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.
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.
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.
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.
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?
I meant afternoon kips!
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 ?
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!
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.?
Hi everyone , have been reading your threads for weeks now and would like to join
you. Diagnosed breast cancer in March 2011 and had a mastectomy with rads, no chemo.
went on anastrazole thought everything was fine until Nov 2012 when bad back and rib pains
started. After all the scans and waiting for results which seem to take forever was diagnosed
multiple bone mets. spine,ribs, pelvis, so put me on tamoxifin. 5 months later after scans one
new bone met and 2 have grown so that didn’t work either. now on e/e combo for 5 weeks and
Zometa. Really hope this is third time lucky and am encouraged by the results a lot of you ladies
are getting, although sadly not everyone. S/E mixed bag, I’m touching wood here but no mouth
ulcers yet. I always take my everolimus when i"ve coated my mouth with Manuka honey,have to
brush quickly afterwards as terrible for teeth. Lost my taste on nearly everything, love my food
but going of it a bit as everything is the same. Tiredness comes over me in waves as though
some has given me a sleeping draft, try and rest as much as possible and also try to take a little
stroll to boost me. Can’t shop for hours like I used to, much to my hubs delight.
Flakey skin all over the palm of my hands and splitting behind nails. The strangest s/e i’ve had
is my remaining nipple and surrounding area, can’t remember what it’s called, has turned dark
mauve and itches. Onc and consultant have seen it and no one seems worried just keep an eye
on it, has anyone else experienced this?.
Sorry to have prattled on but is nice to know there is a sight like this where we are all in the same boat,
as even your best friends never really know what your going through.
Have a good week all.
Hi,
Been on this mix for 4 weeks now and am suffering from an extremely dry mouth. I have been prescribed a moisturising mouth wash called Biotene, which is OK but recommends 5 applications per day. Has anyone else got any tips, apart from drinking water?
Thanks & best wishes
Jan
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.
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.
Hi, thanks for your comments if nails r fungal treatmemt can cause liver damage as i hav c in my liver dr said they wouldnt treat mine. Il try a lighter polish. Many thanks mags
How’s everyone doing? This thread has gone very quiet, but I hope that’s a good sign…!
I restarted treatment a week ago after a two week break while some lung issues resolved. I’m now taking just half the dose (5mg), but I seem to be having the same flu-like SEs I had when I first started - chills and fever a couple of hours after taking the tablets… Hope that means it’s doing its stuff!!
So I was wondering how many others have dropped down to half the dose and how you’re finding it? Would love to hear from you!
My nails are awful, too! So thin and soft and splitting vertically down the nail, then catching in everything… Ouch! Nail strengthener hasn’t helped at all and I’m too scared to have gels done in case the whole nail comes off…
Keep on keeping on! xx
Valia and Mags, I’m so sorry to hear that you both have progression and have to change treatments. It’s always a worrying time. Fingers and everything crossed that your next treatment will be really effective for a good long time and with minimal SEs. Look after yourselves.
Hope everyone else is doing ok. xx
Well I have only been taking this combo for almost a week now and I have a sore tongue already, makes it difficult eating, any tips? Been applying the bonjela, dont half sting.
Thanks.
Jan
Hi Lizcat
Sorry you have had problems posting, we can look into this for you , just drop us an email to moderator@breastcancercare with as many details as you can and we will try to help
Best wishes
Lucy BCC
Well bone scan showed bit of spread in spine but ct showed things to be same as June’s scan so mixed bag really. Onc not unduly concerned so getting an mri scan to see how mets are affecting spine and tissues. Then perhaps it may be vertebraplasty, rads and/or change of drugs. Staying on EE til results in. Was hoping to have plan in place for new year but that won’t happen now. Hey-ho.
Have as restful and comfortable festive season as possible and here’s to a better 2014 all round xx
Hello, everyone. I haven’t posted for a while as things have been up in the air, but I had the results of my latest CT scan today and it’s showing a bit more growth everywhere, plus I’ve still got problems with my left lung (pneumonitis following a partial collapse), probably caused by a combination of the Everolimus and the cancer itself irritating the pleura (although no cancer is showing in the lungs themselves). So I’m now officially off the E/E combo. To be honest, I’ve been off it more than I’ve been on it over the last couple of months, so it’s really no surprise.
I now have a course of antibiotics and steroids to try and sort my breathing out and this evening, I’ll be starting Letrozole, the last of the AIs for me to try. My onc is hoping to get my lungs to improve before the inevitable chemo options ahead, as she said I’d be at too high a risk for nasty lung infections to have chemo at the moment. She didn’t want to wait for the possible approval / refusal of funding for Faslodex, either, as she wanted to get me started on another treatment straight away. Although I’m still hopeful that I’ll be well enough for us to take the time to apply for this at some point in the future…
In the meantime, another lump has come up in my collar bone and I’ve been having a lot of pain in my left hip, so I’m going to have a blast of rads to knock that on the head. Previously undiagnosed mets in my spine are now showing up as they are healing, which is good news! But this wasn’t really how I wanted to start the new year… Still, onwards and upwards and fingers crossed for the next treatment!
Best of luck to all of you still on E/E - I hope it’ll work well for you with minimal SEs, but make sure you look after yourselves and your lungs!