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

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

hi
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.

596 REPLIES 596
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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. 

 

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Bumping up

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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!

 

mo

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Hi,

how are you doing? Are you still on this combo? 

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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.

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Hi,

 

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.)

 

TO EAT:

 

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.

 

Pippa

 

 

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Well day 7 on the devil pills! I was getting headache and sicky about 4 hours after taking them so the last day or so ..take exmestance in the morning and everminus later in the day ..this seems to help by separating them.
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Hiya lyndyloo

Well took both today mid morning as soon as I ate something. ..fingers crossed no side effects.

If these don't work out. .it will be cape pills so.might have to join the Cape crusaders thread !

Hugs xx
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Hi Carolyn

I know like you I read all the side effects. Not everyone gets them. When you were on Letrozole side effects can be quite bad.

If we got all the side effects it would be terrible. Fortunately I have been quite lucky when I think about it.

As I said previously I took tablets after evening. meal. Did the same when I was on Letrozole. I.take blood pressure tablets which I take on a morning. Don't like to take all the tablets together.

Good luck.

Linda

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Just sat here now looking at these new pills ..aah why did I read the side effects leaflet ..scared myself now ...but going to eat something and go for it ..the quicker the pills start working on the little blighters that have gatecrashed my body ..the better.

☺☺☺☺☺☺
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Hi Carolyn, hope all goes well with your EE combo. It did not work for me but a lady at my support group has been on it for over two years and is stable. She has the 5mg dose and was never given the higher one, she tells me that her SEs are very manageable.

I would reiterate everything you have been told about mouth ulcers, mine were horrible. Try aloe Vera toothpaste, very soft toothbrushes, mouthwash and salt rinses. Hope you do well on it, we are so individual.

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Hi Carolyn

Well the day has come to start Everolimus.

Unfortunately I am not much help wirh any side effects I was lucky once the dose was reduced I was fine.

I did work 31 hours whilst on that treatment and went on holidays. I have got my fingers crossed for you that you will be the same.

Good luck.

Linda

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Thought I would activate this thread again now that I'm starting this regime so hopefully we can all have a moan together with side effects ....
Xxxx
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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.

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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

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Hello Helenlorraine
I too was put onto 5mg of everolimus and my onc doesn’t think that it is working, my TMs have risen since I started it 3 months ago.
I am having a ct on Tuesday and then we will discuss maybe changing treatments when the results are through, until then he wants me to continue using it.
He has not mentioned increasing the dose and I never thought to ask about it. I am about the same size and weight as you.

However since I started on it I have had constant mouth ulcers and other SEs which are pulling me down a bit. One part of me wants to stop so they’ll go away, but I don’t know whether another treatment will cause them as well.
I know in some cases that body weight is taken into account but it may not be the case for all medications.

Sorry not really been much help ,

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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?

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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)

thanks

Smartie X 

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My mom has been on this combo for two and a half months, plus the first month t 5mg, and the only side effects she has had is her food tastes bland/no appetite and inflamed hair follicles
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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
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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

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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
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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
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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

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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

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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

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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

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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

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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!!!!!

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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

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Hi Julia

I have taken Cape and am on the e/e combo. The Cape was , for me, the more doable of the two. The e/e combo has definitely been more of a challenge. The thing is people react differently to each treatment so hopefully it will work well for you
Good luck
Jo x
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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   

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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 

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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.
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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.

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Hi Julia/cress
I haven't any experience of e/e but I was on Capecitabine for nearly 18 months from early 2013. One question you may want to consider is has your receptor status changed? It can do with previous HER2- BC, which I'm assuming you are. I had been HER2- for nearly 10 years and already had bone mets when liver mets were also found (in 2013). I had been on anastrozole and it had stopped working. I insisted on a liver biopsy and my receptor status is now HER2+, and still ER and PR +. If I'd stayed on hormone only treatment it wouldn't have worked for me so that is something that's worth considering having checked. If you do start Capecitabine, as I did, you can still have the biopsy done, if it's possible depending on the position of your liver mets, even whilst on treatment. I found Capecitabine very doable after an initial shock to the body and tolerated it well with just the minimum of side effects such as the hands and feet syndrome. No nausea, no low blood counts, no mouth ulcers etc however I know other ladies can and have suffered more.hope this helps
Nicky x

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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    

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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

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Ah Jo, sorry you're not in a good place at the moment, understandable. I'm not on this combo but have used Difflam mouth wash, it numbs, I found it helpful. Good luck, hope you have a good appointment Tuesday. X
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Hi
Thank you for your replies. Have stopped taking them at the moment seeing onc on Tuesday. Became quite dehydrated and felt really ill. I think I would have been ok if I had managed it better. I have a really sore mouth though. Am using gelclair and ambesol but it's still really sore. I have a rash and nausea as well. Feeling right sorry for myself at the mo. Sick of it all !
Love Jo x
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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

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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

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Hi all

I have just started this combo last Saturday and already Im feeling the side effects. It seems from reading your posts that the mouth ulcers are the main issue. My mouth is sore and I'm desperately trying to keep ulcers at bay! My main problem is diahorrea! (Spelt incorrectly I know,) it's quite bad at the moment and I'm wondering if it is the tablets? No one else seems to have from reading the recent posts. Don't know wether to ring hospital or not ! Any one else with upset stomach ? Jo xx
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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

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Hi marirose only just seen your reply thank you, I haven't suffered with the sore mouth apart from what feels like my toungue to big and sore but this goes off and on. I started this in sept and it worked well until I had to have break February/March but been back on now since April on full dose find out Monday if it's still working as TM shot right up!!! Thanks again take care xxx
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 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

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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

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Hi all anyone still on e/e at mo, I've been back on it for 8 weeks now and experiencing some pain in left side and itching all over! Plus a bit of chest pain that comes and goes any ideas? Xxx
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Bumping up for Edwina .xx
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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