I am reaching out reference feedback on the Exemestane and Everolimus ( EE) treatment for SBC . I have lesions in spine, pelvis, occipital and just recently an additional 2 small ones in my liver. My oncologist had taken me off Palbocyclib and Letrozole ( which had worked successfully for 2 years) and advised EE . I am just seeking feedback on side effects and or any alternative treatment someone may be on.
Thankyou.
Xx
I was on ibrance and metropole for 3.5 years. On EE my hair grew back and my lungs got congested. It had little other effect and so I switched to piqray after 5 months, with fulvestrant and Xgeva. We’re all different, so I hope it works for you. (Loved my hair!)
I've been on Exemestane for a bit over 5 years and have no had problems with it. It's third line treatment for me, after almost five years on Letrozole and over 9 years on Faslodex. We do each have our own experience with these meds but those of us with E + MBC, bone mets only, and a good response to the first anti-estrogen med, like Letrozole, often do well for a long time. I've also been on Rx med especially for bone mets, first Zometa and now Xgeva. The biggest side effect I've had from any of these meds is extreme hot flashes, but RX Effexor has kept that in line. I was diagnosed 18 years ago with extensive bone mets from the beginning. I don't know what treatment protocols are in Britain, but it might be helpful in the long run ifyou ask your onc why they aren't prescribing Faslodex instead of Exemestane. I've known several women who have gotten longer on it after having success with Letrozole. Just a thought and your onc may have very good reasons for going to EE next. If you have lung issues with the Everolimus, report it immediately as it and similar drugs occasionally cause damage to the lungs. That happened to me with Ibrance and the damage is permanent, and I wish the drug companies would underline this side effect (happens with about 1% of us, 1 in a hundred, so not very common, but it can be a big problem when it happens.) I hope you will do well with EE for a long time.
Thankyou for the observation reference lung damage, I have noted that as a possible side to watch out for. The reason I cannot have Faslidex is that the agreed approved protocol is Everolimus with Exemestane and they cannot deviate apparently . I appreciate you mentioning it though, thankyou.xx
wondering why you were taken off ibrance
They assumed it had stopped working for me as the cancer had sadly spread to my liver showing 2 new lesions ..xx
Must point out each of us is different but I will tell you about my experience.I was on high dose of both Exemestane and Everolimus after Letrazole and Ibrance stopped working.
First six months I was fine then my body couldn’t tolerate the high dose. I had impaired liver and kidney function, low folic acid, anemia and was severely dehydrated. I was taken off it immediately and given a two week break. I then went on half dose and was absolutely fine until 6 months later and it stopped working for me. I start Xeloda tomorrow.
Again I must emphasise that was my reaction. I really hope you cope with it well as many do.
I am also in the UK. Thank goodness for the NHS.
Best wishes
Hi, thankyou for the feedback that is really useful to know, as I was thinking well at least I can reduce the dose if necessary. It is so scary when you read the side affects and I was so lucky on Palbocyclib as I had very few side affects. Fingers crossed it will work for me and give me a bit longer to enjoy life.Yes indeed we are lucky to have the NHS, Wishing you good luck with your Xelodo treatment tomorrow .xx
As Cheryl mentions above we are all different on this MBC journey. I have bone only disease and was on Exemestane and Everolimus for six months from last summer. Unfortunately it didn’t work for me and it didn’t halt the progression of my disease. I recently moved on to Fulvestrant injections which, as you say, is the usual NHS protocol.I do feel better on this new treatment so I’m really hoping to get a good run on it.
I was disappointed E&E didn’t work but I was not sorry to leave the (relatively mild) side effects behind. I had soft stools, rumbling digestive system, mild nausea, lost my sense of taste (everything was either metallic or tasteless) and my nails have been left in a terrible state. But I am hoping they will improve now I’m off those drugs. My sense of taste returned to normal in a matter of a week or two.
We are all different and we don’t all get the same SE’s. But that’s my experience for what it worth.
Good luck with your new treatment plan. 🤞🌸
Thankyou Stardust 1965, I appreciate the feedback. Some of your side affects I did experience with the Palbociclib so I am used to that plus I have lost alot of hair (probably 50% thinner). Sorry it did not work for you, but it does sound like fulvestrant is doing the trick which is great. I will give Everolimus a go and see what happens.😀...fingers and toes crossed.xx
Many women have good results for many years on E&E. I really hope you are one of them. 🤞My hair also thinned out by about a third but grew back while I was still on Ibrance. I am back to healthy hair from that uncontrollable frizzy look. I’ll take that as a small win. 😊
Thankyou, so do I...Good news on the hair!! That is a definate plus, it seems a small thing compared to everything but your healthy hair growing back is wonderful..🥰
Exemestane 
Faslodex or exemestane?
Everolimus and Exemestane 
Afinator and Exemestane
Ibrance stop working 
