Opening a small can of worms, regarding Ibrance advertising...

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2018

    I was on Ibrance/faslodex for 10 months, and I was "Julie". I had expected all of these side effects and got nothing. It was wonderful....I progressed at 10 months, and sadly, the aromasin/afinitor combo was definitely not that easy as side effects have already made me have to stop that. People just really don't understand what we go through or how one drug can be "easy" for some and so difficult for others, but no one should ever feel or be made to feel like they are less b/c they are tolerating a treatment well.

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  • Sadiesservant
    Sadiesservant Member Posts: 1,995
    edited April 2018

    Good grief Larkin. What a thing for the nurse to say! Sometimes you really have to wonder. I had a good laugh about a discussion I had with one of the pharmacists at the cancer agency. In advising me on the side effects and protocol for Xeloda she noted that it was safe to drink alcohol in small amounts. However, she then went on to say "Of course, research has shown that drinking alcohol, even in small quantities, increases your risk of developing breast cancer by X% (can't remember the exact number but it was significant - and nonsense BTW)". I responded "Well, that ship has sailed!"

    I know it's difficult for friends and family to understand the reality that we all face. I think part of it is denial and a sincere wish for us to "get better". And, in all fairness, they just aren't as immersed in this as we are so don't really understand the ins and outs.

    Over the last 16 months I have also been more like Julie, although not all the time. That throws people. My brother made a comment about my "tenuous health" in reference to considering selling my house to move someplace easier to look after. I just had to laugh as over the last month I have shifted three yards of mulch onto my garden, continue to work full time, etc. Nobody would guess that I have MBC. In contrast, he is extremely overweight, has heart issues, MS, high blood pressure and diabetes. And my health is tenuous???? Not going anywhere anytime soon!

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  • SandiBeach57
    SandiBeach57 Member Posts: 1,617
    edited April 2018

    My loving DH told me last night that I was going to beat this cancer. We both know that it is crazy talk..so we both just live blissfully in denial. I am okay with that.

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  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited April 2018

    Ladies,

    Thank you so much for your comments. I always appreciate the perspective of others in the same boat..

    sandibeach,

    I’ve had many people say that I will beat this. Being pragmatic, I always say ,”No, I’m doing well now but the odds are not in my favor.” They then either looked crushed or tell me I shouldn’t give up. It’s hard to explain MBC to those who have no reason to be familiar with it and even harder to explain why “fighting “ or having a positive attitude doesn’t change the ultimate outcome

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  • olgah34
    olgah34 Member Posts: 407
    edited April 2018

    What knitting forum are you going to? I am a knitter, ans one time I opened my mouth about acrylic yarn is cancerogenic...Oh my! I was crucified with comments, how dare I, etc. I don"t go any forums anymore...

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  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited April 2018

    Hi Olgah,

    I'll pm you the name of the forum if you like, as I don't want to publicly shame them. Suffice to say that the forum is full of people ever ready to criticize any comments they don't like. This includes correcting of grammar and spelling ("You must be stupid for not knowing how to spell XYZ"), political discussions which have gone so off the rails that it is difficult to believe that any of the posters are adults, posting private info about members of the forum that they don't like and even criticizing others knitting skills. And, don't even get me started on the swearing and non-stop put downs. BTW, those of us who prefer to knit with natural fibers are considered yarn snobs, according to them. The moderators/administrators seem to have abandoned their jobs, so it is actually getting even crazier. I rarely go there anymore, but I still love to knit, so I think I will stick to Ravelry. I am playing with my new Addi Flexi Flips as i can't deal with DPN's. Happy knitting to you!

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