Afinitor/Aromasin

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...

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?

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.

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!

Amel, my ALP was 161 last week. Incredible but they don’t seem to be worried at the hospital.

@amel_83 Same here. Tip of the tongue and some soreness on the lips. Otherwise not so bad so far…

@emiliamarty

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!

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.

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....

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!

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.

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.

hi all

In a few days, I will be joining this thread after my doctor decided to stop my current treatment

Kisqali + Faslodex

and switch to Afinitor + Aromasin.

Because of progression

My doctor advised me to leave a 7-day gap between Kisqali and Afinitor.

However, my medication has been delayed, and I might not receive it within this period.

From your experience with this treatment, how many days can I safely stay without therapy before starting the new regimen?”

@marcials1

Thank you for your reply.

I am waiting for the responses eagerly because they give me an idea of what I am heading towards.

What you said reassured me about the period between the doses, because I really started to worry. I had pneumonia in October and had to stop the medication for a whole month.

However, I do not attribute the progression of the disease to this gap, because my markers had started rising months ago without a clear explanation from the tests I had done.

Thank you for sharing your experience! I’m glad to hear things are going well for you and that the side effects have been manageable. Fingers crossed 🤞 for your PET and bloodwork results—hoping for continued improvements! I’ll definitely keep you posted on my journey as well. Wishing you continued strength and good results
Also, wishing you a peaceful and joyful holiday season! 🎄Hope you get some well-deserved rest and moments of happiness amidst everything.

@marcials1

You’re always so thoughtful to update me.🧡

I really hope your PET goes smoothly and that the results on Friday bring some calm before your appointment on Tuesday. I know exactly what you mean about the “usual anxiety”… it never really gets easier, but I’m glad you’re trying to stay positive. I’m right there with you.

By the way, after you finish your PET scan, do they usually give you the CD right away? I always get mine immediately after the scan, but I never have the courage to open it. I wait for the official report, even though I have a good viewer for PET scans and I can usually read bone and node progression. It’s just the organs that I can’t interpret.

As for me, I’ll be receiving my medication tomorrow afternoon, which means I’ll start it the day after. My doctor advised me to take Afinitor  45 minutes after breakfast. But for the Aromasin, he didn’t tell me how or when to take it, so I still don’t know whether it’s better in the morning or in the evening.

And yes, this treatment line really isn’t as common as Verzenio or Kisqali, so it makes sense that there aren’t many people to compare notes with. I was hoping someone would respond to you too. Please keep me posted once you know more.

I hope the holidays are gentle with you too. We really do deserve a little joy after everything.