Anyone on Ibrance or Everolimus for Stage 111?

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SSInUK
SSInUK Member Posts: 245
edited September 2016 in Stage III Breast Cancer

This site mentions Ibrance is approved for locally advanced as well as metastatic BC. Has anyone had it prescribed for stage 3 disease, if so what part of the world are you in? Or Everolimus?

After finally coming through 2 years of treatment with ever worsening prognosis (many nodes positive after NAC etc) I am now Stage 3C after the discovery of internal mammary node involvement 9 months after mastectomy. Lying awake looking at my 6 year old daughter last night I decided I can't sit back and look at 30% or less chance of survival without looking harder for some positive options

It appears I do not meet criteria for trials such as PENELOPEB btw so interested to know if anyone has been given either of these drugs outside trials

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  • muska
    muska Member Posts: 1,195
    edited September 2016

    Hi SSinUK, have you looked at PALLAS trial? They are recruiting in the US and I think they are doing the same in Europe too, I don't know about UK. I just googled and found this: Pallas - Europe

    Good luck and let us know what you find out!

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  • SSInUK
    SSInUK Member Posts: 245
    edited September 2016

    thanks - but I'm not eligible, what with everything that's gone on I've only just finished 2nd round of radiotherapy 2 yrs from diagnosis - PALLAS cut off is one year. That's why I'm wondering if anyone's just been prescribed it as its FDA approved in the U

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  • Opt4Life
    Opt4Life Member Posts: 191
    edited September 2016

    Hello, I was a node and a mm away from Stage III so I follow both boards. My MO is recommending all her early stage post menopausal patients that are ER+ and node+ for the iIbrance trials. So am getting bloodwork done next week to see if they will take me. She currently has a number of Stage 4 patients in the trial and every last one of them has seen stabilty or regression. Therefore, I'm like sign me up.

    If I'm approved, I will take it along with my Aromasin. So far, so good wth Aromasin except the daily hot flash and early morning stiffness but both I can deal with. I worry a little about the possible hair loss on Ibrance. My short pixie is thick now and I will not likely wear long hair again,but would like to keep the thickness. However this is only a small worry compared to the alternative.

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  • SSInUK
    SSInUK Member Posts: 245
    edited September 2016

    good luck. As I say I'm not eligible for the trials so would still like to hear from anyone whose onc has prescribed it outside a trial

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  • muska
    muska Member Posts: 1,195
    edited September 2016

    I don't think Ibrance has been approved for stage 3 in the US yet. The trials are still ongoing.

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  • SSInUK
    SSInUK Member Posts: 245
    edited September 2016

    perhaps the Mods can help here. The info on the site says approved for 'advanced & locally advanced' which would be IIIC.

    I'm sure I remember someone on this forum saying MO was recommending it to avoid recurrence

    Thx

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  • Xyzeng
    Xyzeng Member Posts: 13
    edited September 2016

    Hi SSinUK. It's something I've discussed with my MO. He suggested it when I expressed my worry that Femara isn't going to be enough. I'm in Singapore, currently waiting to start radiotherapy.

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  • muska
    muska Member Posts: 1,195
    edited September 2016

    Hi SSin UK, I think it was approved for those who have not yet been treated with hormone therapy but may not be approved for other cases unless there was a progression. Hopefully somebody more knowledgeable will come along and advise.

    On a separate note, have you tried reaching directly to Pfizer? What does your oncologist say?

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  • lkc
    lkc Member Posts: 1,203
    edited September 2016

    get yourself on herceptin AND perjeta pronto

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  • ann273
    ann273 Member Posts: 209
    edited September 2016

    SSINUK, your situation sounds very similar to mine. I had a loco regional recurrence and failed tamoxifen. I started on Everolimus and Aromasin. With a few tweaks in dosage I have a very normal quality of life. I work 40 hours a week, work out and stay very active, travel a lot etc. When I had the regional recurrence, I just wanted it out of my body and asked for radiation, but my doctor wanted to see how well I respond to everolimus. Within 2 months I was NED. I dealt with mouth sores, which were debilitating at first. But I take a probiotic everyday now and get one a month or even lesser.

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  • SSInUK
    SSInUK Member Posts: 245
    edited September 2016

    Ann273 that's very interesting, thank you. What part of the world are you in? And how long will you be on Everolimus? Can I ask where your recurrence was? V useful to arm myself with info to go back to Onc with...!

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  • ann273
    ann273 Member Posts: 209
    edited September 2016

    I like in the US right now. I suppose I will be on it as long as it works and is not causing any serious issues :) I had a recurrence in my intramammary nodes. Hope that helps and let me know if you need any more information.

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  • SSInUK
    SSInUK Member Posts: 245
    edited September 2016

    thank you. And good luck. I would be interested to know what hospital if you want to PM me but no pressure - what you've already told me is v helpful,

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