I am starting it today!!! Dreading it as like everyone else I read all the SE on the leaflet.
Will report back in a few days.
John......I have just stumbled on your post. As a reader I do browse, but am myself starting on capecitabine. I was on docetaxel last year and suffered from mouth ulcers, strangely after coming off it! The only thing that worked for me was called Iglu, which is sold at all chemists, usually beside bonjela which did nothing for me. I also tried gel lair and difflam. Gelclair burned, and difflam was quite good for about 10 minutes. Iglu ‘sets’ where you put it.......just a little on the ulcer. It gives welcome relief from rubbing, and allows healing beneath. The leaflet describes exactly how to use it. It’s a small tube, but you only need a tiny bit for each, smeared carefully. It sets in contact with saliva. Like a gentle glue. Like me you may just be prepared to give something new a go. Thought I’d share. It worked for me, but everyone is different. Good luck!
I've been on this combo for nearly 2 weeks. The last week I have been getting ulcers and have Gelclair and Difflam to help ease the misery! I'm going on holiday next week and my Oncologist has said I could stop taking Everolimus if getting bad side effects. As I have a particularly nasty ulcer on the tip of my tongue I'm tempted to do this but maybe it will take a while for my mouth to recover? Also presumably I am going to hinder its effectiveness? Any advice would be welcome please? Ps I'm also aware of more fatigue than when I was Letrozole.
I'm just reading this conversation with interest. I was put on this combination of medicines about two weeks ago. I took it for nine days, and then had to stop. I cannot describe the agony I was in. My tongue felt as if it had had the skin stripped off and all the nerve endings exposed around the side of it. Underneath the tongue (the frenulum and lingua frenulum, I think) it was a virulent red, with some stark white patches, which look now like ulcers, but which I couldn't identify at the time. They looked exactly like another row of teeth growing under my tongue, with these violent red lines around and through them. I had ulcers on my tongue and inside my lips. I thank heaven that I stopped taking them when I did, as the effects continued to build after I stopped them. My bottom lip went completely numb, and part of my chin went numb, and looked swollen. I am still dribbling uncontrollably, and have to sleep on a towel. More ulcers continued to explode into my mouth after I stopped taking it. I keep seeing different doctors and being given different things 'to help' but the truth is that nothing except strong pain killers begin to touch the pain I'm in. I haven't been able to eat solid food for a week, and am often very hungry.
Tips for anyone who is suffering. (Some of these may have been said already, but I'll put them down as I think of them). Half a teaspoon of salt dissolved in half a cup of warm water. I don't think it has to be warm though. I've used this cold, if I've had some left over.
Sage tea. I've always used this for sore throats. It's incredibly healing. Drink it, gargle with it, hold it in your mouth for as long as you can. (i've found it easier to do it in very short bursts! Same with the salt.)
My daughter got me some breakfast shakes. I didn't know such a thing existed. They're completely liquid but nourishing, as they're meant to serve as breakfast. The ones she got me are 'Weetabix on the Go', but there may be others.
Soup is an obvious one (and for idiots like me who think it has to be fresh there are tins out there! Chicken soup - smooth! - is probably the most soothing.) I've only just worked out that, if you buy bread that is soft in the middle you can scoop the middle out and soak bits in your soup. (Beware - a lot of bread is quite hard, but crusty bread is usually soft). I do masses of tiny pieces in the bottom of the bowl, and it's a bit more nourishing than it would be without it.
Porridge. I'm on my own and usually can't cope at breakfast time. I've been staggering out to a local cafe that does porridge with banana and maple syrup. The banana is cut very fine, and sliced in the porridge, and I add lots of cold milk. It takes me a long time, but it does make a meal.
I've been taking three different painkillers, and - as my digestion is also affected - I worry about the ibuprofen. When you're not having meals it's hard to take it with a meal, but I try and take it with a glass of milk if I can't eat anything.
So, just off to see the GP again, as it's still too painful to eat, and I want to know that my chin and lip will go back to normal. My mother revealed yesterday that her sister (my auntie) didn't die from her cancer (which was the same oestrogen receptive type as mine): she died from a drug that was being tested that caused her stomach to become ulcerated, as well. (This was 1997). I have had many serious problems throughout my life, but only a broken elbow that was allowed to swell in the plaster as I slept was a comparable degree of pain. I'm pretty stoical, but I kept crying with that, and I keep crying with this. It is terrible, and anyone who has mouth ulcers, swelling, vicious redness (check under the tongue too), and who can't eat without intense pain, should talk to the doctor about changing medicine. Drugs can kill, and I honestly think this one would have killed me if I hadn't stopped it when I did.
Incidentally my sister in law has just told me that her father also died of ulceration and bleeding from tablets he was on for arthritis. (Methoxetrate, which is also, apparently, prescribed when women have ectopic pregnancies.) Some people can take them with almost no effect, and some they kill. I think doctors are still very cavalier about what they prescribe (but my sister, who did apparently know about our auntie) refused every kind of medical help and died a very painful - and unnecessary death). Use discrimination, but if this medicine is causing you unbearable suffering you definitely need to change. If you've run out of choices then you are the only one who can decide.
I hope this post will be of help to others. Sorry to sound so bleak.
A close friend aged 74 had been on everol after sandostatin stopped working for neuroendocryn tumor.
After a few days the side effects started - rashes, sore throat, mouth ulcers, extreme fatigue, lack of appetite, hot flushes/reddening of the face. Further medication was prescribed to combat some of these.
After six weeks she chose to stop taking this or any other drug as it was disclosed by a consultant (one of many, never saw the same one twice!) that it would not help prolong her life.
It's been about six months since she made this decision but still some of the side effects continue, namely hot flushes/reddening of the face and fatigue.
Overall she feels better at having stopped but had she known the side effects would be this bad she would never have allowed herself to be persuaded into taking the drug. She was told it was not being given as a trial drug although one consultatnt said it was.
I hope this will be of use.
Does anyone out theer know of difference between 5mg and 10 mg of everolimus. I was put on 5mg only for 3 months. Cancer progressed so was stopped. WAs told if it didn't work at 5 mg it wouldn't work. However i am 5ft 8 and weigh 87kg . Been reading effectiveness depends on body weight. Any thoughts?
Hi all you EE ladies. I have just had results of scan after 6 cycles of Eribulin (my second time with this drug, I had 7 cycles last year). Scan showed 'pretty much stability" with a good response in the liver but not such a good one in the lungs. I had already decided with my Onc to take a break as I have had so much chemo over the last few years and my body feels worn out so I am going on holiday and not having any treatment (except for Denusomab) & then another scan at the beginning of July to see what's happening.
My Onc has mentioned the EE combo. I had Exemestane way back in 2007 when I was still ploughing through the hormonal treatments. My question is how much treatment have you already had before trying the EE regime? My oncologist seemed to suggest that it's normally used earlier on & I just wondered whether anyone has had a good response after a number of other treatments have failed. (After hormonals I have had Faslodex, FEC, Abraxane, Capecitabine & Eribulin twice)
hi, ive been on the E/E combo since sept 15 and i had been doing really well on it, no mouth ulcers just some nosebleeds and rashes. however for the last week i have been experiencing episodes of shivering, shaking and feeling really cold, i can feel like this once or twice a day, feels like having a really bad bout of flu. also im struggling to get up in the morning as i feel so weak and unwell, again like having flu. i can lay in bed til lunchtime some days as i just havent got the energy to move. once im up tho, after about an hour i feel pretty much back to normal. anyone else had this side effect, if thats what it is, and will it settle down in time. im on 10mg, the full whack and my first scan was positive so want to stick it out if i can
Hi to anyone reading this thread I want to correct my last post.
I saw my own onc and she was annoyed with the ward Dr's remarks about e/e stopping working she told me to continue taking the e/e as it was a slip disc causing me the pain and the bone met had not progressed. She wanted to recheck my June CT scan and MRI with a radiologist and she would phone me with the results which she did. They had examined both scans slice by slice and everything is still stable. So I am still on e/e getting the spots back and flacky nails so long may it work for me I hope I give hope to fellow e/e sufferers. xxx
Well goodbye to e/e combo after 15 cycles of tablets 4 stable ct scans and told I am a long timer it no-longer worked shame I really wanted it to work for longer. But after an emergency MRI which I ended up staying over night for could have been longer but I wanted to go home. The consultant informed me the tumour in my back had progressed up my spine there would have to be a meeting of all the onc's at the hospital to decide my next course of action as it was Friday the following day and he didn't know when they would be all together I said my onc was going to see me next Wednesday. I didn't want to wait around especially as it was the weekend coming up and I knew they wouldn't meet then. He kept on remarking how well I looked and was supprised by my cheerful atitude but why not I know one day the end will come but I am not ready to go yet there are other treatments to try.
The reason for the emergency MRI was because my legs have been causing me more pain than usual and I find it more difficult to walk as onc had noticed she was worried about compression on the spinal cord. I do have MS and it is difficult to know what pain is caused by that. The results showed my MS was stable so my pain had been cancer and it was because I asked her if the spine met could cause leg pain. So please be aware of leg pain if you have a met in the back.
I wish you all well on this treatment and hope it works for you goodbye Rose xxx
Hi Sresshead I've posted in skin mets. I don't honestly know how good this drug is maybe being stable for so long must be good. But I really need to have a word with my onc next week because things are changing in that area I wish we could have some vanishing cream. Got to keep smiling hope you find answers to your questions take care love xxx
Marie rose..glad to hear you got good results. I have been looking into the e/e combo to see if it would be any good for me. I have skin mets which appeared 2 years after my primary when i was taking exemestane, so it had obviously stopped working. i was thinking of asking my onc if, as it worked for 2 years, it might work again in this combo. he does seem reluctant to 're visit' treatments. I have been on all the hormone treatments except faslodex and had armdex fo a short whlle and wondered if either of these cold be sed in the combo?? never heard anythng about it so assume not. Maybe you knowledgable lades out there may be able to help. xx
Hi if anyone is looking on this thread I just wanted to post my scan was stable again having had 14 cycles of everolimus. I asked the onc how successful is this treatment she said well you are stable and I am classed as a long timer so I hope it gives hope to others best wishes xxx
I've been on e/e combo since 23rd July last year 3 ct scans stable now waiting to see if 4th will be the same have to wait 2 more weeks for results no se's now but I have been through it with various se's. Oh I tell a lie my nails are bad very flakey and splitting downwards. One thing that worries me is how many success stories do you hear about this combo!!!!!
Thanks Stillhere, I must have been typing when your reply came through! Good to know that several people have found it ok and not a real drag. I notice you are coming off Capecitabine and would be interested to know if that's because it's not working as well after 2 yrs? The one week on one week off sounds good, so I will mention it to my doctors at Guy's. Best, Julia
Thanks Nicky and Elily, Thanks for your prompt advice and words of encouragement about Cape. Since I failed the entry for the Ruxolitinib trial, I've asked to be considered for the MANTA trial. If that's also a 'no', I have decided to do Capecitabine, as my oncologist said that they often get good results on people with invasive lobular like me. Thanks too Elily for mentioning that you are still working, as I'm off at the moment but will need to go back in the next couple of months before my sick leave runs out! Best wishes, Julia
I've been on Capecitabine twice so far and have found it to be pretty tolerable. SEs include hand/feet (plantar plantar?) so it is important to keep these well moisturised, nasty taste in mouth/dry mouth, but little else. I had been on Letrazole and Tamoxifen, neither of which worked for me and made me exhausted. I was worried about oral chemo, but within two days of starting my energy levels had increased massively.
I work full time and have a 4 hour hour daily commute and a fairly active life otherwise.
Hello All, I've been reading about your se's with great intent, as yesterday I was told that the Letrozole that I've been taking for the last three months has not worked (big tumour in left breast hasn't grown but extra lesion showing on liver). I've been offered either E&E or Capecitabine, and need to make up my mind by next Wednesday. I just wonder if any of you have had Cape on your travels, and how it compares to E&E? I obviously want something that works but would prefer that it's not one that reduces me to a husk... any experience/comparison of the two regimes greatly received! Julia
Hi Jo sorry to hear you are in that dark place I know what it is like. Someone once called it the devil drug and i've got to agree I got really down after the first few months and thought is it worth it but over time the se's get easier and I also take Boots re-energise instead of borocca (don't know if thats spelt right) I was feeling so down at one point and someone recommended it and I found it really helped. My mouth and throat were so bad the onc put me on 7.5mg and I have had 3 stable CT scans and now waiting for results from my last scan in 3 weeks time. I do hope you get on ok on thursday best wishes xxx
Hi Jo I have friend who had really bad diarrhea only came on with the e/e onc dropped the doze but it still continued the onc decided to take her off it altogether. I've been o.k yes I have had diarrhea but not often I have still got the same box of tablets for it with only about 4 missing and I am now 12 month still on e/e. I do get loose stools and fire bullets at times but I have learnt to cope with that. I hope you don't have too much trouble with it and it settles down soon best wishes xxx
Wishing you lots of best wishes for your results lets hope its good news I will keep you in my thoughts let me know how you get on xxx
Hi Sam I am almost up to my anniversary next month. Your itchin is normal and your aches and pains can also be part of it but see your GP if you are concerned. I have been on 7.5mg since my first month due to a very bad case of mouth ulcers and 3 CT scans have been stable I am due for another next month. Side effects do get better with time hope you manage the Devil drug o.k best luck xxx
Our Scottish team is giving evidence to the Scottish Medicines Consortium on the drug everolimus (Afinitor). This evidence is to whether it should be used on the NHS in Scotland. Would you share you experience in writing with our team please?
Head of Scotland
Breast Cancer Care Scotland
Robertson House, Ground Floor, 152 Bath Street, Glasgow, G2 4TB Direct line: 0141 353 8344 Switchboard: 0141 353 8330
Hi Jackie sorry to hear the sore mouth se got you it does get better as time goes on I still get the odd ulcer 9 month on but nothing like that first month. I read the threads from no 28 onwards and found them useful especially Zola who later became known as Roxy12 I think she is someone to be admired she went 16 month or more. Maybe you may find them useful too anyway best of luck and I will be thinking of you love to you xxx