Yes thats correct. Have it every month. Been on it since 2014. No I don’t have any major side effects apart from feeling more tired for a couple of days after I have had it.
FF I agree waiting a month is ridiculous. I often think if there was anything seriously found a delay in treatment could be really serious. Not long to wait now anyway Monday 11 Sept.
Hope your new job is going well.
Regarding scans I don’t tend get them on a regular basis as such. Last one I had was March this year before that it was November last year.
Hi Linda,Ramade,FF
Hope you are doing well. My e combo has failed to do its work . I have mets in lungs and some lymph nodes near my neck. Waiting for pet ct result and new line of treatment. I am really depressed and confused. Trying hard not to think negative . srilata
Thanks FF for your support and kind words. I have to wait till the pet scan results which will be end of next week. I have not been on chemo after my secondary diagnosis. It was only hormone therapy. Now it will probably be chemo. Whatever be the treatment i only hope it works for some time. Hugs❤ Srilata
Dear FF, you are an inspiration for me. Your kind reply about your experience has helped me to start thinking more positively. I was very depressed and almost losing the courage to fight. But now I feel better and strong . I will get to know my new treatment next Friday when I meet my onc. For the time being I am continuing the e combo.Your scan is due in two weeks my best wishes for your scan result. Hope you have good news. You will be in my thoughts, it would have been really difficult to cope with this without all of you. Love❤ Srilata
Sorry for my late reply I am not on the combo now I am on Cap tablets as last scan in August showed up mets in liver.
Hope the next treatment you are put on goes well. It is the uncertainty I don’t like when treatment fails but I am sure there is plenty more options for you.
Dear Linda , Ramade,
Thanks for your kind support. Happy to know that your new treatment is going on well. E combo probably doesn’t work for long. I meet my onc with the scan next Friday for the next step. Hope this time it will work longer. Hugs Srilata
Dear FF, Ramade, Linda
There is some silver lining , my scan results showed suspected mets in the nodes near right collar bone. Lung infection was not mets as the earlier scan report suspected. So my Onc advised that I continue with hormone therapy till there is some change. He will see me in Dec with another scan. Thanks to all of you for being there with me. Love
Dear Linda, We always wish that the treatment we are on will be effective as long as possible. Your experience with e combo gives me a great deal of hope that this will sustain me for some years. I also find this medicine aggreable . There is very little side effect. Earlier I used to travel a lot and I am missing that. If this medicine continues then I can plan some trips.Thanks so much for sharing your experience . Hope your new treatment is proving effective and you do not have any serious side effects. My best wishes
Dear Ramade,
Yes I am planning in Dec. Fresh air and change of place does a lot of good. I hope you are feeling good and your pains have lessened. You have so much courage and I find that you can be calm and positive always. I have learnt so much from all of you. Thanks and hugs to all the wonderful ladies.
Good afternoon ladies I hope you don’t mind me joining in.
I have been told that I am going to start the E & E combination tomorrow.
I was diagnosed in Oct 2012 with primary and about six weeks later they discovered the secondaries so a double whammy.
since then I have been on letrozole - with very few side effects compared to others.
my TMs started to go up about 6 months ago and I had a CT scan which showed some changes - in my peritoneal or bowel area. I was going to start the EE combo last week but as I have been suffering from diarrhoea for a few weeks the Onc I saw wanted to discuss it with my regular Onc before I started, since EE can cause diarrhoea. I suffer from mild diverticulitis and IBS - she wondered if the changes which showed could be those two conditions worsening - I have had them for longer than the cancer but they have always been manageable and not needed medication. On first being diagnosed with secondaries I had shadows in my peritoneal area which I was told were cancer. The next scan said they were almost completely resolved and then the next one said that they were no longer visible…the other worry is that they may be returning.
she thought a CAT scan might be worth doing for clarification. At my appointment tomorrow she said that the EE would probably be prescribed so that hopefully it can start doing the job whilst they sort out the scan.
I am just getting over a cold and a cough and hoping that this won’t delay the EE further
I have read through the whole of this thread and found it very informative - I am becoming aware of the SEs and hoping that they are doable, as the letrozole ones were.
I used to post on the forums quite often, but haven’ t done so for a while, although I have read them frequently.
Hello Lynn
Welcome back …yes it’s been a while since u posted. .sorry letrozole has let you down after such a long time but e and e I’m sure will be fine too.
I’m 2 years into letrozole now and keeping my fingers crossed it’s still working .
Have u not been offered ibrance as an option as I understand it can be prescribed after just one previous hormone has failed.
Hugs xxx
Hello Lynn
I went on a website where u could ask questions as to what criteria was needed for ibrance …no age limit and only to ladies that have only had the one hormone …but did read that ladies that have had chemo might get it on compassionate grounds. .
It’s all very new so it’s worth mentioning to oncologist. …
Hugs xxx
Hi I’ve been told I will be starting on E and E any advice and how successful have everyone found it at keeping things stable. I have mets to colon and stomach lining.
Regarding combo I was on it for 3 years 7 months. I was started on 10 mg Everolimus but found had too many side effects so was changed to 5mg after a couple of months. Found after that did not get any .major side effects.
Hi. I started this about 8 weeks ago. During the first month I got really awful mouth ulcers and was told by BCN to stop taking everolimus but continue with exemestane until I saw ONC
when I saw him he wanted me to try again, but this time he prescribed mouthwash and similar products - and told me to use them to prevent instead of to cure.
I am now coming to the end of my second month, I am seeing him tomorrow. This time I have taken the full month. I did get some mouth ulcers but nowhere as near as bad as first lot. ONC did say that my body would learn to tolerate the pills and the ulcers would stop. I do not seem to have any more developing.
my advice would be to make sure that you have treatments for mouth ulcers to hand and use them at the first sign. Also buy an extra soft toothbrush and maybe an over the counter mouthwash and start using straight away.
srilata