Unfortunately things are going downhill

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  • Kjones13
    Kjones13 Member Posts: 1,520
    edited December 2017

    merry Christmas Kandy! ❤️🎄

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  • RonnieKay
    RonnieKay Member Posts: 2,067
    edited December 2017

    WOOHOO! So happy to read about your tm drop, Kandy...by a whopping thousand...holy smokes!!! And I can’t wait to use craptastic in a sentence cause it’s so up my alley..crap is my favorite word...LOL!!!! I love Mike’s suggested name change...you deserve all the good news possible!!!! Merry Christmas :-

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  • lalady1
    lalady1 Member Posts: 618
    edited December 2017

    Best Xmas news - go Kandy! So excited Ibrance is working and TMs are mega dropping. :)

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  • ShetlandPony
    ShetlandPony Member Posts: 4,924
    edited December 2017

    Kandy, I just read through several pages of this thread, catching up on your story. I was on the edge of my seat and am so glad your TMs dropped recently. Following on comments by Cure-ious and Zarovka, I would ask about adding Keytruda to the Ibrance, and then if that stops working, maybe drop the Ibrance for Abemaciclib while keeping the Keytruda. Wishing you a new year with new success. May you feel better and better.

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  • Kandy
    Kandy Member Posts: 1,461
    edited December 2017

    Thanks everyone, I'm hoping that things will continue to go in that direction I have one more moth before scans. My MO was very willing to add keytruda, it was me that decided to wait. I thought I better save it for when Ibrance sops working, was that not a good decision? Lifting everyone in prayer, may God heal us all.

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  • molliefish
    molliefish Member Posts: 723
    edited December 2017

    Kandy every decision you make is a good decision, you do the best you can with the infrmation you have in the moment. My thoughts are with you. My faith is based in believing in the human spirit making the best choices for the human it is attached to.
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  • jensgotthis
    jensgotthis Member Posts: 937
    edited December 2017

    So glad to hear things are going in the right direction. You will know when it’s time to add Keytruda. It’s not going anywhere.

    Has your MO talked about switching Ibrance for Abebemivlib since it passes the BBB and may give some benefit there. I can’t remember if it’s thisnone or Kisquali that has GI side effects that can be pretty harsh - - that would not be good.

    Holding you in my prayers



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  • Cure-ious
    Cure-ious Member Posts: 2,626
    edited December 2017

    Kandy- apparently if immunotherapy is going to work, it is more likely to do so early on in MBC treatment, and it takes time to work, so not something to reach for when time is of the essence. There are many different immunotherapies, so using one doesn't rule out adding a different one at a later time- some arguments for trying it sooner rather than later.

    And Abemacicblib is better than Ibrance for treating brain mets.

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  • zarovka
    zarovka Member Posts: 3,607
    edited December 2017

    Kandy - It is extremely promising that you are responding to ibrance. You are likely to respond to abemaciclib even better. The fact that it crosses the blood brain barrier, as cure-ious points out, is critical. I would consider switching to abemaciclib.

    Checkpoint inhibition doesn't work great as a single agent in breast cancer. It will be more likely to be effective with a CDK 4/6 inhibitor. And when it doeswork it's slow. In general, not the option you turn to in a crisis. I tend to go for immunotherapy sooner rather than later.

    It is reasonable to hold abemaciclib and keytruda for later if Ibrance fails. However, it should certainly be seriously considered now.

    No wrong decisions. Just putting options out there. I'd like to see you around for a while.

    >Z<

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  • Iwrite
    Iwrite Member Posts: 870
    edited December 2017

    Kandy- such great news on the lower numbers! Hoping you continue to feel better! kraptastic indeed!!

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  • Heidihill
    Heidihill Member Posts: 5,476
    edited December 2017

    Crapbulous TM drop!! Hope this is THE uphill turnaround for you. Onward to 2018!

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  • Micmel
    Micmel Member Posts: 9,450
    edited December 2017

    Kandy~ maybe you just needed a little more time on ibrance! Some don't see anything working until six months out! This medicine has brought me into remission and I am sending strong thoughts, that it will do the same for you as well!! Wonderful drop! 🤗❣️ ~M~

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  • artistatheart
    artistatheart Member Posts: 2,176
    edited January 2018

    So glad to hear some good news from you Kandy! Z and cure-ious and others have such good knowledgable advice on treatment considerations. Hope your Christmas was lovely. Happy New Year to all!

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  • finallyoverit
    finallyoverit Member Posts: 382
    edited January 2018

    Thinking about you, Kandy. Always in my prayers.

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  • Cure-ious
    Cure-ious Member Posts: 2,626
    edited January 2018

    An interesting paper came out looking at how resistance develops in cancers treated with a CDK7 inhibitor (cousin to Ibrance)- they found that the cells evolved to increase the amount of a protein that can pump the drug out of the cell, and in that way the cells were effectively only getting a small dose of the drug. To counteract that problem, the chemists designed a CDK7 inhibitor drug that cannot be recognized by the drug pumping machinery of the cell. So cancer cannot use that approach to overcome the drug. While that's cool, now I wonder if comparable studies have been done to learn how cancer cells become resistant to CDK4,6 inhibitors like Ibrance, Abemaciclib and Ribociclib? Especially since the CDK7 inhibitors are still in early phase 1 trials, whereas the CDK4,6 inhibitors are FDA approved and we are all already taking them! And, if resistance can develop by the same mechanism, maybe there will be future versions of Ibrance-like drugs that are harder for cancer cells to resist, and we can take these modified drugs even after resistance developed...

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  • zarovka
    zarovka Member Posts: 3,607
    edited January 2018

    pretty cool cure-ious. tks.

    Kandy - Wishing you peace and strength in the new year.

    >Z<

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  • Nkb
    Nkb Member Posts: 1,436
    edited January 2018

    cure-ious-fascinating! Is a link to this paper available?

    Thanks

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  • zarovka
    zarovka Member Posts: 3,607
    edited January 2018

    I love it that the cancer finds it easier to pump the CDK 7 inhibitor out than evade it. I can hear the thing saying "Get this crap outta here!!!!"

    >Z<

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  • Blueshine
    Blueshine Member Posts: 237
    edited January 2018

    cure- ions, very interesting! Your thinking is so logical!I hope the new drugs are going to be available soon !

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  • bigbhome
    bigbhome Member Posts: 840
    edited January 2018

    Mandy, I hope 2018 is going to be your year of no progression, and no pain!

    Hugs and prayers,

    Claudia

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  • bigbhome
    bigbhome Member Posts: 840
    edited January 2018

    Hate spellcheck, Kandy! Not Mandy.


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  • artistatheart
    artistatheart Member Posts: 2,176
    edited January 2018

    Hoping things brighten up in the New Year Kandy and you are floating in the pool with Harper soon!

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  • marie5890
    marie5890 Member Posts: 3,594
    edited January 2018

    Has anyone heard from Kandy?

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  • bigbhome
    bigbhome Member Posts: 840
    edited January 2018

    Good morning Kandy, I have been thinking about you and wondering how you are. We haven't seen you around in awhile and I'm starting to get worried . Still plugging away here. Mo is very concerned about the flu that is going around. He is being overly cautious this cycle. Oh well, at least he cares! I automatically get my back up when I am told that I have to do shots and extra bloodwork, go figure...

    Anyway, I hope you are feeling good and just rockin on. Hugs and prayers,

    Claudia

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  • Kandy
    Kandy Member Posts: 1,461
    edited January 2018

    Hello Ladies, I will definitely come and write more when I can. Haven’t been well at all. Still having vomiting episodes and I’m very sick. I lost 26 pounds now and an weak as you can get. Also have shortness of breath. MO discontinued Ibrance this week. Tumor markers went over 8000. Had my second talk with MOabout end of life. My husband was there. He thinks nothing is going to stop it now and the side effects from the drugs are making the whole situation worse. He would like to go with treating to make life as comfortable as possible and let go of the drugs making me so miserable. We did agree to give keytruda a shot and see how that works. I understand what he is saying but I sure can’t believe I’m at the end. I can fool anyone, people don’t think I’m sick. Please give some advice, throw the towel in or try a little longer. I do admit I feel really bad every day. I hope y’all are all doing really well. Prayers and thoughts to each of you.

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  • Micmel
    Micmel Member Posts: 9,450
    edited January 2018

    Kandy~I wish I had a magical wand for us all, I have tears coming down my face as to think of you feeling like this and even have to ever hear any of those words muttered from an Onc. IMO I learned that it does take time for the medicine to work, but it totally comes down to you and your feelings. It's your life and your decision, I can imagine you're being torn between loving your family and loving life. There is no answer, no right reason, no wrong reason, it all rests within your own self and heart. If you're suffering and only doing the medicine for your DH and family. I read your words saying you're feeling pretty bad always! That also makes me so sad! I know when I was diagnosed, I wanted to hear stats. Now I don't. If you are having end of life talks, and you're simply not ready to hear that, just tell him. Hey. I'm not there yet. You said you don't look sick but feel sick, I understand that completely!

    Maybe you should reach out to your infusion center social worker and see if there is someone neutral you can speak with. Emotions run so high with family and you already know that they would want you to fight more. Everyone wants you to fight more. It's your body and your life. Only you can know....when you have had enough. No one can tell you differently. Although I am pretty certain no one is ever really ready to let go. I know I would be like a dog chasing it's tail trying to decide which way to go. Even if you stop the medicines. Nature will still have to takes it course. The body is stronger than we think. But one thing that has to happen is you need to be comfortable! No pain, no stresses of pains beinguncontrolled. I am not overally religious and if you are, maybe reach out to a pastor or a priest, they may have words that help you understand what you're really ready to accept or not! We love you Kandy ! ~M~

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  • bigbhome
    bigbhome Member Posts: 840
    edited January 2018

    Oh Kandy, My heart is aching for you. This is truly your decision. I honestly think that you will know in your heart when you are ready to stop. I will also tell you that qol has always been my number one priority in this journey. I am holding you close in my heart and thinking and praying for you. God always answers our prayers, he just doesn't always tell us what we want to hear. I am praying for a peaceful, pain free weekend for you. Please stay in touch.

    Hugs and prayers,

    Claudia

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  • zarovka
    zarovka Member Posts: 3,607
    edited January 2018

    Kandy - I am praying that great tides of strength and wisdom flow your way. It's reasonable to be prepared. We all need to be prepared. That may be all that the doctor is getting at. Line up your end game and then focus on getting well would be my take on things.

    >Z<

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  • DivineMrsM
    DivineMrsM Member Posts: 9,620
    edited January 2018

    Kandy, thinking of you, praying for you. Sending cyberhugs.


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  • 7of9
    7of9 Member Posts: 833
    edited January 2018

    Kandy, I just wanted to say thank you for being as strong as you can and helping us along the way. The best gifts you can give someone are hope and peace. That's what you've done by staying in touch even through the damn downhill ride this last year ....you've kept in touch with us and kept us going. This crap is really beyond our control 99% of the time. It's such a relief to find others in the storm with us.

    Life can be crappy but it's still life, even after this world, when God willing we will be truly free, truly happy and truly at peace.

    I would hope that even if you could just take a week off of everything, and can just get some food in you and rest ...then maybe hit it with the Keytruda and see what happens. Whatever you decide and whether things happen that you don't intend... we still support you one hundred percent.

    I've come across so many of your posts. We are with you. Every. Step. Of the. Way. I get that now about everyone here, whether we check in and out, linger, or are active on these boards.

    Are you familiar with the traveling Wilburys song "Going to the end of the line?". It's alright. Over and over again, Well, its alright. We're going to the end of the line...

    Hugs, prayers, Faith, Hope and Love.





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