Hi everyone and thank you marirose for your info. I am feeling ok at the moment but have a skin rash much better now but onc sent me to a dermatologist who said he may be able to give me some pills to help with the rash especially if it come up when on the higher dose so feeling hopeful!
Hi marirose what great news from your scan it gives us all such a boost to hear that things are going well.
I lost weight when I was on the full dose due to mouth ulcers but have put on loads of weight lately, some was what I lost but put on extra 2 kilos in 2 weeks!x!x. Hope that dosen’t continue trying to eat healthy and less…spotty and chubby 2nd adolescence!
Hi Everyone
I’m posting for the first time after being diagnosed with bone mets a month ago. I’m on the E/E combo and will be starting Demosumab once I have had some dental work (had one dose of Zometa last month). I’m due to go to the hospital tomorrow for my next dose of Evorolimus. The SE’s were manageable to start with, a few nose bleeds and a rash which started on my neck and chest and has now spread to my trunk and legs but it’s the mouth ulcers I am finding difficult to cope with. I have loads on my lips and a few inside my mouth and eating solid food is almost impossible. I was given a mouth wash by the hospital as well as Bonjela but nothing seems to be helping. Can anyone who has been on this for a while advice if things improve or are things likely to carry on or even get worse? I’m keen to stay on the drug especially as I only managed to get NHS funding by the skin of my teeth but not sure how long I can put up with this. Lots of love to all of you fighting this xx
Hi Jackie,
I used Bonjela complete plus, which is a paint on liquid. At the first tingling of an ulcer developing I put it on and it helped loads! Stings to put it on but is good! I was fortunate in that I only ever got 1 ulcer at a time and they only lasted for about a week. They stopped appearing totally after about 2 months!
That was the only SE apart from tiredness that I had, unforutunaley E/E didn’t work for me and I had progression!
Good luck with the treatment
Glo xx
Hi Jackie I have been on E/E combo since last July had a very bad reaction with ulcers and sore mouth and throat I couldn’t eat solid foods and found it hard to talk. My onc took me off the medication for 1 week and then reduced the 10 mg to 7.5mg taken as 5mg and 2.5mg during my visit to the clinic for my Denosumab injection a nurse brought me sachets of a mouthwash called Genlclair this works really well as it is thick and you leave it in your mouth for a couple of minuets before spitting it out it helps the healing process it is hard to get hold off though not all chemists stock it I get the onc to prescribe it from the hospital pharmacy When the mouth is ok I use 1 teaspoon bicarbonate of soda with 1/4 teaspoon of salt I also use a gell called Gengigel and you can buy it from boots it has a agent in it called Hyaluronic Acid in which is supposed to be a healing agent. Also Boots have a ulcer pastille which give relief. Some people are lucky and don’t suffer so much but there are plenty of se dry throat is another it’s a lack of saliva eating mints and drinking water help alot. I hope I can be a help to you take care xxx
Hi All,
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?
Nicolas White
Head of Scotland
nicolas.white@breastcancercare.org.uk<mailto:nicolas.white@breastcancercare.org.uk>
Breast Cancer Care Scotland
Robertson House, Ground Floor, 152 Bath Street, Glasgow, G2 4TB Direct line: 0141 353 8344 Switchboard: 0141 353 8330
I had this combo from last Sept to this March ( did nothing for me though!) Hopefully it will work for you.
I had mouth ulcers to start with and only ever one at a time and by xmas they stopped altogether. I use a solution called Bonjela complete plus (from boots) that is a paint on liquid. Worked really well. I have also read that drinking Aloe Vera juice (2-4 ozs) diluted in anything twice a day works!!
I didn’t have D (won’t attempt to spell!) but stools were definitely looser.
Good luck with Glo xx
Like Nicky, I haven’t had experience of E/E but I have been on Capecitabine for 2 years now and have found it an easy chemo and am sad to be coming off it in the next month or so. I do take anti-sickness metocloprimide and moisturise my hands and feet but life hasn’t changed and I only see my Oncs once every 8 weeks. I have done one week on/one off which is not that usual but has minimised the se’s. I’m seen at the Marsden, Sutton.
I was on e/e from Oct to March and found it fine, a couple of mouth ulcers to start but they didn’t last long. Unfortunately it didn’t work and I went into Cape, which just didn’t agree with me at all! Apparently I didn’t metabolise it and it totally did me in! Terrible stomach problems, didn’t eat, lost loads of weight! It also didn’t work! But as Sajmitch says everyone reacts differently to treatments! I am currently on weekly taxol with very few se!
Good luck with which ever route you go
Glo xx
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!!!
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
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
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 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
Hi Marirose. I’m due to start on e/e in 9 days time after scan results yesterday showed progression (I’ve previously been on tamoxifen and anastrazole) Having read this thread I feel pretty well versed on the SE’s so off down the shops today to buy baby toothbrush, toothpaste and mouthwash! Just wanted to ask if you’re still on this and how long it has worked for you? I’ve always had progression and desperate to get some stability! Are you on the full 10mg dose or have you had to cut down? I’d be really grateful to hear others’ experiences. Thanks! X
Hi Tomboy
I am now on Capecitabine Everolimus stopped working after 16 months I had 4 clear scans my mouth was so bad the onc dropped me down to 7.5mg after the first month. Because I began to manage the se’s I wanted to go back onto 10mg but because it was working so well they wouldn’t let me.
Do try to manage the se’s read the old posts there is alot of useful information . I wish you lots of luck I still think if you can fight the se it’s worth it and se do get better xxx
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
sue
Is anyone on e/e and having NO side effects at all? I’ve been on the full 10mg dose for almost a fortnight now and nothing! I’d prepared myself for mouth ulcers, nausea and rashes from the “demon drug” but no sign of anything. I’m kind of worried it’s not working… Any thoughts? X
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?
Evening Lynn & Helen
I was on this combo for over 3 and half years. Started on 10mg but side effects were not good. Just felt terribly tired all the time with itchy skin everywhere. Changed to 5mg after 3 months. All side effects went. Fortunately did not get mouth ulcers. I have not heard about whether dose has anything to do with height and weight.
Good luck with scan Lynn on Tuesday.
Hope that helps.
Linda