Sorry to hear you have been ill Lynne. My onc is always saying that evorilmus lowers your immune system so thats probably why you have had the infections isnt it?. At least it sounds like you had the proper treatment. You dont get I.V. antibiotics unless you really need them but they do work quickly dont they? Hope everything goes ok tomorrow and Tuesday.
Hi Valia, I really hope the combo gets to help you. Keep us posted.
Love Sheila xx
Thank you Lynn and Sheila. Will keep looking here for updates, tips and hints. And yes certainly I will post my experiences. Thank you for the encouragement Sheila.
Lynn sorry to hear you have been poorly. Glad to hear you feel much better now.
Valia
x
Hi everyone. I have had a bad week this week. Sore throat, temperature and headaches (low immune system?) in the afternoon/evenings. The rash does seem to be better than before though so that is good. I also get really dizzy and giddy at times - does anyone else get this? I had my brain scan yesterday, results on 13th. Hopefully all will be well and the dizzy spells are from the treatment. Have been feeling really drained and tired but I am feeling a bit better today.
Nice to see you here, Valia, and I hope the treatment will be good for you.
Hope all is in preparation for your holiday Liz - I am hoping to get away for a few days once I can see a gap in hospital appointments!
Hope you are feeling better, Lynn, and all is going well this week for everyone.
Gill x
hi everyone, hope you are feeling better lyn, just to let you know have had a whole week without the dreaded mouth ulcers., had a few spots on face and head but theve all gone and ive had such a good week. lets hope it lasts. been on it for 4 months with a 2 week break. cant beleive how quickly it has gone. my liver mets has shrun k so hopefully the treatment is working. start the desemmob sorry cant r emember how to spell it, start it next week instead of the zometa, hope it is ok as i have had no trouble with the zometa. but it will be great if we can get it from the g.p. soon instead of hospital. hope yolu are all keeping well and not to many side effectss… hope my good week inspires you all, even if it doesnt last at least you know s.e. comes and goes. mags 
No hols again. Just had appendix out! Not on tablets at mo. On kindle so v short xxx
Hi Liz,
You are having bad times are’nt you? I hope you are soon feeling well. Are you still in hospital? You will need some serious pampering when you get a bit better!! The holiday will come I’m sure of it! Keep us posted and let us know how you are.
Gill, I haven’t had any dizzy spells but if you are feeling tired you could be anaemic and this could be why you are getting them. Hope all is well.
Iwent to clinic yesterday and all seems to be well. Another lot of tablets. Scan next week then appointment 3 weeks after. It’s all waiting isn’t it?
Love to all. Sheila xx
Came home yesterday. Op was late Saturday night. xxx
Thanks Mags for giving us all hope.I did get another 4 weeks pills yesterday at the lower dose,although have to wait a few days to start everolimus as only finished rads today and onc wanted my system to recover.I have to have blood transfusion next week,hopefully will give me some humph,as anaemic but am having that done at Worthing and also have to go to Worthing for denosumab next week.
Liz you are really going through the mill,take care and be kind to yourself.YOU WILL go on holiday…it will be a nice surprise when it comes.
Gillane I have had the tiredness but not the diziness,although I am anaemic.Keep an eye on the temperature,I think it is all down to low immune system.As mine has had a battering I have been switched to 5mg everolimus to allow my body to cope for a while.
Lynn xx
Hi everyone,
Just here to have a moan really! Although my SE seem to happen less now I still get them and last night had a nose bleed which lasted a couple of hours. (not heavy) Also my mouth has started to feel sore again but not as bad as it has been. I have a few spots on my face too and have been absolutley shattered today!! I went to bed last night with sudocrem on my face and a piece of tissue stuffed up my left nostril! Not a pretty site!
Anyway I have slept on and off today and I feel a bit better so I will probably have a better day tomorrow.
Hope you are feeling better today Liz and hope everyone else is fine. The weather is glorious here today. Hope you all have a lovely weekend.
Love Sheila xx
Hi girls.
Liz- hope you recover well and fast after your operation.
I had today my first everolimus and exemastene tablets. Pray to God to help me with this new treatment.
Lucinda- I also have my Tx in RM. I have followed your advise and bought kids toothbrush/toothpaste 
Fingers crossed.
Send everyone in the group good/ positive wishes
Take care girls!
Valia x
Hello Everyone haven’t posted for a few weeks as I went on hol to Cyprus, was having a lovely time when I developed an ascites for the first time. Don’t have liver disease diagnosed but apparently my peritoneum is involved. Anyway ended up in hospital where I had 4 litres fluid drained off which feels so much better. Bracing myself to starting Everolimus again and hope my guts don’t respond like they did last month. Liz, sorry to hear you’ve had surgery, get well soon, Love to everyone else, keep going xxxxxxxxxxxxx
Hi Kris,
Good to hear from you but sorry you had your holiday spoiied by having to go into hospital. Hope you wern’t in too long and that you are okay now. I hope too that you are able to tolerate the evorilmus better this time and that it kicks in.You will have seen on here that there have been some good results!
When are you back at clinic? I have my scan on Tuesday then see what is what on the 28th May.
Take care Kris. Keep in touch. Love Sheila xx
Hi everyone
I just wrote a paragraph here and pressed the wrong button and erased it completely so second time lucky!
I’m sorry about your appendix and missing your holiday again, Liz. I’m sure you will get there soon.
I hope to get away for a few days next week. I have the results of my brain scan on Monday and will make decisions from there.
Haven’t been too bad this week, the rash is a lot better. It is nice to see the SE’s come and go. I start my third month of E/E next week too and then bone scan at the end of that month which will be the tester I suppose.
Hope everyone is having a good week.
Gill x
Hello, everyone! Another one joining the E/E club!
Four weeks ago, I was booted off the Aristacats trial after a small amount of progression. But today, after a couple of weeks of tests, I was accepted on to the 4Ever UK trial - Exemestane and Everolimus for a year, so that Novartis can hopefully identify epigenetic markers and so, make a stronger case for funding of Everolimus for those who will benefit from it…
I take the first dose this evening, so it’s been really useful to have a look through this thread in preparation for the possible SEs… Here we go again! Big deep breath and fingers crossed! Hope you’re all having a good day today and thanks for sharing your experiences in this thread. xx
Hi Angelfalls,
Welcome to the thread and I hope you have good success with the E/E combo. Hope you have few SE too.
Love Sheila xx
Hello everyone!
I’m actually on my laptop so can post much more than on kindle. Welcome Angelfalls - hope the EE works well.
Not on EE at the moment after my little appendix episode 10 days ago. Looking back now, I think some of the feeling crap (if not a lot of it) may have been related to the appendicitis and not a side effect of the EE after all. I went into hospital with a temperature on the Fri night and a bit of stomach cramp. They got me on antibiotics within an hour of going in and then had examinations etc. Left me all night on nil by mouth just in case and then had a scan that showed acute appendicitis on the Sat morning so was eventually operated on late Sat night. Recovery is slow but they said it would be because it’s the op I have to get over while having the cancer too. I have stopped taking the EE for the time being under instructions from the hospital - the oncology registrar said to stay off it for now as it wipes your immune system so much and I need to get over the op first. They ahve brought my clininc appointment forward to tomorrow so will see what they say now. On the plus side the CT scan that diagnosed the appendix, showed everything else was stable. Cannulation was a nightmare for both the ct and the op and the dye blew the vein half way through the ct so my hand blew up big time. Went down quite quickly in the end. The anaesthetist could only get a vein in my foot under ultrasound at the third go as the other veins had all been used up by nurses missing the target. All a bit traumatic but at least it’s done and I can get on with recovery and back on the EE pills soon.
Sorry this has been all about me but it does show not everything is cancer related. Interestingly, the surgeon said that the symptoms I had were not 100% typical and that cancer can alter symptoms of various ailments.
Hope you all keep as well as possible - Kris, what a nightmare with needing the draining but hope you are well on the road to recovery now.
Love to all, Liz x
Good Luck Angelfalls. Hope that any SE are minimal, persevere if you can because they definitely come and go . Best Wishes Kris
Hi Sheila, thanks for your kind words, it has been a big blow having ascites develop, but on the plus side the latest US showed no liver involvement so its purely peritoneal irritation. Everything crossed that E/E will help supress this. Had a long visit from my GP yesterday who is very kind and attentive bit I can’t help feeling she is getting a bit ahead of herself by talking about more emphasis on palliative care. Until a few weeks ago I was feeling strong, doing everything I wanted, travelling etc, not much pain at all from bone mets. Since hospital I have been feeling absolutely washed out and tired, she prescibed dexamethasone to give me a boost. However today a Mcmillan nurse told me the fluid is so protein rich that often its a shock to the body when its drained. And its normal to feel washed out. Anyway I feel my Mojo returning today so we’ll see.
I hope you are relaxing into retirement, its great to hear your mouth is clear of ulcers at the moment, long may it continue.
Good Luck every body else keep going xxxx
God Liz that all sounds very traumatic, what bad luck to get appendicitis. But glad in a a way that its nothing to do with cancer. Rest up and get strong, hope you restart E/E soon. Kris xxxxxxxx
Hi Kris, Glad the scan showed that your liver is fine and hope that the irritation soon goes from the peritoneum with the EE.
Try not to take too much fromhow the GP talks as I think they aren’t all up to date with the treatments out there for us ladies! I have seen two GPsin the last 18 months and one really thought that I should carry on working . He apparently is the one who sees a lot of patients with cancer and the other, while being very kind seems to look at me with a look that says “poor woman”! Dont get me wrong, she is lovely but I like the more positive approach!
Anyway, I am sure you will soon be feeling much better.
Liz, I’m sorry to hear what you have had to go through but like you say not everything is cancer is it and it’s great that you are stable! I had a bit of trouble with hunt the vein last night when I went for my CT scan. The girl tried 3 times and ended up puting it in the inside of my arm. The man who was doing the scan said that it could be painful there when the dye went in and it was a bit. She seemed to be in a rush. I think I was the last one of the day!
Anyway hope everyone else is okay. Love Sheila xx