Afinitor/Aromasin
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Hi, how are you ladies on this combo?
I'm getting a rash all over my upper back and back neck...anybody else experience it? I'm wondering if it can be due to this therapy as I never had something like this before...
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Hi amel 83. I hope the rash has improved. I don't have that but I have seen rash on the side effects list. I have sores on my lips and not healing very well. Last night bleeding lips trying to eat at a restaurant 😩 annoying and painful.
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Hi
I just got my TC scan result and look like the meds are working. I'm so happy! Scan showed no progression and in some spots light regression.
Markers and liver test stable.
The onco told me in only two months of therapy he didn't expect anything better.
No very many sides effects eather.
I'm too too happy, I hope it will last!
@mkestrel I hope you are doing well. How are your lips?
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I hope with a lower dose it will resolve.
You are using the desametasone mouthwash right?
They told me to do it 3 times a day, for 2 minutes each time. And not to drink or eat for a while after. It really help.
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Thanks! Yeah I've been using the dexamethasone mouthwash I'm cutting up my food and tiny bites trying not to touch my lips, drinking through straw...
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I just wanted to say here I'm doing propolis mouth rinse. I read they were good for chemo induced mouth sores, so I tryed it out. It seem to actually work. I diluted in some water the propolis extract and rinse 2 time daily.
Before having any new supplements I always read if they don't promote cancer or interact with my medicines, and I discovered propolis may actually have anti-cancer activity for metastatic breast cancer.
A little update on my situation: my ALT rise to 90, so I'm quite concerned. They never been so high before, and just last month they where down to 40. So I'm afraid my third line of therapy already stopped working, after only 2 months. I dont have markers results yet, they will only give them to me next month. I hate to wait, and i hate they know the results and don't give them to me, as I usually show them to another oncologist as well. But i giess I will wait...
Also I hope this ALT rise is due by something else than cancer, but I'm so scared it actually mean progression!
I hope other people on this meds are doing good!
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I just want to know what utter monster decided to flavour the gel mouthwash I’ve been given with aniseed? Bleeergh…
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Amel, my ALP was 161 last week. Incredible but they don’t seem to be worried at the hospital.
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So it may be due to the medicines I would think. Mine fortunately is now stable, but nobody is explaining why is high...they just told me it was ok...
And my mouthwash is just plain bitter...terrible! Why they don't make them just slightly minty...
Does it work for you? (other than the aniseed!)
I have a sore on the tip of my tong that just wont go away
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@amel_83 Same here. Tip of the tongue and some soreness on the lips. Otherwise not so bad so far…
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Ha! I withdraw my previous breezy statement. Now on a treatment break after mouth and lips exploded in sores, and rash all over neck, shoulders and arms. Hope you’re ok, @amel_83
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Sorry about that! Hopefully with a break thing are going to be better, and you will be able to stay on the med longer.
I'm ok, thank you. I also have mouth sores and rushes on my upper back, neck and head. And diarrea.
But not that severe to have a break.
I use gentalyn beta cream (gentamicin + betametason), it work pretty well for me. Just difficult to use on scalp in between hairs...so on my head I just use it in the more critical spots.
I also get the skin of my belly, legs and upper arms all dry white, and ittle scaly, so I have to use oil or mosturizer.
Also the avverse effect, for some reason, arrive slowly, hit me hard, than get better, than come back again... like on a cycle.
I read some people get better with time, hopefully we will stay better but stable, finger crossed!
Update me when you have news please!
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Thank you and poor you. That sounds awful. I’m back on after a week off. Using Moo Goo on arms etc. I do hope you feel better soon x
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I'm just about to start Everolimus, having been on a variety of drugs up to now. Have mets in my spine and ribs. Reading your posts, I guess the thing I need to watch for most is mouth sores and high cholesterol?
Thanks for the tips already.
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Hi, I hope this medicine is going to work well for you, with not too many sides effects.
For me yes, mostly mouth sores and skin rush on back and head. Annoying, but menageable!
I eat the everolimus in a piece of wafer for medicines, not sure how it is called, than do the cortisone mouthwash, and sometimes propoli moutwash.
For the rush I use gentalyn beta.
I didn't din't get high colesterol.
Best wishes
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For the record here, I am already being switched off everolimus due to pretty rapid progression in the liver. All my markers are going way up, ctDNA Signaterra went from 6 to 60. I didn't have mouth sores after reducing the dose, and not many other major side effects. Sometimes I would get burning lips and used the dex rinse. Apparently it just didn't work on the cancer. I hope it helps others. I'm being changed to Enhertu and have to get a port....
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I have pelvic, rib and scapula mets - I've had 2 back surgeries due to degeneration - I have a numb left knee, excruciating nerve pain in my right foot with 2 toes twitching for 2 years now. I have numb fingers on my right hand and now my right arm is swollen. I am ER+, HER2-. I was on Abraxane and NED before my back surgeries in 2022, then the mets showed up. I went back to Abraxane and all was going well. Decided in Oct 2023 to try Xeloda since it was oral and a nice switch from infusion, which worked great. Oct 2024 I got 1 met which I wanted to radiate, but doc wanted me to switch to Enhurtu and was told it would not cause hair loss - "no one else on it had hair loss" was the claim - all mine fell out. It worked for 5 months then more mets. Now doc wants me to try Afinitor - but I can NOT risk any lung problems, infections or a blistered face and lips with all the other body part issues I described above. I want to go back to Xeloda with an AI or just go back to Abraxane knowing it worked for me before and didn't have NEAR the side effects I have read about with all of you describing what you are going through with Afinitor. That drug seems like a science experiment gone wrong. I am praying for all of you and so sorry you have had to deal with lung issues, rashes, swollen or blistering lips and sore throat - I just don't understand how that is supposed to give anyone quality of life. Please let me know if there is anyone out there who has had none of those side effects and has had success with no progression or actually headed towards remission. Thank you for listening and God bless all.
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hi @beachbumblonde I see this thread ended with you back in April. What is your status at this time? I hope you found something that works for you.
To other ladies on this thread I am waiting to see if I can take Afinitor and Aromasin after 1 1/2 years on Verzenio and Letrozole. @mkestrel I did see your comment on being pulled off already. I notice not much activity on this thread and hope you are all holding your own and having the best life we can have. I did have only bone mets in hip, pelvic bones, spine, ribs and skull. “Only” might not be the right word! But at least was contained to bones. I had very little progression but suddenly it metastasized to soft tissue. Possibly peritoneum and colon and now maybe liver. I am having some bladder issues and now rising liver enzymes for some reason before even starting the new medication. Waiting for liver MRI. I know a clean liver is an absolute necessity to be on Afinitor. So I have some concerns other than all of the other lovely side effects. Just wondering if anyone had liver problems on this medication. I was a big wine drinker until a few years ago so I have some concerns.Need to update my profile: orig dx 2013 hr+ her2- lobular. Double mastectomy. No treatments at all. Metastasized to bones 2024. Verzenio and Letrozole. Zometa every 3 months. Progressesion to soft tissue 8/2025. Boooooo hiss!
Any comments good bad or otherwise are appreciated. Best to you all!0 -
@marcials1 - I've been on Afinitor and Aromasin since Nov 2024. I have bone mets, and a small liver spot we are watching. I have thankfully (luckily?) had no side effects from either, except for a very few hot flashes from the aromasin. I'm prone to mouth issues, so my onc. thought I might get mouth sores from the Afinitor, but nothing. My tumor markers (CA-15.3) have just started to rise, in the last month and a half. I have a PET scan at the end of the month, and hoping it won't show any changes, so I can stay on these drugs. I MUCH prefer oral meds to injections, since I live on an island and have to ferry to the clinic (a full on day trip). I too was a big wine drinker, and though I've cut down tremendously and I'm still having a glass now and then, but it does cross my mind that wine & my liver don't mix. I did take Letrozole when this whole MBC started, I was on if for about a year before it stopped working. I didn't have any side effects from it either.
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thanks @rstogether. That makes me a bit more optimistic. Hopefully I will get cleared to get on that soon. I hope you get to stay on it too. I know once we get accustomed to a med we want to stay on it as long as possible. I wish you the best with your PET scan. I prefer oral meds also. I had the option to do a clinical trial with chemo but turned it down. I do go every 3 months for Zometa infusions and that is tolerable. Living on an island sounds great! But I guess has its pros and cons? I am done with Letrozole now too. I’m just out in the wild - free of meds until I start on the Afinitor and Aromasin. I feel great but I know that crap is growing in my body. I don’t have the taste for wine anymore so that made it easy for me to quit. An occasional margarita was nice for awhile but those are history too. I hope you continue to enjoy that occasional wine. We need some balance through all of this.
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hi @rstogether just checking in to see how you are doing. I am doing surprisingly well on Everolimus (Afinitor). Hope all is well with you too.
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Hi @marcials1 I'm doing well, I guess. The everolimus seems to be 'failing' me. My CA15-3 has been climbing, and my last PET scan showed progression in my spine and liver. I will be having a liver biopsy next week, in hopes they can better identify the cancer, and change treatment. Not sure what the next steps/drugs will be. Loathe to go back on IV chemo. Everolimus has been good to me! No side effects that I am aware of, and so nice not to have to travel because of the oral meds. So, fingers crossed for me! Thanks for asking.
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I’m sorry to hear that @rstogether. Are you on 10 for Everolimus? I’m on 7.5 but bet will be upped to 10. I’ll find out Tuesday if it is working. I am guessing it is not working but not sure. Have not seen tumor markers in 2 months. I may be going to chemo also. Not sure so shouldn’t jump the gun. Fingers are definitely crossed for you!
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