wow… Reading through this feed i can see that no one has heard of Orabase!! OMG! Spread the word to your friends AND doctors! I had to tell mine about it!
I have been on the combo since Sept 2012 and my ulcers only came a couple of weeks ago. Sounds like i had a good run but my consultant told me it gets better and as with all the meds, the body finds s way to deal with the side effects and they will go xxx
yey! X
Thanks for the tips on mouth ulcers, especially Julie28. I didnt get them at all with FEC 5 years ago but got a couple of small ones at the end of my 2 weeks on Capecitabine 
Having never really suffered with them at all it’s good to know what works, I’ll also get some different things in for OH, who gets them quite regularly. BTW a lady came up to me just now in the supermarket as I was looking at mouthwashes and said she was a nurse and the best one is Cordysil (sp?) I know most of you know this but, if you have to buy it, rather than being able to get it on prescription, she said a certain high street chemist has an offer on it at the moment, with quite a bit of savings.
Nicky x
Brighton Belle - am further up North than Coventry, in Lancashire so Coventry is almost South to me!!
The Gel Clair I have been prescribed and now have in my possession seems similar to the Orabase in that it provides a waterprrof protective cover over the ulcers and mouth. It is a mouth rinse but you can also apply it ‘neat’ directly onto the ulcer if it’s difficult to wash round your mouth.
Liz
hi lizcat, yes you are a long way from coventry and even further away from brighton. thanks for advise for ulcers i will try this. can u get it on prescription or do u get it from the chemist, thanks again. mags
prescription.
oh great thanks x
on kindle so short reply!!
Just to say “fingers cossed” I haven’t had a mouth ulcer for about 3 weeks! I had them pretty constant from starting on this combo with only short spells free of them so I am hoping that I wont get any more. I have been on Afinitor/Aromasin for 8 months now so maybe my body has adjusted. We shall see!
Now only having salt water mouth washes twice daily. Lizcat, I’m from Lancashire. Which hospital do you go to?
Lancaster but live in Morecambe, zola. Are you nearby?
zola thats great to hear as i wasnt looking forward to going back on it tommorrow. so if i can tolerate the side effects they will hopefully get better as time goes on. i will try all you have suggested and ill be ready for those dam ulcers! mags x
Zola so pleased you are having good results,stable will do me fine.I go to RM for my third months supply tomorrow,all things being good to go.Really hoping so as scan planned at the 3 month point.Also get my mri results…bit wary about those.
Brighton Belle so pleased you are starting your treatment again,are you having a reduced dose?I just have a sore tongue at the moment…have dental treatment later this week,I need a filling and clean,so really hoping things mouthwise do not get any worse.
L xx
Hi Liz. I am from near Oldham. I go to the Christie hospital and also the Royal Oldham both which are good.
Brighton Belle, Hope everything goes well and you manage the SE. My ulcers were pretty bad just after Christmas but they have gradually got less severe so am hoping they are gone for good.
Lucinda, Good luck when you have your scan. I had a clean at the dentist a few weeks ago. She told me the build up was chlorexidine so stopped using this as my teeth were discoloured but she did a good job.
Sheila xx
damm wanted to put this smiley face on end of my message and my messags dissapeared, snowed in here in brighton and supposed to go to hospital for treatment but buses arent running and im not going to drive in this, guess you wont be going either lucinda, dont know how you manage that trek up to london every month. i am going on half the dose of everolimuses so hopefully the side effects wont be as bad although when i did this on the trial drug i was on last year i had worse s.e. but wasnt on a lower dose, so heres hoping.
hopfully chat to you all on chat line tonight. is it 7.30 to 8.30
bye for now, keep warm mags x
Brighton Belle - tonight is 8.30 til 9.30.
Nice and sunny and no snow here, though there is a bit on the very back Lakeland hills. I’m hoping to watch the racing from Cheltenham this afternoon but it is in danger of being abandoned due to snow.
Advice please. The rash has got worse on neck and is now on torso, under right arm, at top of right leg and little dots on arms in sporadic places. Some of it is itching too and I do have very sensitive skin so this side effect isn’t entirely a surprise! Any remedies for the itching? Am wondering about aloe vera or calamine but deffo not steroids or E45. Or should I ring onc department or GP??
On a brighter note, mouth ulcers aren’t quite as bad so reckon they’ll go in cycles.
Speak later and thanks in anticipation for your advice.
Liz x
Hi Liz,
I haven’t had a rash or any itching but there is an “itch relief” cream you can get. I cant remember what it is called or if there is any steroid in it but if this is no good you might be better with a calamine cream. You could get this from the chemist which is probably quicker than getting something from the GP. You could also ask him/her at the same time if they can prescribe something. Steroids are best but it sounds like you can’t use them.`
Hope you find something. Sheila x
l
No mags did not make Sutton,coild not even get off the beach road as not gritted.So a free week of everolimus but still taking exestemane as get them from gp.Gutted about not getting mri results as pain in leg getting me down,feels like I have been kicked with heavy boots.Was hoping to get a decision about treatment plan today but will have to wait another week.I actually don’t mind the trip to RM as I have confidence in them which I did not with previous onc.We always have lunch in a lovely pub on Epsom Common so turn it into a day out.I do have zometa locally which saves another trip and also means I have contact with local hospital.Have tried chat but can’t keep up,will have to give it another go.
Lynnxx
Hi Liz
just wondering if this itching/rash is an SE of Denosumab? I was given the leaflet after I had my first one and have just been checking it about Calcium levels. One of the rarer side effects is a rash, itching, hives which can be an allergic reaction. Hoping that this isn’t the case with you but I thought I’d mention it.
Nicky x
Hello Sheila and everyone else posting on everolimus. I’ve been taking it for 8 weeks without much problem , apart from some nasty mouth ulcers the first few weeks (none since). Then I started having diarrhoea at the weekend, which just wouldn’t settle despite Immodium then codeine phos. I started feeling really awful with the most crashing headache that just wouldn’t shift. Yesterday I stopped the everolimus and spoke to my GP who came out and took bloods, she thinks its viral, I don’t.
Today I was supposed to see Onc. but still not feeling well then it snowed so much roads were closed anyway. He rang to say stay off it til I see him next week. I’m really disappointed, I expected SE and just like with chemo put up with/handle them. I have such high hopes for this drug that I feel panicky about being off it at all.
Just thought I’d post my sorry little story as no one else has mentioned stomach SE.
Kris
Hi Kristine, Good to hear from you but sorry that you have been unwell. I know that you can have bowel problems with this treatment but also my onc has told me that because it interferes with your immune system you are more likely to pick up infections etc. So it could be something like that. I hope it is because if you feel better in a few days maybe you could try it again. It would be a shame to have to stop before you know if it is working.
Hope you are soon feeling much better. Take care Sheila x
i started taking exestamene 14 dec. then the evoilmus 2 weeks later. have been of it 2 weeks as s.e. tomuch maily mouth ulcers. but also 3 lot of dia one lot of sickness. plus stomach ache and nausea. i went to hospital to get my zometa treatment and collect new lot of evolimus at 5mg insted of 10mg so hopefully lower dose will keep s.c. down but they gave me 10mg by mistakes so waaaiting to see what to do. but i am still getting stomach churnig and occasioal dia. so this could be a s.e. from the hormone exestamene and not the evolimus. which i have carried on taking. im going to hold of the evol for another weekk to see if s.e. go. i know the ulcers are definely from evolimus but maybe not to blame for all s.e. but my back ache has gone, i have had it from day 1 of sec. dia. had it everyday. so that fantastic news. mags x