I’ve just been put on Exemestane plus Everolimus following some disease progression (I’m only 11 days in). I can’t find any recent comments/questions about the combo on here - or anywhere else, but if there’s anyone out there who’s on it already or been on it in the past, I’d love to know how you’re getting on with it.
I was really anxious to start over with new side effects, but so far I’ve felt great. A huge relief! My sense of taste seems to have gone for a burton though, which is mildly frustrating.
I’ve been on this combination for six months after almost two years on Abemaciclib and Fulvestrant injections at which point the mets on my liver which had been surgically removed, re-appeared. A scan after three months showed a marked response which made my oncologist very happy - and me of course. I am 76 and experience the usual aches and pains I am told I should expect at my age so it is difficult to know what to attribute to the drugs, however I am pretty sure the teenage type spots are a side effect and probably the unusual fatigue (though even that could be the demands of my four month old puppy). I also get the occasional mouth ulcer.
Encouragingly, I read on here a while ago of someone who had the combo for two years followed by chemo and is currently cancer free.
I will let you know how I am doing after my next scan.
I was on that combination for a total of 26 months. Over that time the side affect slowly got worse and in the end the side affects out weighed the benefits. There was some fatigue but the main side affect was on my stomach. I think this was the longest rescheme I’ve been on.
Thanks so much for responding.
I suspect your fatigue will be a combination of everything especially puppy!
I feel far less fatigued than I have been which I’m grateful for. I’ve been given dexamethasone mouthwash to prevent the mucositis and been using it diligently so fingers crossed that won’t be terrible.
I’ve read that Everolimus is particularly good at reducing tumors so I do hope I can continue to tolerate the drugs.
I hope it continues to work it’s magic on you and keeps you well - and hopefully the puppy will calm down and give you some peace. Do keep me posted.
Gosh I’m sorry the SEs were intolerable for you. It’s one of the reasons I reached out on here because, whilst it seems to be a treatment with such great potential, the SEs make it hard for a lot of patients to continue on it.
It makes our treatment success such a lottery.
So far I’ve been spared anything other than a loss of taste (which I hope improves over time ). But it’s early days. I have read of patients experiencing stomach pain so I’m braced for it. I do already get bad indigestion - but I have ever since my secondary diagnosis so I’m used to that.
Here’s hoping you have a better time with your next concoction and thank you for sharing your experience with me.
Hi
Although bad in the end the side affects came on slowly over 2 years. Every appointment I was asked about them and said no worse than normal. Then after 2 years my bloods started to dip and I was advised to have a break that’s when I realised how bad they had gotten.
Apologies for not coming back to you before but I had trouble finding your post on the forum. Have now switched to my laptop from my 'phone - and hey presto!
My last scan showed no progressive disease but ‘hypo-attenuating lesions in the dome of the liver’ which can apparently be anything. I should find out w/c 11 December. Such is the rollercoaster that is stage 4 cancer - and all the other stages probably.
Anyway, I can now be more confident in attributing symptoms to the drugs, now I have been on the Everolimus/Exemestane combination for about eight months. Spots/lumps round my mouth continue along with the occasion mouth ulcer. Clinique does a good job covering up the former. A couple of months ago, I developed swelling in my ankles and lower legs, so much so that even though the swelling is much reduced, I still have a distinct bend mark where I flex my ankles. My skin generally seems very dry, my eyes especially (I have drops from the opthalmologist). Apart from that, I’m exhausted one day and not so much the next. This wasn’t meant to sound like one long moan - am only too grateful they are keeping me alive. Am just telling you my experience.
Most obvious change is weight loss. It’s been gradual but constant for the last couple of month and has allowed me to fit comfortably into a size 12 (rather than 14) which I greatly welcome - providing it stops soon. Bloods etc are fine so nobody is too fussed about it.
Dog ‘sort of fully housetrained’ if there is such a thing. She is now ‘family’ which is really very, very nice.
I do hope you continue to be well, have few side effects and even that your sense of taste has returned. Have you tried hot chilli sauce? (joke)
That doesn’t sound too bad Jan! Seems you’re tolerating it well. I have got something like acne that comes and goes - thankfully in the hairline so invisible. Phew.
I’ve also had the odd bout of odema in the ankles and my face. It’s not terrible, but I could do without it.
I’m in my 3rd month on the combo and they’ve upped my dose to 10mgs - got an ulcer on day 1 of the higher dose and another a week later after some crusty bread. I use Aloclair mouthwash, spray and gel and that seems to do the job of clearing them up so I’m not over concerned with that.
I was sent, tout de suite, to the Christie’s acute Dept on Friday due to breathlessness, which turned out to be nothing serious. However, they did discover I have very low cortisol (they don’t know why yet) and have medically induced diabetes which is fantastic! It’s scared me a bit as I’m not someone who gets so much as a cold (cancer aside ).
I have a bunch more tests, appointments and a brain scan planned for next week to see what’s going on. I’m hoping it’s all just a hiccup and I can carry on with the drugs - even if it means a few extra tablets for the SEs.
There is a silver lining to that litany of doom - my CT scan shows my mets are all stable again! I just have to get the rest of my stupid body to cooperate!
Keep staying well and thank you for your update - it helps.
I wanted to add more to that last post - but couldn’t see yours while I typed (on a phone).
Great to have some weightloss, I’m going in the opposite direction! I feel cheated! Oh to be back in a size 12. I imagine my weight gain won’t help the diabetes so I better watch that.
Also good to hear the pooch is faring well and hopefully more loving companion than pain in the butt.
Do be carefull with diabetes and diet. Fortunately I lost weight and am now classed as pre-diabetic rather than type 2. I was on the combo for a total of 26 months before the side affects started to build up. Oddly I only really noticed as I was ill and advised to stop taking them for a couple of weeks and noticed the side affects stop mainly with my tummy. It was then that they decided the side affects were out weighing the benefits.
Thanks for sharing your experience Margaret.
I was/am quite resentful about the diabetes - it’s an added complication that I really didn’t need.
Now that I’m on a drug to help control it my appetite has gone back to normal (plus I’m being very careful) and I’ve already shed about 4kgs. I’m hoping to put it into remission if I can. I’ll take pre-diabetes!
The oncologist has lowered my dose of Everolimus too so I’m feeling more normal.
With luck it’ll work for me for a decent amount of time.
Hope your new treatment is going well.
I wish you all the best with your treatment. I’ve been on a few treatments since including chemo infusions unfortunately I have now run out of treatments unless something new comes up. It does mean less drugs just have to get pain relief levels sorted.
As my badge says “Survive out of Spite” you dont get rid of me easily.
I’m sorry you’re currently ‘out of options’ Margaret. I do admire your mantra though. Nothing like a bit of spite to keep us going - it should be prescribed!
Never say never, a suitable trial may appear out of nowhere, but in the meantime I hope they’re able to manage your pain effectively.
Your last reply gave me a great deal of optimism about dealing with my diabetes, for which I’m very grateful. I’ve felt less of a lost cause these last few days. Thank you again.
I started this combo in November and so far its been hard going with a lot of joint pain, achiness, leg weakness, fatigue, lack of appetite, and weepiness/mood issues/depression. I think 99% is caused by the god awful Exemestane (and I did almost 4 years on letrozole with no problems) and Im not sure Im going to be able to tough this one out. I take a load of painkillers in order to somewhat function during the day and just generally feel terrible all the time. Exercise does help but Im also rehabbing a bad hip after cancer ate a bit of my pelvis last year, so if I exercise it aggravates the hip, and round and round we go.
Very very frustrated at this point as my tumor markers have come down quite a bit but I have almost no quality of life right now. I start PT for hip on Monday and will try acupuncture on Tuesday. I scan end of the month and almost hope for progression so I can get away from this awful exemestane.
Hi Sondra
I’m sorry you’ve been having such a hard time. I hope the physio, acupuncture and scans have been successful and that you’re now coping with the SEs.
I don’t think I’ve experienced much trouble from the Exemestane (that I can tell) just the Everolimus. Now that I’m back on 7.5mg instead of 10mg, I feel a whole lot better. Even my energy levels have increased which is a relief. The diabetes I’ve been gifted with however, is still a real spanner in the works, but I’m getting better at coping with that.
My main issue recently was whether or not the combo was even working on me, as some very minor tumor progression or growth was suspected. I had to have a bone and head scan for extra certainty and thankfully I’m out of the woods (for the next 3 months at least) and hopefully I can stick it out successfully for a long time. Fingers and eyes crossed!
I have no idea what my tumor markers are, no one’s ever mentioned them to me – do I have to ask for that info?
Sx
I was pulled off this combo rather drastically on 31 Jan after my scan showed ‘impressive’ amounts of lung inflammation. Feeling much better now - on Fulvestrant and Kisqali, although Everolimus really really impacted my bloods and my weight (lost 6.5kgs on this due to lack of appetite and eating) and it had started to work then…stopped.
I’m not doing too badly. I’ve been on EE for about 8 months now, had some unpleasant hiccups early on when they put me on the 10mg dose of Everolimus, but I feel fine now on 7.5mg. I have developed an acneiform rash which isn’t attractive, but if it’s working I can live with that (I think).
My first line was Abemaciclib with Fulvestrant, which worked well for 5 years - I’ve been quite lucky. I was still feeling great when I had to come off it, which is annoying. C’est la vie.
Do keep me posted.
). But it’s early days. I have read of patients experiencing stomach pain so I’m braced for it. I do already get bad indigestion - but I have ever since my secondary diagnosis so I’m used to that.
and another a week later after some crusty bread. I use Aloclair mouthwash, spray and gel and that seems to do the job of clearing them up so I’m not over concerned with that.
).
Oh to be back in a size 12. I imagine my weight gain won’t help the diabetes so I better watch that.