hi I did reply to ypur original post.I was told to use salt water/corsodyl and take disprin for the painAlso use a baby toothbrush and toothpaste.I find the se’s come and go…some months I get one thing and another month another.
I have had my dosage reduced to 5mg and the se’s have become much less and manageable so maybe that is an option for you.
Have you had any other hormone therapy.Mostly oncs use everolimus to make the hormone therapy work,especially if the one you have been taking has failed.I was given it because I had progression and spread to liver whilst taking letrozole.
Hope you get some answers when you see onc.To date I have had good results on e/e but I have spread to liver and bones.Could be they are trying this instead of more chemo to see if it works.Hormone therapies often work as well,sometimes better,than chemo.Chemo has never really worked for me but I have had good results from hormone therapy.My last scans showed an improvement in bone and liver mets…just waiting for results of scan I had yesterday.I did find the first month on e/e the hardest.
Hope things improve for you. Lxx
Thanks Lucinda. I am trying the Corsodyl now and hopefully things will improve. Maybe there is also an option for me to reduce the dosage if the s/e get too bad. We will see. Great news that your last results were good, I hope the resukts you are waiting for are also positive. take care and thank you again xx
Hi sbrill.
Sorry you have had to join this thread but you will find it very helpful I hope. I have been on E/E for almost twelve months now and the SE are definately not too bad now. I had mouth ulcers very bad at first and used all sorts to help. Corsadyl was one of the best but it did cause my teeth to be stained. The dentist cleaned them up and advised me to use Oral B toothpaste. I have been doing for about 5 months now and dont get a sore mouth. Maybe SLIGHTLY now and again but nothing bad. I dont know if it is the toothpaste or just that everything has settled down a lot now.
I see the onc tomorrow and have a scan on the 4th July so will see if it is still working. I hope it is as I can cope with the SE I am getting now.
Good luck when you see your onc next week and I hope everything will be clearer.
Love Sheila x
Thanks Sheila. That’s all encouraging to hear and I’m hoping things will calm down as my body gets used to it. I will definitely try Oral B toothpaste so thanks for that tip. Willing to try anything now. I don’t want to have to stop taking the drugs as know the alternative will be far worse so will persevere. Best of luck with your scan.
Suzy xx
Thanks Suzy. Saw the onc yesterday, or rather registrar. Nothing to report really but he said that my bloods were good so I suppose thats something. Scan in one week but I suppose I will have to wait until 23rd of July for results.
Hope everyone is okay. xx
Zola, thanks for the tips.
Good luck with your scans! I am having mine on 22nd and results on 24th. 3 months check to see if E/E works for me…
Best wishes to all the E/E girls ( and boys if any?..)
Valia
x
Hi girls,
Just to let you know I have been for monthly check up, scan results and collect next lot of pills. Good news - all appears stable and the couple of dodgy areas in my lungs which may have been infection, have gone. The registrar seemed very pleased and she has done a paper on everolimus so it must be good news!! Back in a month again as routine.
Hope you are all as well as possible. Oh and I am still on the 10mg dose and it is only the fatigue at the moment that is affecting me - bit of a bugger that one as rest appears to be the only thing to help and I want to be back to having more energy. Perhaps in time…
Liz x
Fantastic news, Liz! And long may it continue!!
I started a Fatigue Management course (run by my cancer centre) today - 2 hours a week over the next 4 weeks… If they come up with any amazing tips as to how to deal with it, I’ll be sure to share!
Liz so pleased to hear your news, you have done well to stay on the 10mg dose. I am still waiting for my last scan results since being on the lower dose, and am now waiting for a bone scan to try to to work out the reason for pain in my left hip ( I have just had rads to the right pelvis). I don’t really feel up to another session of rads at the moment.
I have been told I can start a new trial if the everolimus stops working, but I am hoping the scan results will show reduction.
Angelfalls will be interested in any tips you have, I seem to be totally knackered most of the time recently, other than that I feel well.
Lynn xx
Liz, I am really pleased for you and hope the good results continue. Good luck with your results Lucinda.
I had my scan last Thursday so will let you all know if the results are good as last ones showed iffi lymph nodes in the lungs which may or may not have been a blip. We shall see.
Anyway, I thought I was over the S/E but this week I have had fatigue, (so I am hoping you will have some tips Angelfalls) I have got spots on my face and a sore tongue!! Here we go again!
I may not be able to get on this site for a couple of weeks as my computer is faulty and it has to go back to Sony so dont know how long it will be but good luck to everyone and will get on here if I can.
Love Sheila xx
I’m sure many of you will already have heard that NICE has not recommended Everolimus / Afinitor to become standard tx for those who might benefit from it. Another kick in the teeth for those with secondaries and maybe time for another Herceptin-style fight…
The following link is to Breakthrough BC’s response to the announcement:
http://www.breakthrough.org.uk/news/all-news/nice-afinitor-decision-breakthrough-responds
And this is BCC’s response:
I am so devastated by this announcement. I know that NICE were not happy that some patients had found it a treatment which was hard to tolerate, and the people involved had asked for longer to trial at lower levels and for a longer period of time. As usual the only reason they have actually declined to licence it is COST.
I can see no point in drug companies spending so much time and money developing these drugs if no-one can get access…I really hope they do not look at it that way.
As I got my funding via the drugs fund that is another kick in the guts that that will no longer be available. I have had good results on this combo and am hoping I will continue with it as long as possible, but I am upset that other people will not have the option of a drug that works.
Lynn xx
Once again money talks…
Not sure what they expect us to do… Upseting news.
I sincerely hope that those who are already on Everolimus will be able to continue to take it, but I haven’t seen anything to say this will be the case or not. Perhaps the oncs will have some information…
I also hope that the trial I’m on (the only way to get the drug in Wales), will allow Novartis to identify markers which will help predict who will benefit. That in turn should build an even stronger case for the drug to be approved and this sickening decision to be overturned.
This is very unfair! I shall be asking my onc when I see him if there is anything they (or us ) can do about this. It has worked for me for a year now and the S/E effects, though not pleasant, have been manageable.
Love Sheila. x
The Scottish Medicines Consortium haven’t approved it either.
I will check with my Oncologist too when I see him. I have my drugs through my private insurance but sickens me that they decided to take away something that works even for a small number of patients.
PET scan tomorrow after 3 months on E/E. Anxiety and stress are back… Trying to stay focus and calm. Thought sharing my feelings would help.
Good evening ladies. At least the nice weather makes our days happier and brighter.
Valia
x
Hi Valia
Hope today goes well and you don’t have to wait too long for the results, that’s the bit I hate, not the scans themselves! Although they still get me worked up.
Hope everyone one else on this combo is getting on well with it, with lessening side effects and that its doing its job.
Nicky x
Hi Nicky and rest E/E girls.
Had the scan. I know I shouldn’t complain but stay one hour still and then 42mins scan from top to toes and more stilness was not great fun… Anyway- all done now. Staff in RM are wonderul and very supportive. They thanked me at the end for coping with the scan! Well, it’s me who thank them to give me the scan. Lovely people, really makes a difference. I see oncologist on Wednesday with the results. So no much wait but still stressful. Back to work tomorrow to get distracted and to do something meaningful.
How are you Nicky? How is your treatment going
I hope the rest of E/E gorls to cope with treatment sans SEs 
Valia
x