Just found out Palbociclib not working

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TIA9705
TIA9705 Member Posts: 5
edited June 2018 in Stage IV/Metastatic Breast Cancer ONLY

Hi everyone, this is my very first post and I am hoping and looking for some support, encouragement and even some personal insight. Please allow me to tell you my story (although I hope Im not to long).

After finding out that my BC had spread to my bones, liver, and spleen, my oncologist decided palbociclib and letrozole would be the combination to start the new battle. In the meantime, the bone mets spread to my pelvic area and I ended up with a fractured femur. Emergency surgery took me off the Palbociclib but I was allowed to stay on the letrozole. It was an interruption though and I was scared not being able to take as much as I could to fight this. Fast forward 3 weeks and I was healing and back on the meds. This week I found out that not only has there been spread (to my spine and tailbone) but my Dr. feels that the palbociclib wasn't the route to go after all. :-( Ive taken it really hard because I feel like Ive wasted all these months while this monster has spread.

So now here we are with a new medication (with all its potential side effects) but I feel like I've failed. I had heard palbociclib was the latest and greatest and its done nothing for me. So the new med for me is CAPECITABINE. Has anyone been on this? Any success with it? Its been hard to take these NINE huge pills a day and not know a thing about them. I pray they have power to them and will help me fight this with all Ive got.

Thank you everyone for taking the time to read this. I appreciate all the uplifting and inspirational stories here and hope to be that to someone else someday. In the meantime, I sure would appreciate any communication from you all out there. xo

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

    TIA- Please provide some more background. The Ibrance-Femara combo can take some time to work, and after three weeks it may be too soon to be sure that you are resistant, unless there has been some genetic analysis of the biopsy was done that shows an RB mutation or other information. Have you had a second opinion, hopefully at a major cancer center and with an oncologist who has treated many MBC patients? I understand the feeling of panic and need for speed, but you could be forgoing a potential useful line of therapy by responding too quickly. On the other hand, the molecular markers of your cancer could be informing this decision, we can't tell...

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  • ShetlandPony
    ShetlandPony Member Posts: 4,924
    edited June 2018

    TIA, Cure-ious has given good advice. If you do stay on capecitabine, you can read all about it on the thread called "All About Xeloda". I suggest you just start on the last few pages rather than read from the beginning, since it is a long thread that was started years ago. That way you can connect with people who are currently on the drug. Also I think some of those women were on crazy high doses back then and had severe side effects. Speaking of which, nine 500 mg pills is a lot, unless you are a large lady. How experienced is your onc?

    By the way, I find capecitabine (Xeloda) to be no more difficult than Ibrance + letrozole.

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  • pajim
    pajim Member Posts: 2,785
    edited June 2018

    TIA please join us on the All About Xeloda (capecitabine) thread. You're on a pretty high dose of that med (I take 5 pills a day) but I can understand your onc wants to hit it hard as it's been growing.

    You can read about how to handle the side-effects and what do to (dose reduce!!) if they get too bad.

    By the way, you have not failed. I absolutely hate it when people say they failed a medication. The medication failed YOU!!! It's the med's fault, not yours. Obvously Ibrance/Femara was not your magic bullet, though I agree that one-two months isn't long enough to judge it. With luck Xeloda will do the job.

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  • LENAGREECE
    LENAGREECE Member Posts: 27
    edited June 2018

    Dear TIA,

    Ibrance failed me too after only 3 cycles, and found myself from only bone mets to multiple liver mets too. I am on AC now as aggressive treatment and then possibly Xeloda. I thought ibrance/ faslodex the miracle combo leading to remission. Wrong. I am still in shock but try to adjust. My MO said we have many drugs to put in war. And I believe her. Stay here. Try all abt Xeloda thread. Very informative.

    Take care

    Lena

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  • TIA9705
    TIA9705 Member Posts: 5
    edited June 2018

    Hi Cure-ious,

    Thank you so much for replying to my post. I was on Ibrance/ letrozole for 4 months total. The three weeks was when I was off the meds due to the surgery to my femur. But of course I panicked that Id messed up the routine of the meds. I didn't have a second opinion but am very confident in my MO experience and decisions. Our cancer centre here is pretty amazing with people coming from other cities just to utilize the place. But because of the hype about this combo Ive been devastated that it didn't work for me. I pray this new drug is my weapon and am so happy I posted here about it. I didn't even realize it had a different name that I can now look up here and learn more about. Writing and reading here has become my safe space so Im so grateful for all of you reaching out to me.

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  • TIA9705
    TIA9705 Member Posts: 5
    edited June 2018

    Thank you Lena. Me too. Thought it was the miracle combo and was devastated to find out my MO was not pleased with how it was working out for me. And what a nightmare to find out this monster has been spreading the whole timeI thought it was shrinking. Wishing you strength with the other meds as well and hoping they work the way we hope they will. xo

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  • TIA9705
    TIA9705 Member Posts: 5
    edited June 2018

    Thank you Pajim for that comment "it failed you" Ive been repeating it in my head and its exactly what I needed to read. I am going to look for the thread on this new med of mine and hopefully will find some peace in knowing that many other women take this med and it very well could be my "magic bullet" (another great comment!)

    Each time I took the Ibrance I prayed over it asking God to make it the powerhouse it needed to be. To find out that it was all in vain was so disheartening and made me sad and scared. I will continue to pray over this new one and hope that it stops the monster from continuing to grow.

    I appreciate you posting here for me. <3

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  • TIA9705
    TIA9705 Member Posts: 5
    edited June 2018

    Thank you ShetlandPony. I am going to go find that thread and start reading. Is 9 a lot? I have no idea but yes I am a bigger woman, with this monster spreading in all the wrong places. Ive taken the pills 3 times now and haven't felt any side effects yet and hope and pray it stays that way.

    Im pretty confident in my MO's decisions, I just didn't really like when he said "what do you want to do" (when it came to deciding on meds) pffft.....I don't know!! How about just not having cancer, that was the answer I wanted to give lol.

    Thank you for reaching out to me and posting here for me. I have so much to learn and being scared and overwhelmed sure doesn't help. Going to go find the thread now and start reading....

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