I had a mixd scan, so may be moving on from Orserdu. A shame as I feel great.
I am on the fence between Afinitor and Enhertu. I am HER2Low.
I know Enhertu is supposed to be very effective, but I am concerned about side effects (nausea, fatigue, hair loss etc.) so thought I would try one last oral treatment first.
That said, I hear Afinitor can also be rough, and not always effective? OR am I just down a rabbit hole.
Would love to hear first hand experiences from people with experience with both/either.
Thanks!!
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Pbsoup
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Hi Pbsoup. Sorry that you got mixed results from your scan and need to change treatment. I certainly understand. I got 5 years on Ibrance/Letrozole and had no side effects so I was truly bummed when I had to change....although we all know it is the nature of the disease. I have been on Afinitor(Everolimus) and Exemestane since the end of March really. I am currently taking 7.5 mg of Afinitor but depending on the results of the CT scan I had on Friday (the report is delayed because it's a holiday weekend here in Canada) I plan to move up to the full 10mg dose. Most people complain about mouth sores but I take my tablets in a gelatin capsule(bought off Amazon) which allows the tablet not to come in contact with the upper GI tract and hence I have never had any mouth sores. I do feel sometimes fatigued but no different than I did while on Ibrance and fatigue comes from the cancer itself as well. I still get bloodwork monthly but there are no issues with neutropenia as there can be for some people on the CDK 4/6 inhibitors. With Afinitor you need to watch glucose and cholesterol levels as they can be affected by the drug. So far I have had no issues.
If I were in your position I would definitely go the Afinitor/Exemestane route and leave the Enhertu for later. Good luck.
Thanks! I just read a study that dose escalation can also help with the mouth sores. Have you had any previous scans or other indications of results so far? Thanks!
Yes I get CT and bone scans every 3 months and my last set showed everything was stable. The bone scan that I had Friday also shows stable as that report is already in my portal. The CT I expect will be there tomorrow when the transcriptionists are back to work. Take care.
Afinitor isn’t a CDK4/6 inhibitor. It’s an MTOR inhibitor. ‘Afinitor is a type of drug called a mammalian target of rapamycin (mTOR) inhibitor. mTORs are targeted therapies that work by “targeting” and attacking cancer cells. Afinitor is not considered chemotherapy, which acts on all cells in the body that are growing quickly, not just cancer cells.’
It’s not for HER + breast cancer. I’ve had Afinitor and Aromasin myself but I’m unlikely to get Enhertu. I didn’t do anything to avoid mouth ulcers and I didn’t get them. I did have problems eating food as everything tasted bitter. And I ended up with liver inflammation which is a very rare side effect. So I stopped Afinitor after ten months and have stayed on Exemestane along with Xgeva since.
I don’t really think Afinitor and Enhertu are comparable especially not for side effects. From all I’ve read Afinitor is easier to take than Enhertu but my oncologist warned me that Afinitor has a high drop out rate. I don’t know what the dropout rate is for Enhertu.
My experience of Afinitor was a myriad of side effects but most didn’t affect me much. For a time I had swollen feet but an ultrasound revealed no reason. I had a blood nose quite often but it wasn’t the gushing kind so it didn’t bother me much and I had sores break out on my lower limbs and even under my toe nails. The doctor prescribed a topical ointment for that but the podiatrist had to deal with the ones under my toe nails. And I lost 30+ kg because I became anorexic. That’s a listed side effect too.
Mouth ulcers are the top side effect but it can be the least of the problems. That said, I have to think very hard to remember all the side effects I experienced because they looked worse than they were in reality.
Side effects aren’t the same for everyone which can be a good thing as for everyone who’s had a bad experience with a drug it’s likely that at least one other has had a good experience overall.
Good luck. Can't offer any advice but felt a bit like you when I had a doubtful scan and they moved me from letrozole to Fulvestrant. They didn't want me to go to a chemo drug yet as i am really well in myself. My GP said if they propose any changes in the future I should get a referral to the Royal Marsden as they have both experience and a repertoire of treatments including trials. In fact I've been well since the change and it's moving my tumour markers down. Hope you get the same outcome! Carolyn x
I started on Everolimus (Afinitor) and Exemestane 7.5 but had to go down to 5mg as my glucose levels were so high. I had to take metformin which tackled this but I completely lost my appetite, felt repulsed by food and some things tasted weird, even my beloved cup of tea! The other effects such as spots and mouth sores weren’t too bad, and I had no progression in my bones or liver after 6 months, but the pleural effusion that started previously on Capecitabine kept getting worse and I was so breathless, so I am now on Paclitaxel. Enhertu will still be on the table later on, and there is much more flexibility and freedom being on tablets than on chemo, so Maybe worth trying first. Hope whichever treatment you try is kind to you and beats back the beast! x
I cold capped every treatment every 3 weeks didn’t loose hair but had some thinning
For me at least the side effects the first year were minimal but like other chemos I began to notice increased fatigue stomach issues etc around 2 yrs in
At 2.5 yrs I was diagnosed with very mild ILD I did have a dry cough
I could No Longer stay in the trial and did 6 weeks of Presniaone and good now ,next steps will be determined after my scan on 11/27
My opinion ENHERTU works great …but like all chemo therapies the toxic effects will come it’s just a matter of time and which one
If you can successfully go the non chemo route I would go that way first
Very tough decision . Discuss with you doctor all the pros and cons of each option
My onc said he could start me on a 1/2 dose and see what happens. I thought that was reassuring. And good to hear it’s effective for you at that dose I know we’re all different but still…
Affinitor was rough for me and didn’t work. My onc took me off when I had pacemaker insertion and he told me I cannot be sure that med didn’t cause the pacemaker. Everybody is different and to try what your onc says and always other meds. I’m doing fine on celosia better than any others -my first was ibrance and letrozole which I did three years on. I wish you the best. Hang in there🌹
Hi Pbsoup! I had to come off the trial I was doing earlier this year after progression in liver and bone Mets. I’m also Her2 low. I switched to start taking 5 mg Afinitor in July and just had CT scan done again in Oct - all stable and bloodwork was excellent, so I am continuing!
I was dreading it but it’s turned out just as easy for me as iBrance and Lynparza were, without the big dips in lymphocytes. I used the steroid mouthwash x4 daily to begin but after 2 weeks had already brought it down gradually and stopped completely. I’ve only had a few small ulcers in all this time that were never a huge issue. Feeling lucky again symptom wise! Maybe slightly more fatigue at this point but I’m under a lot of other stress so it could be just that in all honesty.
My doc was thinking about bumping me up to 7.5 mg (to make it more effective?) but I deferred and stuck to 5 mg. I value my QOL too much to suffer maybe needlessly!
Thank you! This is very reassuring. I start on Monday. Not sure what dosage is--will see when bottle arrives! I am grateful I can try one more oral treatment. I joined the Afinitor FB group and it seems like a quite a few women have had good results--and longevity, on it.
There are some interesting trials now for other Enhertu-like drugs, plus the announcement that ERSO (now called something else) may finally be going to trials in a year, so I hope to buy myself a bit more time so I can avail myself of these and other options. In the meantime, if Afinitor doesn't work, I know that Enhertu is out there waiting for me... so I feel in a good enough place right now.
That’s great! I’d ask your doc today if they can prescribe the steroid mouthwash for you too. I picked that up at local pharmacy while the Afinitor is special delivery. I think it really helped me avoid issues starting the drug. My mouth never felt cleaner brushing teeth and mouth wash 4 times a day lol.
I know, it is definitely all about buying more time, that’s why I’m thrilled this drug is working out for me so far! I hope it does the same for you too. Be warned they are really pesky to break out of the individual pockets, I should probably use scissors to cut it open! I’ve accidentally broken the tablet a couple of times as they are small but long shaped. And I think that whole thing of avoiding touching your mouth with the pill is a wive’s tale to be honest. I don’t worry about it at all. Nice to know the FB group has quite a few with longer term success. Best of luck!
Good luck with starting Afinitor. It's working well for me. I don't use Facebook but glad to hear you say that people are getting longevity with it. Take care.
I'm glad to hear Afinitor is working well for you too. I'm on 7.5mg and tolerating it very well. No side effects which is important in my books. I just had my CT and Bone scans a few weeks ago, 2nd set since being on Afinitor and the results were stable. I was willing to increase my dose up to the maximum one of 10mg but my oncologist said lets stay the course as it is working and she doesn't want to risk me getting side effects with the holiday season approaching. Let's hope it works for us long term. Take care.
That’s great! Now did you start at 5 mg and work up? Or start at 7.5 mg? I took iBrance lowest dose for at least 2 1/2 years, that it was working, so presently still on 5 mg Afinitor by choice, running on the theory , ‘if it worked for that one hopefully this will also work on lowest dose’ !
No I actually started at the highest dose of 10mg because at the time the drug wasn't approved for use where I live. I was fortunate to have a kind lady send me a 3 month supply from the USA which she had obtained and then had to change treatments. When I started back at the end of February I was recovering from a 7 hour surgery from pathological fractures and then needed radiation to both surgical sites to help strengthen both areas as is standard practice for pathological fractures that require surgery. Anyway so much turmoil going on and my body just couldn't tolerate the high dose at that time. I tried but had horrible GI issues and lost my appetite to the point where I lost almost 30 pounds. Anyway I took myself off of the drug after a month to rebuild my body so to speak. After a month I told my oncologist I was willing to start back on half dose of 5 mg....which of course since I had only 10mg I just cut them in half. From that point on I had no issues whatsoever and miraculously my oncologist was able to then get my drug approved here for coverage. I took the 5 mg for 3 months and had a stable CT and bone scan. My oncologist and I decided that I would then increase the dose to 7.5mg and my most recent scans were again stable thankfully.
When I took Ibrance/ Letrozole for 5 years I remained on the full 125mg dose the entire time with no issues whatsoever. So I guess that's why I would go up to the maximum dose of 10mg anytime. I think it was my overall body condition at the time when I started the maximum dose that made me experience such horrible side effects. Now that I am back to my strong normal self dosage won't be an issue but like I said....my oncologist is very happy for me to just stay at the mid range dose of 7.5mg for now so that's what I will do.
All drugs work differently for all patients and I do believe in taking the highest dose as long as it is well tolerated but having quality of life should always be the driving force in decisions. Take care.
That is quite a story! So much info - I didn’t know that about rads with surgery for pathological fractures. I am mostly amazed that your oncologist agreed to follow you while you took a (locally) non-approved drug! (Not sure mine would in that situation). So everything you say makes sense - woohoo to 5 years on iBrance! I had to take the lowest dose because even then I still needed extra time each round to recover my lymphocytes adequately. I am glad you’re doing so well
Thank you. My oncologist is amazing and very supportive of things I want to do, within reason of course. Yes, your experience with Ibrance and decreased lab values is more the norm. Fortunately I didn't experience any real drops in values in the 5 years I took the full 125mg dose. Take care.
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