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.
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.
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
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.
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.
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
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.
Mags did send you a pm but not sure if you got it-had problems with listing your user name on the message.
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
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.
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.
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
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
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.
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
Thats great news Liz! Hope it continues for a long time. Glad you are finally feeling better.
Love Sheila x
Hi Liz, I'm not on the EE combo but saw your name here.
Great news your scan results show stable!
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.
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.
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.
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.