I haven’t posted on here for a long time as I couldn’t find the thread but here I am and it is interesting to read the recent posts. I am sorry to see so many of you have been on the EE combo but have had to change to alternative treatments.
I started on EE back in Dec 2012 when it was still very new. I was on the 10mg daily dose and tolerated this until July this year, when my onc took me off it to give my body a rest from the side effects which had become extreme. I had 4 weeks off and then 4 weeks on the 5mg dose and then at the end of August I went back on the 10mg dose which I continue to take.
Some new pains occurred in Nov and I had a bone scan which showed spread to 2 new areas but still in my ribs. Radiotherapy stopped pain in one area and reduced it in the other. About 4 weeks later I had bad pain at the top of my left leg and mentioned this at my next appointment and was xrayed. This was compared against the recent bone scan and showed spread to the pelvis which was cloudy on the scan so not picked up with the ribs. Radiotherapy before Christmas was given and the results are mixed - the pain seems to have moved down my leg now but I think this may be compensating for the other as I am now limping a bit.
This week I asked my onc if the EE combo is still working as we have seen this spread. He was a bit non-commital and has left me on it until my next 4 weekly appointment. In the meantime he is arranging for MRI/CT scans and said we will look at everything next month. Since having the break in summer I have had very few side effects - the worst now being nose bleeds but not 1 ulcer!!! I’m not complaining about the lack of side effects but mentally you wonder is it working if I’m not getting them - does that make sense? I accept him saying that they will be reduced as I’m off work at the moment and so am resting when needed and am not as stressed (I teach full time in a primary school) - but for side effects to go that is odd to me.
Hopefully scans will be ok but we will wait and see. I know there are many more treatment options out there and to have been on EE for 12 months shows it has obviously been working for me.
Another coming off this combo after a year. Had some more bone spread as expected so it’s either not as effective or stopped working completely. Plan of campaign now is a rads blast to lumbar spine and see what a neurosurgeon can do for t9, which is my original bone met. We will then see whether to keep with a different hormone or chemo. So not the best but by no means the worst news.
I hope those of you still on the combo or starting it, do really well and it can keep the b#ggers at bay.
Am into my third month now,mouth not too bad due to plenty of mouthwash prescribed at hospital. Anyone had problems with puffy eyes,mine feel so tired most of the time. Generally don’t feel wonderful but could be worse. How long did those of you on reduced dose take the full one?
I’ve been on the EE combo since Dec 2012 (with one month half dose and one month with nothing) on 10mg daily. I continued to work and went off sick with back pain which turned out to be further spread in the ribs and more recently in my pelvis. The side effects are bearable and reduced greatly after the break in EE. Tiredness is a bifg factor but I think we get this with all of the treatments available. I teach full time and found it difficult with tiredness and the new bone pains. I have had radiotherapy to the new areas for pain relief with mixed results. I questioned whether EE is still working for me and had a CT Scan yesterday so wait and see what ot shows and then meet with onc in a couple of weeks. Socially etc things carry on as normal but I don’t do late nights as much as I used to lol. I eat what I want and do have a drink but not regularly as my tastes have changed. Overall I think EE is worth sticking with and with monitoring by your onc see how it goes. As you can see from this forum some of us had been on it longer than others with varying results. Hope you are ok with it. Keep in touch and feel free to message me if you want to chat. Karen xx
Hi Linda
I have had 3 different treatments over the past 3years, capitabine, falosadex and now this, each one seems to work for a while then stops then its on to the next. I wonder how long it will be before there is no next. I called the hospital today because I felt really rough to see if there was a possibility of halving my pills, but other than secretary no one was there to speak to (no surprise) said someone would call me back,we’ll see. Definitely going to ask for reduced dose.
Best wishes
Jan
Jan I have been on EE 14 months now with a one month break last summer when my onc felt my body needed a rest from the side effects. I did a month half strength (5mg) and then returned to full strength so 12 months on full strength. Side effects haven’t been as bad after the break and reduced dose. I have had a few areas of progression and these have been zapped with RT for pain relief. I had a CT Scan last week and hopefully get results this week to see if EE is still working.
Linda I did get away but chose to stay in this country.
I find tiredness the worst thing - the mind is willing but the legs etc aren’t as able as they were lol.
Feeling anxious waiting for results - onc said I could ring this week as my next appointment with him isn’t for 3 weeks.
You are doing really well karen, all that time on full dose,maybe I give up to easily,just hate this nauseous felling all the time. I am getting twinges across my chest probably nothing to do with treatment.
Good luck for your scan results, mines on Friday results following Wednesday. My oncologist said that anything under 2cm. doesn’t show up,anyone else been told that?
I was all right for the first couple of months,other than a sore mouth, its just this last couple of weeks really. My be you will be lucky and tolerate it well,some do.
My oncologist did call me back Thursday evening,I went through my problems and she said to stop taking the chemo part till I see her next week. I am doing this but feel so guilty. I know I will have to take it in one form or another. I am going to ask for different anti sickness tablets,the ones I have don’t seem to work. Anyone find itching a problem,another one of mine,especially my head.
Went for my scan results yesterday, has shrunk slightly which is good news but scan showed inflammation of lung and colon so having a week off and then starting on lower dose. Just hope it woks but only time will tell.
Thought it would be a breeze on reduced dose but am not finding it so. Still having problems with puffy eyes which feel so tired. Not sure its working, the lumps l had in my skin came back In double quick time when l had my break and although have improved since starting again are still there. Thought of calling hospital but l only had a scan a month ago so decided to wait till appointment in two weeks. Hope you get on all right with not to many problems.
I think you are doing really well if you are working while on this lindyloo,don’t think I could have,good job I am retired. I am not so itchy now but on full dose my head was really bad. My cancer is still confined to the breast area and the nodules are in my skin.
Like you say on this treatment its for as long as it works,I just worry what’s next.
I am taking Everolimus and Exemestane and the latest side effect is change in taste. Wondered if anyone else has this.
Everything sweet tastes disgusting. Chocolate is the worst! It tastes bitter. Everying sweet tastes like they missed the sugar out and normally I have such a sweet tooth. It’s awful and going to ruin my holiday, when the food will be fab. I’m craving something sweet and when I taste it it is awful. Anyone else found this? Savoury and salty things are ok x
Hello,Linda how have you been? OMG! So many hot ,sunny days in the NE it’s unheard of lol. I’ve been to your neck of the woods (or near) today. We visited Washington Old Hall, I was in need of a National Trust cuppa And cake.
I hope you’ve had time to enjoy your garden,I’m getting the sprinkler out( you know it will rain now)
Huge hugs & take care,Helen xxxxxxx
Started my treatment e/e one week now. Have several mouth ulcers despite mouthwash special toothpaste and igloo. Have rash too. I have only taken 6 tabs so far will this get better or worse? Anyone know how you tell if it’s working? I still have my breast tumour and it looks bigger to me!!! The joys of new treatment!
Hi everyone and a happy 2015 to all. I was taken off evestamene fo 4nweeks due to really bad ulcerated mouth so couldn’t eat much overchristmas. Onc left me on the everolimus and now have a really itchy skin rash. Anyone had this? My onc wants to send me to see a dermatoligist but I am sure it is the everolimus as its is the only thing I am taking at the moment. I am expecting to go on lower dose exestamene next week but do I have to have the everolimus as well, any one on anything different? Feeling fed up oh and itchy!
I am amazed how long you have gone on with the full dose, I only took 10 tablets and had so many ulcers I could hardly open my mouth, I had a different kind of skin rash where the skin erupted into blisters on my chest and then turned black awful. After I stopped the everolimus the rash and ulcers took three weeks to go but a new itchy rashnhas now appeared. This is my second treatment after letrozel has failed. The se were minimal on letrozel so had a shock with this treatment and am wondering if this is how it is from now on. My onc said I should go on lower dose next week but scared now to be honest. You are a star to stick it out so long and I hope things get better for you. I think I will give lower dose a go but I will give up quicker if I get too many side effects. I have not been given any other options so will ask for alternatives when I go. Good luck hope you feel better soon xx
I managed 3 months on full dose and had so many problems my life had no quality at all, it gave me inflammation of the lungs and colon showed up on CT scan, I had swollen eyes caused by water retention, a rash which seems common, I itched,especially my head it was becoming a nightmare. Having said all that I could see it was working, I have skin Mets and they improved dramatically. I had a 2 week break in which I could see the Mets getting worse again and then started on reduced dose which didn’t work as well but side effects were manageable. I was on this for a year.
Apparently my oncologist has had so many problems with this drug that she no longer prescibes the full dose.
Well done to all of you coping with this wish I could have I really think it works.
Hi everyone went to see onc yesterday on my birthday! She said try the reduced dose for a while but she said the drug was one that was deemed too expensive by the government and has been withdrawn by the cancer drug fund. She said as I have already had it oked for me they will let me carry on so might as well try reduced dose as will not get opportunity again. I was sorry to hear they have taken it off the list as I was told it was ‘the way to go’, biological and not chemo…shocking really! I am giving it a try and have taken first dose, sitting here listening to the storm outside waiting for the sude effects to kick in. Had my birtday today instead as spent most of yesterday at the hospiral, 65 and still alive and kicking yay!!!
Hi everyone well I am on day 5 of half dose of everolimus and so far not too bad although have spots. Tonight however I have started itching and have a bit of a sore mouth but hoping that on half dose it might be manageable. Fingers crossed it will be ok. Any one on half dose? Are you managing with the se? Suppose I will just have to wait and see but worrying about se all the time!
Hi everyone well three weeks now I have been on half dose of everolimus and everything is going ok. Onc say we will up the dose next week to 5 one day and 10 the next to see how it goes re side effects. I asked if half dose would have the required effect on the cancer but she said all studies have been done on 10m dose so she is not sure. Has anyone been on 5m dose for a while? If so how is it going? Must say I am feeling so much better on 5m much more positive about this treatment.