everolimus and exemestane

[Sprocket dog]

Hi ladies, I had lobular breast cancer in 2011 and now have mets to liver and in peritoneal area. I'm on e/e combo as I said before. Now been on it for 9 weeks. I am on 10mg and side effects are not too bad at all. I haven't had any mouth ulcers but do have lots of spots up my nose giving me nosebleeds. My onc is a little concerned at this but has referred me to ENT. Also had some blood tests done to see if blood not clotting. Apart from that I'm feeling really well on it. Hopefully my first scan in a few weeks will be positive.🐶

[Cookie17]

Hi Kimmy,

I hope you are doing well on these two drugs. I was on them for 2 months and had to be taken off them. The reason being is I was experiencing a series of side effects that were making my quality of life unbearable. I was having mouth ulcers, skin rash which put me in hospital, dry skin on my feet that cracked and made my feet sore, a poisonous big toe, nausea, actually being sick, being put off my food to the extent that I have lost nearly 9 kilos as a result.

However, having said that I have heard stories of success where ladies have experienced no side effects and have had positive readings and reactions to their liver tumors.  My liver tumors did not respond at all to the drug, another reason for coming off it so my Oncologist said. 

It is very much trial and error with people as to what may work for some may not work for others. I wish you lots of luck and hope that it does not give you any side effects that will affect the quality of your life. 

Good luck

Cookie

[Marirose]

Hello Carolewam

Welcome to the forum it's good to chat with ladies on here and I am sure you will be able to help other ladies just starting on the e/e combo. 3 1/2years thats great wish I had met you sooner you are the longest e/e lady I have heard of. I have been pretty much on my own with so many not being able to stay on this treatment my term has been 16 months 4 stables but unfortunatly 5th one progression. I too had my first primary back in 1996 and it came back 3 years ago tumour on chest wall and mets to sacrem in spine and met in breast above the 2nd primary.

You will find many knowledgable ladies who have been on the forum 10 + the main thread being the Bone mets please join in. I'm afraid the e/e threads do not seem to get regular posts.

There is a daft thread Cyber Cafe where we can act stupid spending time away from the 'C' word

Best wishes xxx

[Carolewam]

Hi , I've only just created an account on here and just read your message. I see its a few weeks ago. How are things going ?. My situation is that I was originally diagnosed 20 years ago , was clear for 17 then it returned 4 years ago in the base of my spine and pelvis. I have been on everolimus and exemestan for 3and a half years with no progression so far. I have scans every 4 months and I know only too well that terrible fear you speak of. I feel I am walking a tightrope...carefully balancing but could slip of at any time.. 

please let me know how you're getting along. 

[imac55]

I'm on denosumab and exemestane. From day one I knew I would get joint pain, as had it with arimidex when had my primary diagnosis, but have been told it's all I can have or it's chemo. Have an extra appointment with oncologist tomorrow as the pain in my 'healthy' hip, was unbearable for 2 weeks. I thought it was sciatica, but gp said not. So it's possible spread. Its' 3 mths since a pet scan and it didn't show on that and the GP said it could be an error in how it was viewed, or it's grown. Needless to say I'm very scared. I am also getting a second opinion as my oncologist has made some errors in his letter to the gp, and my marriage is crumbling. In all the 2 weeks from hell.

[Marirose]

Hi Rachel try boots ulcer pastils they do bring a little relief also bonjela but if your onc could prescribe Genclair mouth wash that also helps with healing good luck x

[Rachel10]

Hi - I have been on this combination since Feb. it sounds silly but I got horrendous mouth ulcers and nausea which really caused an issue - so they reduced the dose to 7,5mg which I tolerated better but the mouth ulcers have been bad. I have had to have a couple of short breaks to let them heal. I found exemestane much easier than letrazole though. 

Sadly it hasn't worked very well for me. Just about to go for more radiotherapy and then Cape chemo for me (more mouth ulcers from my reading do far!). 

Good Luck to you though- there are others it has worked well for. 

[Sprocket dog]

Hi there, I have now been on this combo for three and a half weeks and I am tolerating it very well. I'm on10mg and only se's are sticky eyes, a few nosebleeds and a weird scaly red area on the front of my neck which is a little swollen but not sore, I just put lots of moisturizer on it.  Haven't had results of my first blood tests yet to see if markers are down, hoping I will respond well to this treatment as, for me, it is very do- able at the mo. Sue😃

[Marirose]

 Hi Jo and Lisa if you look on Treatments and medical issues you will find it more informative especially the earlier threads. Good Luck to you both xx

[Lisalou23]

Hi Sam, I have just read your post and wondered how you are doing ?  Just about to begin the EE combo 

[Mitch23]

Hi all

Just had scan result today and damn it the taxol has stopped working!! What a nitemare! They are starting me on the everolimus and exemestane combo hence bumping this up to see if anyone else is a) taking it and b) having any good results on it. Gonna run out of treatment if I keep using them up at this rate!!
Many thanks and best wishes to all
Jo xx

[Marirose]

Hi I have been on the e/e combo 10 months now had 1 or 2 nasty se but 3 CT scans have been stable. But I also have M.S and sometimes the onc would blame that for some of my aches and pains. It does get easier to deal with se as time goes by but I will admit after the first month having had real bad mouth ulcers the onc put me on 7.5mg I do admire those who manage on 10mg would have liked to have tried it again but onc wouldn't let me. If I can help anyone I will be only too pleased to help good luck to you all one e/e xxx

[Sarn123]

Hello I've just read your post on exementane and everlimus how's it going for you? I'm also on this combo and seem to be doing well I started in November 14 and after ten week everything had reduced by 50% so all good! I became quite run down in February and got bad infection and then shingles so had a 7 week break but back on now and just waiting for ct results from yesterday, so hoping the break hasn't set me back although feeling fit and well now and apparently done really well to shake off the shingles so quickly. How's this combo made you feel do you get side effects? Also could I ask what mets you have and what other treatments you ve tried. I haven't found many ladies on this combo but been told it's a miricle treatment what's your thoughts on this?🎀🎀🎀🎀🎀🎀🎀

[ponsmuir]

Hi Nicky and Kimmy
I'm glad to hear from others on the e/e combo.
I have just posted under the treatments section.
Hoping to see you both there xx

[nicky08]

Hi kimmy1
I'm not on is particular combination but quite a few ladies are, or have been. There's a thread on the Treatments section of the secondaries part of the forum that runs to several pages so hopefully you will find more answers and support there. Good luck with the treatment.
Nicky x

[Kimmy1]

I have just been put on these two drugs because I have 2 new lesions on the Liver, overall the Liver is much better with a decrease but because of the 2 new ones in section 8 & 4 they have changed my treatment to everolimus and exemestane. I would like to hear from women who have been on these drugs and how they are doing