolus the hospital pharmacist mayed a mistake with dosage should have been 5m,g. thank goodness i noticed as i dont want the ulcers back so im hoping lower dose will stop them… but i am still havng dia and stomach ache so its not all to blame but it must be the everstane as well. so long as it keeps the big C away ill put up with it. looking forward to meeting lucinda and julie d. e can compare s.e. mags xx
BB - well spotted, I meant Sheila (zola). It will be great for you to meet up with Julie and Lucinda. I know L is just ahead of me on the new combo and the se have settled a bit. You will have a good laugh with them I’m sure. Good job you spotted the dosage mistake. Perhaps you will be able to go back up again from the 5 mg in due course once your body has adapted to the drug. I’m going to see about antihistamines if rash continues to annoy me. Nurse who saw me the other day said she was on a course for a couple of days but would be back on Fri so I may ring her tomorrow if it’s spread any more.
Liz xx
Thanks Liz. I dont mind going to my breast surgeon. She is really nice and I think she had something to do with me getting on the evorilmus when I did. She said that i was well and they wanted to keep me that way and then I saw the onc who prescribed the treatment.
I hope you are better and the itch and the mouth ulcers have settled down. xx
hi i am back on the everolimus… have to wait and see how long it takes to get the mouth ulcers back… but my real problem is bad stomach aches and dia, have got tablets to counter act this but then i have problems the other way and dont want to keep taking tablets for side effets. has anyone else has this problem and if so do you just put up with it or do you take the pills. mags
Mags, I ve been taking Everolimus for 8 weeks and no gastric sx until a week ago. I had to stop for a few days but have restarted myself on 5mg and cramps are coming and going but diarrhoea hasn’t returned. I find not allowing yourself to get too hungry helps and eating boiled rice or mashed potatoes is gentler on the stomach than the food I normally like , bread too helps. Kris x
Hi, Just got back from seeing the breast surgeon. She checked me over for any skin mets and said everything was okay. Also felt for any new lumps etc and said that she could no longer feel the lump under my right arm. This was only small (11mm) last June and the scan last time showed that it was down to 6mm so this is good news!
However I have just found a lump behind my left knee which is only visible and you can only feel it when my leg is straight. I thought it was a “baker’s cyst” before I went to the hospital and the surgeon agrees with me but she is going to order an ultra sound just to be sure. I’m pretty sure that this is what it is but life is a constant worry when you have this B.C. isn’t it? x
Sheila, thought about you today, glad your appointment went well and that is such good news re lump shrinking. But yes youre right new signs and sx are worrying. I find that even when I’m trying to be cool and calm GP and Onc. always seem to be thinking the worst. The battle for me is definitely more psychological than physical and I know the answer is to try and learn not to be afraid. I’m still learning! Kris x
Hi Kris, yes, you and me both. It does get easier but not much! i am okay if I am busy. I feel pretty well so not doing any less. Except going to work of course which is great! There are 4 leaving at the end of the month so we are having a lunch next week and I can get all the last bits and pieces tied up. Then I think there is a night out going for a curry.
Take care Kris. Love Sheila x
Hi ladies,
Sorry I’ve not posted recently but I’ve been on my kindle loads and typing is a nightmare on it. Have been reading all your posts though.
Sheila - all seems relatively good news for you. It’s the way of things that once diagnosed with cancer we assume any ache and pain is automaitcally cancer related and tend to forget we can get ‘normal’ illnesses just like anyone else.
Kris - I have found my appetite and sense of taste has altered. Definitely find that eating less but more often helps and it’s more a case of having what I fancy, when I fancy it, although I was alarmed (as was everyone else) when I thought ‘Ooh, I’ll have one of those nice apples’ the other day insyead of my usual ‘Ooh, I’ll have a nice bit of cake/chocolate’.
Update from last week. The rash went all over my whole body apart from lower legs and itched like mad. Rang oncology and they said nurse wanted me to go up and see her that morning (Fri). She gave me some 1% hydrocortisone cream and that has worked really well and really quickly. We suspect that because I get eczema and have really sensitive skin, I have more of an allergic reaction. Nurse did say they can always give me oral steroids or other stuff. Mouth ulcers still under control at the mo - hope I haven’t spoken too soon. The worst bit now is constipation which I think is from the fentanyl patch. Tried all sorts without much luck but got some dulcolax and hemarroid cream yesterday and that seems to have helped a bit. I also left patch off from Sat night til very early this morning when I was wide awake and needed to get to sleep so slapped one back on. During the time the patch was off I had no pain at all and prior to using them a fortnight ago when I started all the new drugs, I could barely move without ache/pain/spasm. No idea if it’s the new drugs working and bashing the cancer but I like to think so. Nurse at hospital said they have had some good results with it but I’m not sure if they are bc mets.
Well, I’ll be off now onto chat and try to post smaller writings more often!!
Love to all, Liz x
Hi Liz, Yes news does seem pretty good but as you say you can’t have a twinge without thinking the worst.
Hope your rash clears up and that you have got rid of the mouth ulcers. I was okay for about four to five weeks and I have got a new one this morning. DAMN! If it stays at one and I get a break again then I’ll cope. Some foods still make my tongue feel sore even when I haven’t got an ulcer though. Tomatoes are one and I love tomatoes. Also my taste buds have changed although my appetite has improved a lot in the last couple of months. I have gone off chocolate and fruit doesn’t taste the same but I do try to still eat fruit often. I still enjoy puddings though, even chocolate ones which is weird.
I am going to try the live chat on Thursday but go to yoga on Tuesdays so get home too late.
Take care and hope everyone’s SE are settling down and we all have good results. Sheila x
Hi All,
Has anyone seen in the news that at the moment, NICE are rejecting evorilmus for the treatment of secondary breast cancer. saying that it does not give value for money. I think there will be further talks so maybe things will hopefully change.
Yeah, I saw that. Very worrying when it has been made out to be a done deal…thank heavens i got the funding last month! Feeling a bit better again, rash barely there and no mouth ulcers as such. Still get tired but that could be anything - a siesta calls!!! Next lot of pills due on Thurs, fingers crossed.
Have you seen there is a secondary meet-up at Liverpool on Tues, Sheila? Guest speaker talking about side effects and then a chat session. Perhaps you may be able to make it???
Keep as warm as possible, girls. No snow here but very, very windy.
Liz xx
Hello Everyone!
It was good to ‘meet’ some of you on live chat this week. I have been reading through the posts and finding your experiences helpful. I have now been on Everolimus for two weeks. Early days but hoping to tolerate this well. Wishing you all the best with your side effects and your scan results. R.x
Hi Robin,
Good to see you found your way to this thread and that you joined the chat this week. Please let us know how you get on with the drug etc.
I have a blood test on Weds, zoladex implant on Thurs morning and then all being well, I should get month 2 of the ever/ex pills and my denosumab jab on Thurs afternoon as well as being seen in clinic. Might be spending a lot of time at hozzy this week but at least it should all be done at once.
Good luck and keep warm!
Liz x
hi all, if we are already taking evorilmus i presume they wont stop funding for us, what do you think? maybe the results of taking are not as good as predicted. does anyone know or how can we find out.
welcome robin. mags