anyone on everolimus/exestamene got advice on se's ?

I started taking everolimus/exestamene nearly 3 weeks ago and was doing quite well until 2 days ago when I woke up with a mouth full of ulcers.Onc was meant to put mouthwash on my script but forgot and as I had a late clinic appointment it was too late to do anything about it.Just wondered are there any over the counter mouthwashes you can recommend?
I have dry skin and rashes,but had that on letrozole anyway so have E45 and aloe vera for that.Other than the fatigue I am coping quite well.
As there seems to be more people now getting this treatment thought it might be a nice idea to have a thread dedicated to hot tips on how to deal with the se’s.
Hope you are all doing well and have a lovely weekend.

just bumping to get into latest posts xx

Hi, I’ve just been using bonjela but I am going to ask for mouthwash on my next appointment
Karen xx

thanks Karen, I remembered I have some of that in the bathroom cupboard so I will give that a go.Have tried corsodyl mouthwash but that not helping much.salt water did give brief relief but not with the huge ulcer on the tongue …hasn’t stopped me moaning though but eating is a bit painful.


Hi Lucinda,
I have had mouth ulcers several times and have found corsodyl the best for getting rid of them although it seems to take about 10 days for them to heal once you have them. Mine have just gone thank goodness. The G.P. said that you just have to wait for them to heal and prescibed me co-codamol for the pain which did help. Am now using salt and sodium bicarb mouthwashes 3 times a day to hopefully prevent them coming back! Also ginger tea as advised by Kristine on this forum. Iquite enjoy this now and hardly ever drink ordinary tea.
Hope you soon get rid of them. Sheila. x

thanks zola I have been using corsodyl for a few days and they seem to be getting better.I also remembered that when i was having taxol I used to eat fresh pineapple cubes ( I even used to freeze them).have tried it tonight and mouth not so sore.Something to do with enzymes in the pineapple. Hope everyone is coping without too many se’s.

L xx

Went to clinic today,got second months supply of everolimus.My registrar had just been to a conference and the main point of discussion had been mouth ulcers. Her advice was to use a baby toothbrush and toothpaste.Corsodyl was thought to be the best mouthwas providing it is non alcohol and diluted.She recommended taking dispersible aspirin and using salt water wash for daytime use and the mouthwash at night.Will let you know how it goes.

Lynn xx

Lucinda we must have been in the clinic at the same time yesterday. Are you under the MOB team? It really was extremely busy. We had a slightly later appointment at 1145, usually there at 1030 but as you know clinic often runs over!!!
Have a good weekend…I hope your mouth isnt too sore.

Hi Mel I always have clinic in the afternoon but my appointments seem to be getting later…3.15 last week so often only just make pharmacy as they will not do script until blood results back.My mouth is much better now…regisrar suggested taking disprin twice a day and seems to have helped.Problem now is I woke up this morning and my face is covered in a rash…cross between measles and a bad case of acne.Have tried aloe vera,E45,germolene and nothing seems to be working,had to find some concealer before I could go out to lunch and even then made sure we had a corner table! Oh says I am getting paranoid,but he is the one keeps pointing out the rashes.Anyone had this problem and if so have you found a solution.
Hope you are all doing well and enjoying some sunshine.

L xx

Hi ladies - assuming the funding is approved I’m going to be joining you on this combo after spread in bones. Hopefully the side effects will be manageable after the initial dose. The onc I saw today was stepping in to help with an over-running clinic so wasn’t my usual one but he was very nice. He said the side effects he’d come across were mostly skin rashes and diarrhoea (sp?) so we shall see.

Liz xx

hi. i have been on this como for 6 weeks on 10mg had to come of it last week as side effects were awful worst was mouth ulcerd even although i use mouth wash and loads of bongella. by the way there is a new bonselli that you paint on and it dries as a film over ulcer for several hours so will try that next. also had dia, sick once and nausea most days and fatique. felt so misrable on it. saw prof yesterday ad when ulcerds have gone going to g on it on a lower dose of 5mg. has anyone be on it longer than 6 weeks and do the side effects buid up and keep getting worse or do they subside. would like to keep taking it as my secs have spread 3 times since june 2011 mags p,s going on live chat soon so hope to speak to some of you

Hi Brighton Belle I have now been on the combo for 7 weeks.I have found that the se’s have been quite severe but then they subside quickly.My onc at the Royal Marsden has been working on the trial and had attended a conference on everolimus se’s when I last saw her.Her advice for ulcers is to get a baby toothbrush and baby toothpaste.Make a salt water mouthwash and try that or corsodyl daily non alcohol mouthwash.She also told me to take one soluble disprin twice a day(but you may need to run that by your onc).My ulcers started in the second week and have virtually subsided.I have had a bit of nausea,but did expect that as it is a chemo drug and it is nowhere like I suffered on FEC.My gp gave me anti sickness which do help and I try to eat small meals and nibble throughout the day.I had bad spots and onc said to stop it but as I have spread to liver am really trying to get through to 3rd month and see how it is working when I have scan.Like you I really want to stay on it so hope it works by reducing the dose.Are you still taking the exstemane as hopefully this will keep things under control for you.Re fatigue I am not sure what causes mine as I have just switched to slow release morphine and upped my gabapentin due to increased pain.Have just started acupuncture and hoping that helps me reduce my painkillers.

L x

hi Lucinda , it was great to hear about your symtoms, I use an electric toothbrush which has a soft and small head as i have a small mouth and find it is much easier to use that a normal toothbrush which is to big. This will probabley clean teeth better than a kids brush. i also use a mouthwash the hospital gave me although it seems to stain my teeth. is the disprin for pain although you say you are on morphine how long have you been on that.

where is your cancer and how long have you had secs, hope you dont mind me asking, I have it in 4 vertebrae and in my liver, but am keeping well and take no pain killers although I am in some pain but want to put off takimg painkillers as long as possible as i think our bodies get used to them and need more as time goes on.

will let you know if i go on a lower dose next week and see how i get on with the side effects. x

hi Shelia, how long have you been on this combo? mags

Hi Brighton Belle ( I assume by your name you live in Brighton,I live in Shoreham By Sea so just down the road)I was dx with secs from day one in May 2009…came as a bit of a shock.I have exstensive mets in spine,both hips,pelvis,ribs femur and now liver.Pleased you are virtually pain free, I have had pain from day one and have to admit it really gets me down at times.Yes my onc suggested disprin for the ulcer pain.I have only been taking morphine for a short time,my gp prescribed it when I had so much pain in my groin and right leg I am virtually unable to walk…it does not however help with that pain but has really helped with bone pain.I also take gabapentin.

Do pm if you want to compare symptoms or join up with some of the sussex sec ladies for lunch.

Lynn xx

Hi Brighton Belle,
I have been on this treatment since last July. I had a scan after 6 weeks and there was slight regression. I have had bout 3 scans since and all have shown stable although I think there was still a slight improvement to a lump I have under my arm. This was 11 mm last June but I think it is only 6 mm now. I will find out for sure in 2 weeks when I see the breast surgeon. My other mets are on my lungs and these remain “tiny”.
My SE are mouth ulcers like many of you. These come and go. I dont know which is the best mouth wash but I have had Mugard, Corsadyl, and a steroid one they gave me at the hospital. I have no ulcers at the moment but I always feel that my tongue is a little bit sore especially when I eat certain foods. I cant eat tomatoes for this reason. At the moment I am just using salt and water washes and these seem okay.
Other SE, tirdness,somedays more than others but I am functioning pretty normal. Nose bleeds when I blow my nose. Joint problems with the Aromasin. My latest SE is soft nails which probably started when I had been on the combo for 6 months. (I have just had Gels done as they were breaking for fun and getting on my nerves!) My appetite was poor to start with but it is back to normal and I had a bit of nausea at first but this has gone now.
If things stay stable, I could put up with all the SE for ever I think so fingers crossed. I saw the onc yesterday and said I needed cheering up. He said that I was doing VERY WELL so I said that would do! Take care and good luck. xx

hi everyone, glad to hear from you as I have been trying to find you after the chat line on tues. i couldnt post or find any of you. hopefully im up and ready to go,

Lucinda yes would love to meet, I live in Hove which is near you, it is good to compare symptoms, treatments etc. I chatted to think its lynn dovey she lives in brighton she is going toring me and then have a meet up, I mentioned you but i guess you have already met as she says few from sussex have had get toghthers.

Zola it was great to hear about your side effects. I am going for my zometer on tuesday and hopefully they will give me drug again but 5mg. will be intresting to see what happens as the trial drug i was on last year was very similar but much worse. I was the only one who went back on it and all the side effects that previously took over a month to come out, came out within 12 hours and worse. so they have stopped that trial. so i hope i dont have the same reatction next week. will let you know.

Lucinda not sure what pm is i quess it is a post, so i will try sorry im hopeless on computers but hopefully i will learn all the ins and outs of it all. mags x

Bumping for chicken.

Well I have done a week of ever/ex and have had mouth ulcers almost from day 1 but they are not too bad. Had a Macmillan nurse come to see me yesterday. Never had one before even though I’ve had bc and mets for over 5 yrs. She’s just phoned to say she’s getting a prescription for me for Gel Clair, a mouth spray as my mouth is very dry, some steroid pellets to put by the mouth ulcers and Difflam on repeat prescription. Brilliant. What with the new drugs, mouth stuff and 2 new lymphoedema sleeves on order, I’m bankrupting the NHS single-handedly!

Brighton Belle - I was on chat on Tues bjut live up north


can you let me know if these things help your mouth ulcers… I am going back on the drug next week at half the dose as my side effect have all gone now including those awful ulcers s0 anything that helps will be great.

I used to live in coventry are you anywhere near there? I moved here over 2 years ago now and I love it. mags

Hi there, not sure if these remedies have been suggested to you already but i use: Difflam, good old saltwater and a paste called Orabase. I used to swear by a paste called Adcortyl back im 2009 but it has since been discontinued. Anyway, the Orabase comes in a tube and its a tasteless gritty paste but when u put it over your ulcer it smooths out and makes a waterproof protective shield. And depending on where your ulcer/ulcers are is VERY effective. Hope this helps xxx i bought mine fr a Lloyds pharmacy and i suggest calling a few in case they don’t stock it. Orabase not Oragel xxxx