Hi Valia,
Hope your results are good! Be sure to let us know. Hope everyone else is doing ok. Had my results yesterday and after a year on the combo it is still working!!! Next scan October.
There was a lady at the clinic yesterday who was in her eighties and her daughter said that she had been going there for years. She had breast cancer in her breast, liver, kidney, lymph nodes and bones but was doing well on chemo and herceptin! She looked great and was in good spirits. Definately an inspiration!!
Take care everyone. Sheila. x
Sheila so pleased you have had good results, Valia good luck with your scan. I should have gone to clinic yesterday but hospital changed my appointment to today to talk to radiology consultant, they have been having problems reading my ct scans so had to have mri . Got all my scan results today and it would appear that what they had previously thought was healing is in fact progression in the liver and also new hot spots in the pelvis so sadly combo not working, and probably has not been for the last 3 months. Just a bit sad that the time has been wasted, not to mention the cost. So am now having a break from treatment for 3 weeks so I can have rads to my hip and the starting capecitene(can’t spell !! ).
Oh well onwards and upwards and hope for better results this time. Good luck to the rest of you on combo and long may it keep working for you.
Lynnxx
Sheila-glad to hear your news. Great!
Lynn, I remember after I had a PET scan last year they detected a possible fracture in my L- hip , directly asked for MRI as it is more sensitive for the bone lessions. Good luck with your scan. I had a fracture and I had pins to stabilise the join.
I had my results today. As per PET report there is an excellent report to all the bone lessions! So very pleased. Liver doesn’t behave excatly the same- a new spot but possibly it’s the one I had RFA done before back in January. Bone markers all coming down nicely. Oncologist was very pleased and of course I was the same!!! Will see Interventional Radiologist again to discuss about potential RFA number 2 but at least there is a good response within the bones.
I spoke to Oncologist about NICE etc and he said he had already written letters to NICe as he thinks combo is one of the biggest discoveries for the hormonal breast cancer.
Hope you are all doing well on the combo.
Valia
x
Hi ladies, sorry to be dropping in on your thread but have just read some updates.
Sorry to hear that this combo isn’t working for you Lucinda but that Capcitabine does. I’ve been on this for a few months now and fingers crossed it is still working for me even though I should have moved onto a different chemo - but that’s another story!
Valia - glad to hear the bones are improving and hope that they can sort out the liver spot. Have you had RFA done in Hants? I had asked for it originally but was told I should have it when spots are smaller, may be looking at asking again.
Hope everyone else on here is doing well and the SE’s are minimal.
Nicky x
Lynne, sorry to hear the treatment hasn’t worked for you. I hope the next one works wonders. Good luck.
Good news Valia. Hope the liver spot is just a blip and that it was already there. That would mean that you were at least stable with some regression wouldn’t it.
I didn’t mention NICE as it was a young registra that I saw but I will mention it next time I go.
Sheila xx
Hi ladies
i have been reading some of these posts with great interest. I am now into my 2nd month of evero/exemes and for the first time in over 6 months my CA count has come down. It’s still extremely high at 999 but was previously 1136 so I’m grabbing at this and taking it as my positive path. The one I’ve been looking for, for months after 5 cycles of epirubicin failed to make any difference.
I had ulcers on my lips during the first month. Very attractive not! Now in 2nd month just one lip ulcer now fading but my mouth is so sensitive. DP made fajitas for dinner last night and there was no heat in them yet mine tasted like it was laced with a thousand chilli peppers!
i have been using diluted Difflam which makes my mouth numb for a time and was using Igloo but this wasn’t what I thought it would be. Its gritty and yellow and looked even more hideous on my lips than the ulcers themselves. I did try Blistex which helped a little.
I don’t seem to have any other SE’s which is good.
Good luck to all of us out there on this relatively new combo and let’s hope NICE approve it soon.
BTW, anyone in Wiltshire? Is there a group of secondaries in the area?
xxx
Hi HelHel,
Welcome to this thread. I hope you have good success with this combo. I have been on it for twelve months now and it is still working for me. I still get mouth ulcers though not all the time. I can go weeks in between and think that I wont get anymore then one pops up. I have one under my tongue at the moment but it’s not too bad. I have tried various treatments and to be honest I think salt and water are as good as anything but I use Difflam sometimes and at the moment I am using a steroid mouthwash called betamethasone which I got from the hospital. I think this is good if the ulcers are very inflamed.
Hope yours dont get too bad. I have found certain foods make them hurt more such as tomatoes (although these alright if cooked) My taste buds have changed but I can eat most things and my appetite is good.
Good luck, Sheila x
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
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
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
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
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
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
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.
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, 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
Angelfalls - fab news. May it long continue like that.
Liz
Thanks, Liz and Sheila!
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
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.