Good Morning Ladies!Sorry to But in , but I have has some progression in my liver mets and have been taken off Tamoxifen and just completed 7 cycles of Piclitaxol. I am hoping to have liver re-section. Then onto hormone thereapy again. An oncologist ( not mine) has recomeneded everolimus+exemestane. BUt… I live in Wales. Does anyone know if it has been allowed here yet? Wishing you all a stable new year!xxx
ooops, posted twice.
I’m not absolutely certain about this but I don’t think everolimus has been approved by NICE as a treatment in secondary breast cancer (although it has been approved for neuroendocrine pancreatic tumours which are pretty rare). Most services wouldn’t therefore prescribe it “routinely”. Thus in England my understanding is it is being funded by the cancer drug fund. In Wales this would mean applying for it on an exceptional need basis. Its certainly worth asking your consultant. If I get a chance i’ll ask when I am reviewed re my capecitabine treatment on tues. Pamx
Hi All,
Not much to report but saw the lovely Dr M. today and I am to carry on with the Afinitor/Aromasin combo. He said that my bloods were realy good so no problems there. My next scan is due next month so we will see what happens. 15 months since dx, I still have no symptoms fron my lung mets so I am keeping my fingers crossed that I remain stable. Been on this treatment for 7 months now.
The side effects I have been getting are manageable. My latest one is very soft nails. I have to keep them filed short as they break as soon as they grow. Another problem I have had is that because of the mouth sores I have been using Chlorexidine mouth wash. ( this worked better than the Mu-Gard they gave me at the hospital). However, the mouthwash has really stained my teeth. I saw the dental hygienist today who said that it was the wosrt mouthwash for this problem and to try just salt water to rinse my mouth. I have no sores at the moment. Not sure if this is because I have been putting the tablet in yogurt to take it but will carry on with this while I am having relief.
Anyway best of luck to everyone on this and hope it works well for us all.Will update when I have had next scan.
xx
Hi all
A quick update on my 3 month scan. Not good unfortunately as though the tumours appear to be stable they are still very active with the beginnings of ascites showing. So back onto chemo alas. if we’d started a few months earlier there might have been better results but I’m too close to the wire to take the chance so the idea is to hit it with a chemo sledgehammer. Ho Hum. Anyway wishing everyone else better luck!!
Barbara
Hi Barbara,
Just wondering if you got my PM last night. I couldn’t manage to post the normal way, I dont know why as it has let me now!
Anyway, I wanted to say that I was sorry the treatment hasn’t worked for you. Maybe as you say, it was a little bit late but if you can get some chemo which gets you back to a better place maybe you can try it again.
Hope you find something which has limited SE and works well. There are lots of different things out there and I’m sure one will be the right one for you. Take care. Sheila. x
Thanks for your good wishes Sheila - I’ve just picked up the pm. I’m on to FEC next so am stocking up on hats! I’ve coldcapped through my last two chemos and it’s been fine but I can’t be bothered again as my hair already looks like wire wool! I shall get some cool beanies and take extra trouble with my makeup.
I think it’s quite possible that I’ll try everolimus again as my own feeling was that it was starting to work. My oncologist said that if I’d been fitter he’d have given it another 2 months but wants to get on top of some of the emerging symptoms - ascites etc.
All the best and I hope everolimus works for you guys.
barbara
Thanks Barbara - I’ve taken everolimus for a month and saw my ocologist this week. He was happy with my side effects which luckily haven’t been too extreme. He has therefore given me another months supply and I see him again in early Feb. I am also having zometa and after my next 3 doses will have a scan to see whats been happening with the combined treatments.
I hope your new treatments are positive and not too painful
Karen x
Hi everyone, my onc thinks I may benefit from the combination of everolimus and exemestane. I have scattered bone mets. diagnosed a couple of years ago. Though I’m well, with little pain my tumour markers are going up. We discussed the new regime just before Christmas and I was very excited the more I read about everolimus. However it seemed my PCT- North Yorkshire were not funding it yet, I emailed them and they advised thet they were waiting for NICEs report due out this summer but he could apply for individual patient funding. Then somehow this month things have changed quickly and the funding is available- YAY!
I’m due to start this coming week and I intend to eat and drink LOTS OF FRESH GINGER to try and avoid the mouth ulcers. This worked for me thru 2 lots of chemo 2005 and 2010 so fingers crossed.
Good luck to everyone coping with breast cancer and heres to more new treatments in 2013.
Hi Kristine,
Hope you have great success with the evorilmus and not too many side effects. I thought I had finished with mouth ulcers but have started with a new one this week. Will try your fresh ginger. Thanks for that.
Take care Sheila
Hi Sheila, re the ginger, I find the simplest way is to just grate some fresh root ginger into a cup of boling water, add honey if you like , then when I get to the bottom of the cup I chew the ginger. My dentist told me it works against ulcers because its a natural antiseptic. Good Luck xxx
Hi Kristine,
Thanks for that. I did have some ginger tea this afternoon. I did what you said and grated the ginger and added some honey. It was “alright”. I’m hoping to get a taste for it! It FELT like it was good for you! I am also back on Mu-Gard mouth wash. I started using chlorexidine but my teeth were staining and the dentist said that it was the chlorexidine so I have since stopped that. x
Hi Sheila I am sitting in bed on my laptop, drinking( and chewing) my third ginger tea of the day- and thinking of you. Persevere 
Good morning on a snowy Saturday,
I have been reading the posts and wanted to ask about the mouth ulcers. Are these linked to the everolimus and if so when did they start was it straight away? I have been taking it for 6 weeks now and touch wood I have not had this side effect.
Thanks
karen x
Hi Karen12,
I think I started with the mouth sores after a few days then they seemed to go and are now back. You might not get them. I dont think everyone does and as you havent had any yet you may be okay. I hope so. Sheila x
Hi Kristine,
Well I have had the ginger tea again but I dont know if I could drink it more than once a day unless I get used to it. My daughter bought me some ginger tea bags today though which are okay. They are “Pukka” three ginger and contain organic ginger,galangal, and golden tumeric tea. I will try to have both. Who knows, I might get so I dont drink anything else! Take care. Sheila, x
well done Sheila , I’m sure you’ll have seen the back of those mouth ulcers. I like that pukka tea too and tumeric is supposed to be a great anti cancer ingredient. I try and sneak it into most savoury things I cook along with black pepper. I have a friend who even eats it in porridge which is a step too far for me! Take care. Kris x
Hi Kris,
Just got back from yoga and made a cup of ovaltine.( I know how to live it up!) Re tumeric, I also put it in savory meals. It isnt noticable really is it? I have also ordered some tumeric tablets from healthspan and they should come tomorrow I think. I try my best to have things which I are thought to have anti cancer properties in. My daughter is a bit of a nag with this. She has got me drinking pomegranet juice every day and I try to have rhubarb when I can and I definately eat lots more fruit and veg than I used to. I have managed to get my husband eating more as well. He has had cancer twice. He had his left lung removed 2 years ago and luckily the cancer hadn’t spread. He had a follow up appointment this morning and his other lung is fine so we breath a sigh or relief. He is very well considering and he also had radiotherapy for prostate cancer twelve months ago.That was also a success so all in all we are a right pair!
Hope you are coping with the weather. It’s bad where you are isnt it? I am not far from the Yorkshire border, just the other side of the pennines and we have quite a bit of snow but I think the east is the worst isnt it? Take care Sheila x
Hi Sheila, God you have had more than your fair share btwn the two of you. I do hope things continue to improve. Its funny how life turns out isn’t it, we have been married 33 years and my husband is 11 years older. We always imagined his health would suffer first. I got breast cancer the first time at 47 when our youngest was only 12, then again at 52, secondaries diagnosed 2 years ago. He remains hale and hearty thankfully and is wonderfully kind and patient. I was a nurse before I retired last year and he used to call me the " health police" when I nagged him about diet etc. I havent heard about rhubarb being good, something else to try- still no mouth ulcers though. We live on North York Moors and the snow is deeep. Looks lovely and thankfully I don’t have to dig my car out and fight my way through to work anymore. I snuggle futher under the duvet and listen to everyone else in the mornings. Take care, keep warm xxx
Hi Kristine,
Just wondering how you are with the evorilmus now that you have had a few. I was tired at first and still get tired days but most of the time I am okay. I’m sure you will be fine especially as you eat well. I think the Aromasin are the worst for me as I get some joint pain in my wrists and knees. Ah well, so long as it works and should find out on the 5th Feb.
Take care. Sheila x P.S. just having a cup of Pukka ginger tea.