Welcome Robin.Hope you have good results with the combo. As Liz says, keep us informed.
Liz, I can’t get to the meet up next week as i have just finished work and have a few things to do . Hope you will be having another soon as I would love to come next time. Almost snowed in this morning! Itisn’t the amount of snow but the strong winds that have blown it into huge drifts! My daughter is picking me up in a while to go shopping. She has a Vitara so it is not bad in the snow. Is it any worse where you are?
Brighton Belle, I think I read that it was partly because of all the side effects that NICE are rejecting the drug at the moment. The trials showed that it can work very well, but like everything else it doesn’t work for everyone.
Hope you are all keeping warm and cosy. Spring can’t be long now can it??
Take care, Sheila xx
Hi Everyone,
Lots of snow here too and very deep where it’s drifited.
Brighton Belle I read several articles this week about the NICE decision (or not so NICE!! sorry) and anyone on the everolimus through the Cancer Drugs Fund will continue to have it so long as it’s working. My worry is that Cancer Drugs Fund was only set up until March 2014 and the 3 year trial of it will be monitored so I wonder what happens to our ‘funded’ drugs after next March??
I’ve been on the everolimus/ exemestane combo since December.
Have a good weekend
Karen x
Afternoon ladies!
Sheila - the meetings are once a month so plenty more opportunities to catch up! Karen - are you going on Tues? I am as long as the snow doesn’t stop me, not that we’ve any here at all. I have come off fb by the way as I couldn’t be bothered with it at the mo but will continue on this thread and the bone mets one and on live chat. Hope to catch up with you in Liverpool anyway.
NICE funding. My understanding is that if you are already having it funded via the CDF like we are, then we continue with it for as long as oncologist thinks it is working and still suitable. BUT like you say Karen, drugs fund only around til next March so what happens then??? I had heard that this combo had been so successful on trials that they had stopped the trials early so it could be made more widely available and get formally approved for use on NHS asap. However, I’m sure I read somewhere in the NICE docs that they wanted more evidence to prove it works (I think that was the jist of it). Catch 22…
Liz xx
BB have been wondering how your gastric SE are on 5mg? Better I hope. I went down to 5 mg after awful D&V, which kicked in 6 weeks after I initially started. Had to stop even the lower dose 5 days ago yet I still have diarrhoea if and when I eat and feel sickly alot. My onc. doesn’t have any advice, told me this week that I’m the only one of his patients still on it because of intolerable SE. Hmm. Now I’m wondering if its the Examestane thats causing my problems. I emailed Novartis for any advice who fobbed me off with a very unhelpful “ask your doctor” You’d think they’d have a vested interest in people carrying on with their very expensive drug. Oh well, at least I’ve lost a couple of unwanted kilo’s. Every cloud …
Sheila, not long left at work, hope you’re feeling good.
Love Kris
Liz
Glad I found you - had just posted on FB that my acount was playing up and I’d lost you LOL.
Waiting to see what the weather is like on Tuesday - we still have a LOT of snow here. Am back at work Monday for a training day and then back in on 8th.
Hope you’re ok
Karen xx
oophs sorry, when i said to pills i ment one for dia. and one for nausea s.e. you can take both at same time. hope that makes sense. sorry. mags
Hi Kristine, my side effects are better. when i get dia. i take one tablet then i dont go to loo for 4 days (sorry to be graphic but we do need to help each other with s.e.) then i am o.k. if it happens again i just take another pill and we will see if this will be on going. i talked to a chemo nurse which was helpful as i was in a dilemma as i was feeling nausous when i took pill for the dia. i thought i couldnt take both tablets but she said dont ever feel nausous just take the pills they work seperately and differntly from the dia pills. i never used to take pills for anything before not even for the odd headache, so would try and bear it, but i have changed now and will take a pill for one side effect and another for the s. e. that are caused by those s.e. i know it is barmey but i got so depressed about feeling so grotty to the point of thinking of stopping medication. but i do want to keep taking it so this is what i do. i got some gelclair for the mouth ulcers and have changed mouthwash to diffflam it s green and doesnt stain your teeth like chlorhexidine. i got the dia and stomach cramps when i had the break of 2 weeks of the envolmus so t could be the exerstene. got a scan next week so hopefully things will be static. i really want to stay trong but find it hard especially reading about bernie nolan andmy lovely brother in law has just been told he has prostate cancer. so we have to kee tryng these drugs and hope it will work for us. sorry to have gone on so much hope it helps. mags xx
Morning everyone. Still bloody cold!!! 
Been out with the dogs though. Dont get any peace until they have been.
Liz, Keep me informed about the next meet up wont you. Unless it is the day I am at the hospital I will be there.
Kris, Just this week! And I am officially on leave so not working but have to go in to sort all my stuff and there is a lunch for 4 of us all leaving at the same time so that will be good.
Sorry youare still having diarrhoea and feeling sick. It could be the exemestane couldn’t it. I wonder if they could keep you on the evorilmus and change the hormone tab. Have you had any anti emetics. I had them at first as I felt nauseous but thats gone now and I am eating well.
It’s funny that your onc said that you were the only one still taking the Afintor because mine said the same when I asked him if there were others having good results. Obviously there are others on it now. This was back in Sept or Oct when I had my first scan results after starting it. I think there are a lot of people who can’t tolerate it but I definately feel much better now than when I started on it so I hope you can manage to stay on it and that you feel different in a couple of months.
Take care everybody. xx
Afternoon all,
DON’T read this if you are about to eat!!!
It is very interesting to read about your experiences with dia and sickness etc (does that make me sound odd???!!) . I haven’t had dia but the onc I saw the other week said the side effects he’d seen had been skin rashes and dia. Not sure whether it’s the constipation from the pain relief patches that is stopping it so to speak. The Macmillan nurse I spoke to doesn’t know anyone on this drug combo but did say that the strong painkillers in whatever form, slow your gut down so much. Paul and I went out in the old car this morning for a drive (as you do on a Sunday!!) and on the way back I was suddenly very violently sick. Bless P, he cleared it all up and disinfected the car and my handbag. Good job it wasn’t one of the posh cars we had gone out in. I went to the loo and cleared my bowels for the first time in 5 days and then had a kip in bed for 3 hours. Wonder if my whole system was just blocked??? Mind you, since starting on the drugs, I haven’t felt anything like hungry and just have small meals.
I too was wondering if you can have the everolimus with a different AI, say arimidex or letrazole? Or has that not been trialled? I can only guess. Could be interesting if someone can’t tolerate one of the AIs but is ok with another . I’m at clinic on Thurs so will ask. Going to have to take a long list of questions and notes of experience! Will keep taking it as long as tolerable though and hopefully things will improve - one of the nurses I spoke to said they had had some good results and one of the oncs really rates it. Here’s hoping!
Enjoy the rest of the weekend.
Liz xx
Hi Liz,
Hope you’re feeling better after this morning!!
As far as I know we can only have everiolimus with the exemestane. I was on Arimidex for 4 years from primary and onc wouldn’t let me start exemestane in advance of everolimus - I had to continue arimidex until I could start the trialled combo together. He said that was a condition of being given it and the trial was these 2 working together.
Snow is melting now but freezing under foot - I fell completely yesterday and have a sore back, arm and bum today - hope no major damage to bones done!!
Karen xx
Liz I have the dreaded c… but I put it down to the painkillers.Funnily enough(although not that funny as I hate being sick) but I was really sick one morning last week.Had been nauseus for days and hate sickness meds,did however feel much better afterwards and was luckily at home…poor P.
I was at clinic the following day and mentioned the sickness,and did also mention that I had felt the same way when I was taking the exestemane on it’s own.Registrar said nausea was not a known side effect of exestemane and it must be the morphine causing the problem.I am not sure she is right as I had the nausea before starting the everolimus or the morphine.I am sure the dreaded c… is down to the painkillers as I have always had that problem,movicol usually works eventually.
I have already exhausted letrozole and arimadex so exestemane the one I would have to go with.I have a scan in 2 weeks time and hoping for good results…will live with the se’s if the combo is working.I feel really exhaused at the moment and think that is also probably caused by the morphine/gabapentin combined with everolimus…so difficult to match each se with a culprit and cause.
Karen hope you recover from your fall and no damage done.
Lynn xx
HI, i started on exemestane 2 weeks before everolimus, had no side effects until the day after everolimus which was nasea. so intresting isnt it. the hospital shoudl get us to do a diary, some start at different times. i am not on pain killers… but when i was of the everolimus for 2 weeks and still got dia but it could be the everolimus could still have been in my system. on 5 mg ulcers are much better than on 10mg but early days but so far much better and i am feeling a lot bettet than before. love to all mags
Oh Karen, I do hope you didn’t do yourself a nasty injury. Arnica for bruising.
I felt a bit better last night but feel nauseous again this morning. A few itchy bits on body but they can be managed. Hints of mouth ulcers but not really appearing. This is a real rollercoaster but at least I have you guys to share it with and clinic on Thurs. Perhaps a half dose may be an option and then back up to a full one in due course…
It is interesting to see and hear now that there appear to be concerns over side effects and so many people have come off it because of that…I will always persevere if I can put up with se but if they are too much then I will see what alternatives are possible. Was supposed to be going to a BCC Liverpool meet tomorrow with a speaker on side effects so that would have been very apt but it’s too far for me. P did offer to have a bucket in the car just in case!!
Hope you all have a reasonable day if not a good one.
Liz xx
Hi BB, thanks for your answer, Did your Onc. recommend you have a 2 week break from Everolimus when SE were at their worst. Its just that mine didn’t really say, I have 5mg ready but I still have diarrhoea 2 weeks on, however its 1 week since I stopped the Everolimus. I can’t imagine the effects are still in my system and yet if I eat then I’m running to the loo. I have taken upto 8 immodium a day plus 12 codeine phos in 24 hours. Its really getting me down now, because its hard to go anywhere for long or enjoy a social life. My kids are home from Uni for Easter and I really want to buck up and be able to cook Heston Blumenthals leg of lamb with garlic, rosemary and anchovies next weekend!!
Happy Easter Everolimus people and Happy Retirement Sheila xxxxxxxxxx
Thanks Kris, I certainly will enjoy my retirement. It’s great to think I can just do what I want and not have to worry about work. It was getting pretty stressful and if you dont feel 100% sometimes you still have to get on with it dont you? Trouble is I keep forgetting what day it is!! I definately need my diary even if it is only for hospital appointments and lunch dates with friends!
I’m sorry you are still feeling bad. When do you see the onc again? Maybe there is something he can give you. Could you ring one of the chemo nurses? Hope you have picked up by weekend. You sound to be a good cook.
Liz, Hope you are better soon too. I hope you can both get over these SE and stay on the evorilmus. I haven’t had the big D but I did feel very nauseous at first and vomited once but am fine in that way now. My body hopefully has adjusted.
Happy Easter to you all. Sheila xxx
Hello All
Sorry to hear some of you are suffering with side effects. Hoping it’s worthwhile for all and we get good results from this treatment. Liz, I am taking Everolimus with Letrozole. I understood it could be given with any AI even though it was trialled with Exemestane. So far I am feeling fine but nervously reading as it sounds like you all started ok and that se’s build up. I like the idea we will adjust.
Take Care, R.
zola how long have you been on e and e. kristine my onc said to come of it if side effects were to bad when i could hardly eat they said to come of it and go bace on as soon as i felt i could. have to say my ulcers are gone today i am feeling so much better. when i had dia i only took one tablet they gave me and it stopped so was your imodien from the hospital or from chemist, mine was fro chemo dept ad maybe they are stronger. perhaps you could get and get something different. maybe half dose 5m.g maybe the answer girls, ill let you know if the s.e. come back. x
Evening!
Robin - interesting you are having it with letrozole, you’re not a private patient are you?? Another question for the clinic…
Have slept or snoozed quite a bit today and still not eaten much. It feels like a couple of mouth ulcers may be coming back and the funny spots are appearing round my neck again which makes me wonder if rash will flare up. Just been talking to my sister and she wondered if it might be anaemia as she was tired all the time when she was ill (something different) a few years ago. It had crossed my mind and I know it is a common se but blood test on weds should reveal anything like that.
Well, off to watch part 2 of Corrie if I don’t doze off and may catch some of you on live chat tomorrow night. If I’m not on, you’ll know I’ve dozed again!!
Liz xx
Hi Mags,
I started on the combo at the end of July last year. I had loss of appetite and mouth ulcers and nausea at first and was quite tired but things have definately improved. Still get tired sometimes and still get the odd mouth ulcer and I now have very very soft nails. Makes you wonder what will be next but all SE are manageable so will plod on as long as I can.
Hope you get over yor problems. Take care.
Just got home from yoga. was goingto try to get on live chat but have never done it before so would probably not make it in time!
Hi Zola
Was interested in your comment about nails. Mine have gone softer and keep splitting and have ridges running down them. This has only started in the last week. Do you use anything on your nails?
Karen x