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Afinitor/Aromasin

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Comments

  • amel_83
    amel_83 Member Posts: 223

    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
    mkestrel Member Posts: 180

    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
    amel_83 Member Posts: 223

    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
    mkestrel Member Posts: 180

    @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
    amel_83 Member Posts: 223

    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
    mkestrel Member Posts: 180

    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
    amel_83 Member Posts: 223

    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
    emiliamarty Member Posts: 49

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

  • emiliamarty
    emiliamarty Member Posts: 49

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

  • amel_83
    amel_83 Member Posts: 223

    @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
    emiliamarty Member Posts: 49

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

  • emiliamarty
    emiliamarty Member Posts: 49

    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
    amel_83 Member Posts: 223

    @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
    emiliamarty Member Posts: 49

    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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