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

Porkie
Member

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

I am now on my 3rd week of EE. Like many others do get extremely tired and am now starting to get mouth ulcers which I was really hoping I would not get. But keeping fingers crossed that the drug will work. Keep rinsing with hot salty water which is keepng them at bay at the moment. Hope everybody else is managing to cope with the SE's.

Nythejan
Member

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

Just coming to the end of my 2nd week on EE.  Had s a small mouth ulcer for as couple of days and apart from tiredness no other SEs and my dry cough seems to have reduced as well. 

Had copy of my consultant' s letter to my GP and when you see your promblems written down in black and white  whicht states scans show "evidence of progressive disease" you realise how bad/ill you are.  Really hoping EE works; trying to keep cheerful and planning loads of treats.

Esha_Ness
Member

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

Hi Mrs J
I think it may be worth talking to your Oncologist a little more and ask why he/ she is considering EE v Capecitabine.. They often consider EE when many hormone treatments have failed . It's an expensive drug and they would have to apply to the Cancer Drug fund for funding. or are you a private patient? It's worth looking up these drugs on the website so you are aware of different side effects with each drug . E E also used as alternative try if chemo has stopped being effective. Any way best of luck with the appointment .
I am at the end of week 3 of EE and having a tough time at moment. Tiredness. Persistent irratating cough., breathless on exertion. Taste changes and loss of appetite. All these are named side effects so nurse has advised me to stop drugs over weekend. Yippee ! Certainly hope this is still early days stuff ! At least no mouth ulcers. Am enjoying chilled ginger beer!

valkeh
Member

Re: anyone on everolimus/exestamene

Hello E/E girls.

Worst SE for me so far is the mouth ulcers. It's such an upleasant and painful S/E. I also have problems with my nails- very thin and brake very so often. Another S/E is some spots I get on my scalp. Quite irritable and painful ones. I am not tird and I am still very active. I have lost some weight too but only because I try to keep a healthy diet and I can do with losing another 4kgs to be honest. I am still on 10mg as my SEs are managable..

 

Anyway. I am on my 6th cycle now. Scans at the end of October. I realy really hope this treatment to help me for a bit longer than previous ones. 

 

Hope you are all well and you enjoy the Sunday

God bless

Valia

x

roxy12
Member

Re: anyone on everolimus/exestamene

Hi Esha,

 

I used to have very tired days when I just had to go to bed for a few hours. I still have days were I am tired even if I have had a good nights sleep. It is a "different" tiredness.  You just cant function properly; but the day after so long as I rest when I am tired I am usually okay. I think you will feel better as time on the E/E goes on. 

 

Sheila

Mrsj
Member

Re: anyone on everolimus/exestamene

Been asked if I want to go onto EE treatments not sure what to do, can go onto chemo tablets also capecitabine as well got cancer spots in my liver been on 2 other chemo course not been any good. Have too tell hospital next week what i want to do ?
Esha_Ness
Member

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

I meant afternoon kips!

Esha_Ness
Member

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

Hi EE girls
I am into my third week of EE and the past few days have been feeling ridiculously tired. Afternoon lips are lasting 3 or 4 hours! Has anybody else felt tired on this combo?
Other question is are most people on 5 mg or 10 mg of the Everolomus. Or do they just reduce when having severe side effects?

roxy12
Member

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

Thanks Esha, Yes I am relieved that it is working. I have a scan in two weeks so I am feeling a bit worried now but fingers crossed.

Porkie, Ihave lost weight too like Mags. About 8 kg altogether. I lost it about Christmas last year when my mouth was really sore and I was off chocolate then too.I wasn't well over Christmas and couldn't eat Christmas dinner. (My favorite meal!) Some thing still dont taste right but I keep trying to put a bit of weight back on as my appetite isn't what it was. I think it is common to lose weight  on this combo.

 

Sheila

Brighton-Belle
Member

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

Hi, I have lost weight. Have been on e/e since jan and hadn't been weighed since April and I have lost 5kg. I have lost my appetite a bit and certain foods I have gone off. So you may find as it is in your body after a few months you may lose your appetite a bit like me. It is the only good thing re the side effects. Mags
Porkie
Member

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

Hi I have been taking this combination for just over a week now - extremely tired and a couple of spots appeared as well as sore mouth but otherwise doable. I just wondered whether anybody else had noticed that they put on weight? I know its early days but I have definetely put on 3/4 pounds and haven't changed diet / excercise. Just hoping wont continue or will be needing to buy whole new wardrobe! Thanks Jackie

Esha_Ness
Member

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

Thanks for that encouraging news Roxy and you must be so releived that its working well for you.
I am just recovering from yet another migraine. All this lying aroind and doing nothing is not in my nature.

roxy12
Member

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

Hi All,

 

just got back from seeing the onc. I asked  him how long he had had other people on the E/E combo and he said that I was the longest. No one had managed to   tolerate them longer than 7 months for various reasons. I have been taking them for 14 months now. He always smiles and says that I am doing really well. I then asked if he knew how long it could work for. He said that in a trial the longest time before it stopped working was 2 years.

Hopefully,it will be better than  that but we shall see and hopefully there will be something else which will work as well if this does stop working.

He also said that usually the side effects were worse the first few months and mine certainly were, so anybody suffering, hopefully things will get better for you also.

 

Sheila

Esha_Ness
Member

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

Just been catching up on your posts . Valia I really hope that this EE combo works for you after your 6 treatments.
I am now into my third week of EE and apart from the migraines at the beginning I am not aware of any other side effects. Perhaps a little more tired than usual . Have just had appointment through for 6 week scan after starting EE. If its not working its back on chemo so fingers crossed its good news.
Hope all other EE woman are managing these drugs.

Brighton-Belle
Member

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

Whoops. Sorry lyn see I have repeated myself on previous message. My memory is so bad. How is cap... Can't remember how to spell it. Is it chemo? How long are you on it for and how r side effects. How long we're u on e/e mags x
Brighton-Belle
Member

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

In I didn't get message or did u send it on Facebook. I have trouble login in every time since they changed forum, it's a real pain as I have to reset my password every time. Been looking for flats with seaview so came to shore ham the other day. Do u want me to bring your broach. How r u doing. My back is worse so am having a week of R.T week on Monday. Can't believe it. Still in e/e until checked liver on c.t. See cont. end oct. mags
lucinda
Member

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

Mags did send you a pm but not sure if you got it-had problems with listing your user name on the message.

 

Lynn xx

valkeh
Member

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

Hello E/E girls

 

I am back from a long and lovely holiday.

Having scans in October ( after 6 cycles of E/E) and the anxiety has already started...

Hope you keep well

Valia

x

Brighton-Belle
Member

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

Thanks Lynn. Do you want me to drop your broach round.
lucinda
Member

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

Mags I had real problems with the hospital reading my scans while I was on e/e. I was called up to hospital at short notice to a meeting with radiology consultant and the senior oncologist so they could explain the results they had been getting. They could not agree whether I had progression in the liver or whether the ct scans were showing dead tissue. Following a liver mri they decided the lesions had increased in size so e/e not working and put on capecitabine. They think e/e worked for 3months (when I was on the 10mg dose) but stopped working after that when they reduced the dosew to 5mg. They insist decreasing the dose did not make any difference , and like you I had this down as the wonder drug that was going to it's job.

Good luck with the rads, I recently had a course of 5 blasts to my left pelvis/hip area and the results have been really good . I hope the scan shows liver spot is reducing. keeeping my fingers crossed for you.

 

Lynnxx

Brighton-Belle
Member

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

Been on e/e since jan 13 MRI scan sows my vertebra has some activity. So am having a week of radio therapy and if c.t. Scan shows liver has got 'worse will have to come of drug and go on chemo. My c.t. Scan in April showed my liver spot had shrunk a bit so hopefully it will be the same. Very disappointing I was hoping this was my wonder drug. Dr did say as I hadn't had a MRI scan for 14 months it may have got worse before I went on e/e but I am confused as I have had c.t. Scans and they say my back was stable. So confused. Will keep you posted.

Meantime what is the longest time anyone has been on e/e. many thanks xxx
Esha_Ness
Member

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

Hello to all 2 EE woman

Its comforting to know that there are others out there too on this drug combo!! and I am always pleased to see another EE post pop up!

For those of you who are reading this for the first time . I have gone onto the EE as part of a reseach study funded by the drug company. The research base is Cardiff and although I live in Bristol I will be treated in Wales for as long as the drug works. It would not have been available to me on NHS as I have already been on Exemastine and application has to be made through the Cancer Drug Fund.

 

I was diagnosed with secondary bone mets in 2010, 10 years after my primary diagnosis . At the time I was given a good prognosis with apparently no lymph node spread. The progression was from a 6mm lobular tumour only found retrospectively. This cancer is so devious, sneaky and unforgiving. Understandably I could not and still dont believe thay the cancer could come back 10 years later.

 

 On the bones front the amazing thing is that my bones are now just about stable but the rubbish news is that I have disease progression in my lung that decided to continue to grow in spite of being on chemo.

Having now had 3 chemos we are giving this drug a try in the hope that it will kick start the hormone treatment into action. I will have an off trial scan after 6 weeks and if the cancer has gone crazy then I will go onto another chemo .

I have got frozen pineapple pieces in the freezer and will see the GP and ask for Gel clair in anticipation of the mouth ulcers. When did the mouth ulcers first show up?

I was off to a horrendous start on this EE with a  terrible migraine for 2 days and came off the EE for 2 days ala protocol. Am pleased to say i am now back on the EE and feeling OK. I think the migraine was an explosion of all the stress I have had with going for  base line tests for the study.This included CT scan, bone scan, lung function test, blood tests. ECG , and xrays ,all on different days in Cardiff and Bristol in one week.

 

Any way good news is that I am on the drugs  and wouldnt it be wonderful if it kept things stable for a while. I really look forward to having hair that is longer than half an inch as at least I keep my hair on this drug.

 

For those of you new to secondary mets, I am lucky at the moment in that I dont have  any symptoms and continue to cycle , swim , etc and look and feel well. I keep on being told there are still lots of treatments out there and when one stops working they try another.

I am going to the Secondary Breast Cancer support group in Bristol on Wednesday so may see some of you there.

With warmest wishes to you all as we go through all of this.

 

Brighton-Belle
Member

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

Thanks for suggestions. Sounds like gel lair I get from the g.p. that you dissolve in water. I keep it in mind for next time. Does the salt water taste ok it sounds horrible but if it does the trick I will try it. Many thanks. Mas x
Angelfalls
Member

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

Glad to hear you got on to the trial, Esha. Good luck!

Esha_Ness
Member

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

Hi to all on EE
I am joining you having started on E E yesterday. It's been very helpful to read your posts in advance of starting. . I have had a stressful week having base line tests and scans in order to be taken onto the study in Cardiff.
Not a good start as I have had a horrendous migraine today, feel wiped out but no mouth ulcers yet!
I thought I would go to GP and get what you suggest in advance.
How tired do you feel on this. Is it as bad as chemo? Does it come and go?
They are rescanning in 4 weeks time to check that my lung mets haven't gone crazy. Good news is that my bones are basically stable at the moment .
I am so hoping like us all that the EE does what it's set out to do. Lovely not to be going straight back on chemo as my hair is just growing back. Do keep in touch and I will let you know how I get on.

roxy12
Member

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

hi Brighton Belle,

 

Sorry you are still having trouble with mouth ulcers.I do too from time to time. Sometimes like you I use Difflam but they gave me a steroid mouthwash at the hospital called Betamethasone  500 micrograms. I use this if they are really bad. You use them twice a day desolved in about 10 mls water. They are pretty good. At the moment no sore mouth but use a salt and water rinse at night last thing before bed.

Take care. Sheila x

 

Brighton-Belle
Member

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

hi, corydsol stains your teeth but diflam doesnt.  it is as good and is a green liquid as apposed to the pink. you can get it on perscription.   also gelcare mouth wash sachets help again on perscription.. i have just had 3 really bad weeks of ulucers so am going to try the toothpaste now and see if that helps keep them away.  hope this info helps. mags 

Brighton-Belle
Member

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

hi,  just had 3 really bad weeks with mouth ulcers.  They were much worse than usual and lasted much longer although they have gone now.  Someone suggested sulphate free toothpaste.  Does anyone know anything about them. Are they any good how much are they and where to get it from.  Your help will be greatly appreciated.

Porkie
Member

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

Hi Lisa

Sorry I have only just read your post regarding the Bristol meeting but I see that another lady has kindly given you the details for next Wednesdays meeting. I do hope you can make it, would be lovely to meet with you. Jackie

roxy12
Member

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

Thats great news Liz!  Hope it continues for a long time.  Glad you are finally feeling better.

 

Love Sheila x

Angelfalls
Member

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

Fantastic news, Liz! Thanks for sharing!

belinda
Member

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

Hi Liz, I'm not on the EE combo but saw your name here.

Great news your scan results show stable! Smiley Very Happy

lizcat
Member

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

Hi all,

 

Sorry not been on for a while but nothing to say really - am finally feeling better after my appendix op months ago. It really knocked my whole system.

 

Just to let you know that I was in clinic today for monthly check up and 6 month bone scan results and things appear stable!! I've been on EE for 6 months now and hopefully it will continue to work for a lot longer...Saw the registrar I've seen before and who is quite knowledgeable about EE as she's contributed to a paper or something and she's happy with how things are going so that's good enough for me.

 

I hope you all continue to manage the drugs ok and they do their job and I'll catch up again soon.

 

Liz x

roxy12
Member

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

Hi Esha,

 

I started on E/E just over twelve months ago and at the first 12 week scan I had "marginal" regression. I haven't had any more regression but have remained stable so that is good. My next scan is at the beginning of October.

 

To everyone else, hope you are all doing okay. I am now using Roxy as my user name as I couldn't sign in with my usual Zola for some reason.

 

Sheila x

Esha_Ness
Member

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

Thanks Angelfalls.Will PM you when I have worked out how to do it!

Esha_Ness
Member

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

Hi Lisa

Sorry to hear about your recent secondary breast cancer diagnosis but pleased to hear you are doing well on EE.

This is what I need to hear as I am hoping to start on EE next week.

When I was diagnosed with secondaries in Jan 2010 I found it  hard to take it all in or to beleive it ( and still can't get my head around it even now ,three and a half years later.)

 

I have just started going to the Bristol Secondary Breast Cancer group  and found it very helpful and supportive. I met a fine group of women there.

The next meeting in Bristol is Wednesday 11th September at the Holiday Inn in the centre of town 11.00am to 3.00pm.There is parking there that is paid for.

Sea_View
Member

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

Hi Jackie could I have details of meeting in Bristol as diagnosed in march with secondary breast cancer in bones and liver!! Been on. E/e for 5 months and so far having good results. Am looking at perhaps setting up group for secondaries in wiltshire! Would you be interested?
Thanks lisa
Angelfalls
Member

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

Hello Esha,

Read my post of 13th August below to answer some of your questions. I'm on the trial at Velindre. Feel free to PM me if I can help with anything!

Esha_Ness
Member

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

Hello to all on everolimus/exemastine

Welcome to this new style BCC forum. All looking good once I get used to working my way around it.

 

I am hoping to go onto the EE study in Cardiff following  CT ,bone scan and lung function test next week.

I just want to touch base with you all and say hello. Have read alot of your posts re possible side effects which is helpful.

 

I was on Exemastine for 5 months and then it stopped working. Have been on tamoxofin since but Consultant felt that hormone treatments were no longer working. Has anyone else been in this position and then had a response to EE? Second question is does response usually show at 12 wee scan ?

I will keep you updated on how I get on and I hope that this drug is working well for you.

Angelfalls
Member

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

Thanks, Liz and Sheila! 😄

lizcat
Member

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

Angelfalls - fab news. May it long continue like that.

Liz

zola
Member

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

Angelfalls, Thats GREAT news!!! I'm really pleased. Long may it continue and hopefully get you more regression. I too wish NICE would look at some of these threads.
Sheila xx

Porkie
Member

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

Hi HelHel - I have just read your post as I have been discussing possible going on this combination with my oncologist today because of progression and just wanted to say that whilst there is not to my knowledge a group for secondaries in Wiltshire there is a monthly meeting in Bristol, which I go to. Please let me know if you would like further details.
I hope everybody on the combination is coping with the side effects and that the treatment is working for you. Jackie

Angelfalls
Member

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

Thanks, Valia and Sheila.

Good news! Some of my tumours have shrunk and the rest are stable!! No progression and no new nasties - YAY!!! 😄 So I get to stay on the trial for another 3 months (until the next scan), and only have to go back to the cancer centre for my monthly Denosumab in the meantime.

Exemestane alone stopped working for me at some point between my 3 and 6 month scans, but subsequently adding in Everolimus kick-started it again. My onc is very pleased, as a number of others told her she was wasting her time putting me on Everolimus when Exemestane had already failed. So glad she didn't listen to them and stood her ground! Just wish someone at NICE would read this thread...

Hope everyone is having a good day today.

lizcat
Member

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

Hi Sheila,
I was on antibiotics (amoxicillin) and was fine. Perhaps it was the type of an. I can't take erythromycin as it makes me violently sick.

Saw onc a fortnight ago for normal check up and she showed me an article in a cancer journal saying that everolimus had increased the efficacy of exemestane and seemed to make it work for an extra 5 months on average. Am having a bone scan this week with results when I am back in clinic in 2 weeks. As I have bone Mets, she wants a bone rather than ct this time and perhaps alternate between the two. Worst bit of scan is hunt the vein - they seem to be getting worse.

I've nothing really to report - a bit more energy but not much. Lazing around but I can't be bothered doing anything else or raise the enthusiasm. Minor grumble really.

Hope you are all managing as well as possible. I am reading if not posting often.

Liz

zola
Member

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

Hi girls, Hope you are all doing okay. Good luck with your results today Angelfalls. I am crossing my fingers for you.
Hope you are okay too Valia.
I was wondering if anyone has been on antibiotics whilst taking this combo? I was prescribed Flucloxicillin for an infected toe but they made me very nauseous. They changed them to erythromicin but these were just as bad. I have never had a bad reaction to antibiotics before so I think it must have because of the medication.
I am not taking antibiotics now and feel fine again. Still getting mouth ulcers but not too bad. Finger nails are terrible though. I tried leaving them to grow but I kept catching them and making them painful so I have gone back to having false nails done. A bit of vanity there too I'm afraid!
Good luck to everyone else. Sheila x

valkeh
Member

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

Hi girls,
Just a quick update. RFA is done.Hope it works for a while.
Angelfalls- good luck with your scan results!
HelHel I hope your doctors will decide to remove the chest drain soon!

All the best for now
Valia
x
HelHel
Member

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

Thanks girls for replying. All still going well. Appetite a bit suppressed. Maybe meds,maybe not.
Seen chest physician this week, no fluid on lung. Begs the question why my chest drain can't be removed. It's a PleurX type. The answer at the mo is to leave it but its not serving any purpose and its uncomfortable.
Anyone out there with experience of this sort of drain??
good luck to you all undergoing tests and waiting results.
H
xx

Angelfalls
Member

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

Had my first scan yesterday since starting the E/E combo and will get my results next Tuesday... Fingers crossed this is the one to finally get me stable!

Hope everyone's doing as well as can be expected. xx

valkeh
Member

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

Good luck with this treatment HelHel. It's my 4th cycle and I still get some ulcers. Oncologist gave me a mouthgel gelclair- and it seems to reduce the severity/number of them. Or at least that is the case for the last cycle.
Nicky, I have my treatment in London- Oncologist at Royal Marsden referred me to Radiologist in St Thoma's. I wasn't very happy that I had to repeat the treatment 6months later but I am not entirely sure if it is a new lesion or the one that ablated it before. I will know after my consultation with Radiologist in a week's time.
Keeping well ladies. Hope treatment makes wonders for all of you outhere.
Valia
x