Afinitor/Aromasin

amel_83 · July 9

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...

mkestrel · July 15

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.

amel_83 · August 5

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?

mkestrel · August 5

@amel_83 that's great news! I hope this continues for you. I had an appointment today and they decided to lower the dosage and stop everolimus for a couple of weeks until my mouth heals. I've been losing my taste too.

amel_83 · August 6

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.

mkestrel · August 6

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...

amel_83 · August 25

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!

emiliamarty · September 25

I just want to know what utter monster decided to flavour the gel mouthwash I’ve been given with aniseed? Bleeergh…

emiliamarty · September 25

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

amel_83 · September 26

@emiliamarty

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

emiliamarty · September 30

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

emiliamarty · October 14

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

amel_83 · October 15

@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!

emiliamarty · October 21

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

rstogether · October 24

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.

amel_83 · October 25

@rstogether

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

Afinitor/Aromasin

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