Breast Cancer Now Forum

I will miss Val on this forum. Throughout my time of tapping into bone mets thread I was always inspired and helped by Val's posts. More so it was her approach to how she lived her life around her cancer and the love that came through her words . Thankyou Val Esha Ness ... View more

To add toy last post ,I have lung mets so it was difficult at first to work out whether my symptoms were the side effects of the EE or to do with lung mets. Good news is that symptoms have settled down and I am feeling a lot better. ... View more

Hi angelfalls I was on the EE combo up until a month ago. I was admitted to hospital with an infection ,breathlessness , cough and partial lung collapse. I had over litre of fluid drained from my lung . I hadn't thought that it may have been all due to the Everolomus although they had been reducing dose. So I am off the EE combo and started Eribulin today. ... View more

Hi Robin Good to hear such good news from this EE combo. Alas I in hospital with chest infection. The don't know of its causes by the meds or the lung mets. Anyway have been advised to come off EE and when back on it go on half dose. Anybody had good outcome with 5 mg of Evorilumus.? ... View more

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! ... View more

I meant afternoon kips! ... View more

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? ... View more

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. ... View more

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. ... View more

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.   ... View more

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. ... View more

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

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. ... View more

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. ... View more

oops seem to have pressed the wrong something and lost a long reply ! So...................... welcome all to the new look forum. Watch this space. ... View more