STAGE IV MBC W BONE METS/TRIPLE POS. TREATMENT WITH IBRANCE

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momallthetime
momallthetime Member Posts: 1,575
edited April 2016 in HER2+ (Positive) Breast Cancer

After being MBC Stage IV ER+PR+(weak) Her2- for 3 yrs, my daughter a young mom, just 31, had a Rebiopsy (bcs bone mets were progressing so aggressive) was then re-dx with HER2+. After attempting H/P/Abraxane 6 mos, then Kadcyla and still progression, we changed Onco to a supposedly more radiacal one, tried 6 dif cocktails at the same time, still progression so now he put her on Ibrance/Letrozole.

Any takers for HER2+, Ibrance being used off label, knowing that officially Ibrance was approved for HER2-

I know of many wonderful ladies with bone mets with HER2- on combo Ibrance...but not with HER2+(mets)

What's your experience? Did it lower TM? Less lesions. She has mets all over the skeleton, incl skull. So we are really trying to lessen the tumor burden.

Any advise and camaraderie will be most appreciated. Looking to share notes.

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  • pearlady
    pearlady Member Posts: 882
    edited January 2016

    Hi. Not sure how many women who are triple + are taking Ibrance. As I posted on the Ibrance thread, my onc always felt that I should continue

    discontinue to take herceptin along with other treatments. Perhaps your daughter can get another opinion. When I was forced to switch oncs after my original onc passed away, the onc I am using now was in total agreement with my continuing on herceptin.

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  • momallthetime
    momallthetime Member Posts: 1,575
    edited January 2016

    Pearlady could I ask you where you go for tx. If you do not want to be specific you don't have to. So you are on Her/Ibrance and... If it's so maybe I will ask about it. Thank you

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  • pearlady
    pearlady Member Posts: 882
    edited January 2016

    Yes I am on Letrozole, Ibrance, Herceptin and zometa. I go for treatment in NYC.

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  • LindaE54
    LindaE54 Member Posts: 2,054
    edited January 2016

    bumping

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  • momallthetime
    momallthetime Member Posts: 1,575
    edited January 2016

    HEHE Linda you are a sweetheart. Love your bump!!

    Pearlady thanks, yes she is also on Zometa, just not the Herc. You see no takers yet, I was wondering how many people would be in the same situation.


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  • momallthetime
    momallthetime Member Posts: 1,575
    edited January 2016

    HEHE Linda you are a sweetheart. Love your bump!!

    Pearlady thanks, yes she is also on Zometa, just not the Herc. You see no takers yet, I was wondering how many people would be in the same situation.


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  • pearlady
    pearlady Member Posts: 882
    edited January 2016

    I really don't think there are many women on this combo. Mostt insurance will not approve ibrance if you are her2 positive. Another example of the problems with our medical system.

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  • momallthetime
    momallthetime Member Posts: 1,575
    edited January 2016

    Pearladay you make a lot of sense - you think I should change how I posted the post?

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  • pearlady
    pearlady Member Posts: 882
    edited January 2016

    Not really change how it is posted but probably pose the question on tthe Ibrance thread. I've been on the thread since the beginning and your daughter is first person besides myself who I've seen as triple positive and on Ibrance. There is aso a triple positive discussion board but most of the women are not stage 1V. At least that's what I remember. You may want to try there to ceck. O am praying for your daughter.

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  • momallthetime
    momallthetime Member Posts: 1,575
    edited January 2016

    Pearlady - I considered posting on the triple positive one and on the Ibrance - but the talk is a different one, and i read some of the posts, and they are either hopeful to be done or scared of stage IV so I feel bad posting about stage IV stuff, you understand? I even put it on my favorites but first they can not help with advise and I don't want to put them in an uncomfortable position. I know it's strange, but even just being able to get this exchange with you it's great, thank you so much. Monday is her weekly BT, so far she is still in her first month so it's weekly, let's see what the results will show. Thank you for being there.

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  • pearlady
    pearlady Member Posts: 882
    edited February 2016

    Moma (I hope u don't mind me calling u that) I haven't been on that thread for a couple of years. I remember thinking that they are in a different place than I am. As I said previously I think we are the only 2 on the Ibrance thread. I really hope that your daughter does well on Ibrance since it's a relatively easy drug. But I really believe with all my heart that you should get a second opinion regarding the Herceptin. I forget, did your daughter get Perjeta? What part of the country do you live?

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  • pearlady
    pearlady Member Posts: 882
    edited February 2016

    One more question. Has her onc ever mentioned radiation where the tumor burden may be high?

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  • momallthetime
    momallthetime Member Posts: 1,575
    edited February 2016

    Pearlady yes she was on Herceptin Perjeta at the same time, and Abraxane. It did not help at all, she had more progression with that. She has lesions throughout her whole skeleton, I saw the PET/CT it's like a Christmas tree. She has in her skull very close to the brain. She had Gammaknife to the area, twice. She had rads in some other places also. But because it's all over, they don't really have a "best" place to target. They are always hoping "the treatment will heal".. Unless she can't bear it, then they would do something about it. Of course my concern is always the head area, because of the brain. We live in NY. She was in a large Cancer Center in NY, but Onco was getting very discouraging, she moved now to a smaller setting, with an Onco that is known to treat METS and does not have to follow protocol from a large Industry. He has a private office.

    He did tell me the next tx he'd think about is Tykerb. Either by itself or with Ibrance. Let's see what the numbers show this week. I will keep you posted. Everything about her was rare, she got this horrendous disease at a very tender age 25/26 it was aggressive from the get go, then she got mets 2 yrs in, she had no respite! her status changed to HER2+ > Everyone was dancing around Herceptin Perjeta as miracles, it did not work for her, Kadcyla also a very acclaimed treatment did not work. And now we are here. She was on everything else already.

    Oh sweetie, and btw, MOMMA I am. By all means.

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  • momallthetime
    momallthetime Member Posts: 1,575
    edited April 2016

    Pearlady, how are you doing? Dani is on her 3rd cycle of Ibr/Letr. Coming along. I so wish more people would join this thread. take care, hope to hear from you.

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