Hi
I’ve just started a course of everolimus+exemestane and thought I’d post in case anyone is interested in this new treatment which has just been licenced by NICE.
The exciting thing about it is that it considerably increases the effectiveness of hormonal treatment and, even more positive, appears to give a second lease of life to hormonal treatments which have ceased to work. I have had a good response in the past to hormonal treatments - about 3 years on letrozole and 6 months on exemestane but not much response to chemo - paclitaxol, docetaxol, capecitabine.
There are a few potential side effects with everolimus, but not as bad as chemo.
Anyway fingers crossed and I’ll let you know how it progresses
Barbara
Good luck with the new combination, Coldcapper. I hope you get all of the benefits with none of the SEs.
I’ve had a look at the NICE website and Everolimus (Afinitor), is still under review; even though it’s licenced, it hasn’t been approved yet and NICE aren’t due to make their decision until July 2013 (!!!). So you’re “lucky” that your onc has decided to prescribe it for you, but this won’t necessarily be the case for everyone - I asked my onc about it 2 weeks ago and she said she’d have to apply for “exceptional circumstances” funding, which could take up to 3 months, and I wouldn’t be able to start any other tx in the meantime, as this would count against me… (I live in Wales, though, so things are slightly different here as we don’t have access to the Drugs Fund you have in England.) It’ll be interesting to see what happens when other people ask about it.
Hi Coldcapper
At my last hospital appointment my onc disussed with me the possibility of starting Afinitor. I have never had any chemo. Im on tamoxifen at present with zoladex injections. I have previously had Letrozole. My onc feels that Afinitor may be suitable for me when tomoxifen stops working. I am really interested in knowing how you get on. Good luck!! Keep us all updated. 
Would be grateful for updates as this could be a future treatment for many of us once the hormonal s cease to work. Really hope you have great results x
suzanne x
Hi Coldcapper,
I did try to send a post earlier today but it dissapeared somehow. Probaly me but here goes, I will try again. I just wanted to say that I have been taking evorilmus and exemestane since July. As it wasn’t licensed at the time, I have to go to the hospital every three weeks where I have my bloods checked then see the onc and then get the tablets. I had a scan after just 6 weeks and it showed some “marginal regression!” I was hoping for stable but this was even better!
The side effects are managable but the worst one is mouth ulcers. I have been given a mouthwash called Mu-Gard which is good and I use this 3-4 times a day but I ran out of it last week and the ulcers are back and not much fun! I will make sure I don’t run out again. I get this from my G.P. The other thing is I get very tired. This didn’t happen for a few weeks but I just rest if I get a tired day. I have had some nausea but not too bad. All these are worth suffering if the medication does some good. I feel very lucky to have been able to get this treatment.
I have another scan in 3 weeks so I will keep you updated. Good luck and I hope you get minimal side effects. xx
Thanks for this Zola
I’ve just had the first ulcer appear. Not too bad yet but will doubtless get worse so the mouthwash info is useful. My scan is after 3 months but the onc is planning to use my (very high) tumour markers to monitor progress until then.
Apart from that all very bearable. I do get periods of tiredness but as I am just coming off the end of 6 months of weekly taxol it could well be that. I certainly feel a lot livelier than I did a month ago!
I’ll post on progress for those who see this as a future option. If the results are positive enough they must surely start making it more available. For me in any event it’s pretty much the last chance saloon as chemo doesn’t seem to do much for me and I’ve run through most of the common options. There are other chemo options but I really dont fancy trying chemo after chemo and seeing virtually no change while my quality of life goes down the tube…
(this doesn’t necessarily apply to anyone else reading this - chemo works really well for a lot of people so I wouldn’t want to discourage you from trying it)
all the best
Hi Coldcapper…I’m very interested to hear that you have been started on exsemestane and everolimus …particularly after you have been on exsemestane and it stopped working. I’m currently on capecitabine after progression on exsemestane…I am coming to the end of my twelth cycle and am going to get MRI scan results tomorrow!! My markers have been stable so im hoping capecitabine still working. My onc mentioned everolimus as a possible option early in the year after it was discussed at the big breast cancer meeting in the states in Dec…but im not sure if it will be available in Wales at the moment… keep us updated on your progress and good luck! Pamx
Hi Coldcapper, glad to hear that you’re on this treatment as my Onc mentioned this to me last week before I finished my last Abraxane chemo. I’ve been googling it for more info and fully intended ringing BUPA to see where they stand on authorising my treatment, I’m fortunate enough to have been in BUPA for about 30 years, and so far since being first diagnosed in March 2010 they have forked out a massive £66,000, so I’m hoping they will help me out with this. Fingers crossed that it will prove successful for you and will follow your posts avidly. Good Luck. Xx
Hi all
very interesting reading as i had asked my onc about everolimus in july i had caocitebine but reacted badly after 2 days so was taken off it instantly i then waited a month and had another chemo epirubicin and cyclosphamide which only shrunk 1 of my tumours by 1cm prior to all that i was on arimadex that worked for 18months since finishing my chemo in july i have been on tomoxifen along with the zice trial bisphosphonate (ibadronic Acid) and calcium
i was er+ and her2- with large tumour T4 on spine and a 5cm chest wall which as now gone to 4cm this grew behind my implant which i had after full mastectomey but after reading messages by lemon grove i am now going to ask my consultant about the possibility of it changing
one other thing i am not sure if i am in the right section as i find this site difficult to find were i need to be as thought i need to be with the bone mets but i am interested how you all are on the everolimus
kay
Hi Barbara,
Hope you are doing okay with the Afinitor and not having too many side effects. I just thought I would let you know I had my scan results yesterday and everything was stable! There was some congestion on my left lung but I have just had a cold and a cough so the onc was not concerned about this at all. He said that if I had not had a cold he might have thought it was due to the Afinitor but he’s sure it’s not and it is definately not cancer.
I am to carry on with the combo and see him again in 3 weeks but then he will reduce my appointments to 4 weekly.I get my bloods checked every time and so far they are okay. He said that not everyone is able to tolerate the Afinitor. Main reasons are extreme fatigue or breathing problems. I did feel tired at first but I am better now. Also felt some nausea and I got something for this but dont need to take it now. My appetite isnt great but I am eating but my taste buds have changed. I have gone off chocolate! My worst problem was the mouth sores but I haven’t had one for over a week which is great! I have found that the chlorexidine mouth wash works better for me than Mu-Gard but everyone is different aren’t they? When I have used it I try not to eat or drink for about an hour to give it chance to work. Anyway I will be rescanned in 3 months and we will see what that brings so fingers crossed.
Do let me know how you are getting on. I’m thinking about you. So long as you dont get any of the bad side effects the smaller ones should ease as you get used to the medication.
Take care, Sheila.
Hi all
I was on a trial with Everolimus or placebo and Herceptin together with Vinerolbine from January to June this year. Back to having 3 weekly herceptin at home as I stopped weekly treatment due to SEs building up, caused by possibly Vinerolbine than anything else,although I had mouth/tongue ulcers so chances are I was having the Everolimus.I used Difflam mouth wash and found that useful, SE’s built up over time and seemed to have more and more breaks of the Vinerolbine and Everolimus. My dose was also reduced from 2 to 1 tablet a day which could be an option for anyone on it. I just found weekly treatment at hosp too much and it felt wrong so when my scan showed after initial large shrinkage it had been stable for a few months I came off it. However if it had just been Everolimus tablets I would have carried on. Had appt for results of October scan last week and was told leison on head of pancreas shows more slight shrinkage, no sign of mets anywhere else. The idea of the trial was to possibly stop the resistance to Herceptin (I’ve been on it since dx in March 2009, IBC with met to liver). I’m hoping that now it is in process of being ok’d by NICE I can have it again if need be. They say it is a new ‘wonder drug’ so lets hope NICE lets it be available to everyone that can benefit from it.
I’m very well and full of energy, I’m no longer having scans every six weeks (follow up for trial) and next appt. not until 15th Jan!!! If I’m still feeling the same then next appt. will be 3 months! Hopefully planning to go to France in the Spring.
Good luck and Best Wishes to all
xx
Hi, Onc decided that Everolimus/Afinitor was the way forward for me and BUPA agreed to fund the £3,000 + for the 4 weekly supply of pills. I should have started on them 10 days ago but as I’ve been in hospital undergoing intensive pain control treatment, with Ketamine, it was thought best to leave it today.
How are you doing Coldcapper, hope any side effects are minimal or non existent, I’ve got the mouthwash on standby, hopefully won’t need it.
Take care Christine xxx
Hi Fudgeincornwall,
It does sound like you were on evorilmus on the trial with the mouth sores etc. It also sounds like it suited you so I hope you can get it if need be. Are you on anything else beside the Herceptin now? I am Her2 neg so Herceptin wouldn’t be any use to me. I am still having side effects from the evorilmus but they are managable so will stay on it as long as I can.
Hope you have a great time in France. We have been twice and the photo of me and the dogs is on a beach in Normandy. They had passports at the time but they have run out now and they are a bit old to travel too far so we tend to go to Scotland or Somerset with them.
All the best with your treatment. Take care. Sheila
Bumping this thread up for AmandaJayne.
Thanks so much Belinda, just. Read all.
xx
Hi Zola
Hope you are are getting on ok with the Everolimus and mouth/tongue ulcers etc. are non existent or at least manageable.
I’m only on Herceptin which I have every 3 weeks at home. I had a portacath fitted when I started the trial after reading about what Vinerolbine can do to your veins and as I’ve only one arm for injections etc due to lymph node removal wanted to play safe! One of the best decisions I’ve made! The nurse is only here 2 hours and once I’m plugged in we sit and chat, have coffee and I usually bake some buns! I am very well have hardly any side effects from Herceptin. I’m on it indefinately and am hoping that eventually I’ll be able self administer it weekly once that trial has been ok’d by NICE too!
Will be asking about availability of Everolimus for me in the future when I have my appt. in January.
xxx
Hi all - a quick update on everolimus after almost three months. Side effects in the first month were unpleasant but seem to be wearing off. To list a few: nasty painful spots on my head like little boils; tiredness; bad cough; nausea. Sounds horrible doesn’t it! However thingsare settling down. The spots have almost gone, the nausea is a lot better. I still have the cough but I don’t know if that’s a side effect or just a cough.
As for whether its working - your guess is as good as mine at present, Scan in ealy Jan but so far not much movement in blood counts or cancer markers but that may be due to cancer flare. So - all waits on the scan. Fingers crossed!
Either way, happy Christmas and New Year to all
xxx
Hi Fudgeincornwall,
Sorry I have only just replied but my computer has been playing up. Just got a new one from hubby for Christmas! Am still trying to work it out!
Hope you had a good Christmas and that things are still going well. I know what you mean about your veins, I am in the same boat due to lymph nodes being removed. I am still taking the Evorilmus and coping but I think it is affecting my immune system. I have a bad cold at the moment and this is the second one in a couple of months. I dont usually get colds. Apart from that I am fine and now see the onc every 4 weeks instead of 3. I will get another scan about the beginning of Feb so will update you then.
Hi Barbara, Hope your side effects wear off soon. My mouth sores arent as bad as they were but I still get one now and again. Have a cough at the moment but I think this has come with the cold!I also had nausea at first but this has gone now. My appetite is not as good as it used to be and things just dont taste the same. I have also just started to have very soft nails. I dont know if this is due to the Evorilmus or not. I was tired at first but this seems to have worn off too. I think some side effects go after a while and then you seem to get different ones, but so long as they are managable I hope to carry on with the treatment for as long as it works.
Happy New Year to everyone.
Have only just found this thread and have read all the posts with interest as when I went to RM 18th Dec the lovely registrar informed me scan results were not good.Seems letrozole stopped working, bone mets progressed and now sign of mets in the liver.I have been given exemestane and they have applied for funding for evorilmus-I should get an answer in 2 weeks time.Interested in your side effects,cough and tiredness,as I already have those.Sruggled to get through christmas day but gave in yesterday and spent most of it sleeping.I have not told my family about the recent dx yet,I can’t really see the point until after the next scan when hopefully it will become clearer as to progression.I have a bone scan 7th january as i have been having a lot more bone pain,I had expected an mri but onc said they needed a baseline for comparison when starting the new treatment.Just wondered if any of you have bone mets and if so have you noticed any improvement.I am also on zometa but recently the pain has got worse-I know i have partial vertebrae collapse.I am not really worried about the se’s,I never really had any with letrozole which pleased onc as she thought this might prove the case with new treatment so fingers crossed.Really pleased to see this treatment seems to be working for you and am really hoping pct will fund it-bit worried about options if they don’t as chemo has never worked for me.
happy New Year to all xx
Hi,
I started Everolimus 3 weeks ago and take a 10mg tablet daily. I also have exestramene (changed from arimidex which I had for 4 years). Also I am having zometa - I have had 2 doses so far and am having 6 in toal at 4 weekly intervals. I have to go to Christies for the everolimus as they cant prescribe it for me to get locally but funding was approved so I get it there - on the same day they check bloods, do zometa and see onc. My secondary diagnosis was in Oct following my original in March 2008. Mixture of side effects at the moment but I think my body is just adjusting to the 3 new things it is being hit with. Glad I found this thread - it’s good to hear from other people too.
Wishing you all the best for New Year
Karen x