Ibrance (Palbociclib)

1532533535537538945

Comments

  • jaycee49
    jaycee49 Member Posts: 1,264
    edited March 2019
  • LaurenH
    LaurenH Member Posts: 382
    edited March 2019

    Hi all - been away from BCO for a bit (I do that when work gets intense) and I just started reading today and saw the update in Z. I didn’t know her well but she was the 1st person who replied to me on these boards with the most comforting message of support, information and encouragement. I’m so sad to see this news. May God bless us all.

    Love to all,

    Lauren

  • Maire67
    Maire67 Member Posts: 418
    edited March 2019

    I’m so sorry to hear about Z. She inspired me with her research and kindness. This week I lost 2 wonderful women from my mets group. It saddens me so much. I’m trying to live every moment joyfully in honor of them and all they gave to us. Sometimes it is so hard. Hugs & Love to all you dancers. Maire


  • sandibeach57
    sandibeach57 Member Posts: 1,387
    edited March 2019

    Hello BCO friends! I will be checking in less frequently so I can use my "spare" time in the garden with my DH. Just need a little break from reading and researching about breast cancer on a daily basis. My MO suggested that I work on increasing my walking/running to cheer me. She is a runner and knows how meaningful exercise is to me.

    My next CT and bone scans are in April, don't foresee trouble or change in Ibrance..but you know how things can change. Just started month 27, cycle 29.

    Happy Springtime. I live near the ocean, so waiting for the Ospreys to return.

  • Gumdoctor
    Gumdoctor Member Posts: 618
    edited March 2019

    Sandibeach - You go enjoy that ocean and the gardening. I get it and am sure many here do too.

    Some days I can't bear to open BCO.org for fear of what I will find. And other days I check it 20 times for updates and connectedness. So few other people in my life understand anything about it. One of my family members asked me how I fill my time now that I am not working...she loves me and meant well...but has absolutely no idea what this is like.

    Please put your toes in the sand for me just once, when you think about it...

    Gumdoctor

  • LaurenH
    LaurenH Member Posts: 382
    edited March 2019

    Totally get that, Sandibeach. I tend to take work breaks from here (when work and life get busy and I feel I can’t devote the appropriate emotion and care). There is something wrong with this picture! I should be gardening near the beach! :-) Blessings to you and best wishes in your upcoming scans!

    Love to all,

    Lauren

  • Jaylea
    Jaylea Member Posts: 440
    edited March 2019

    Hi all, I'm finally home and settling in to a whole new normal. G-tube isn't too bad, and bottom line is that I'm getting nutrition while waiting for next step. Even though I had an endoscopy 6 weeks ago, I had another while in hospital. This one showed a stricture in my lower esophagus with a small (.6cm) mass wedged in the esophogeal wall. I need an ultrasound-guided egd to get a biopsy, which is scheduled the 18th. I'm waitlisted so fingers crossed I can get in sooner, because I'm off all treatment. MO won't consider any treatment until I get biopsy results. It's likely bc, but what a weird place to present. Hopefully it will respond to tx and I'll be able to eat and drink again. Thanks again for your support.

    Wow, just devastated over Z. She was a Fierce Woman, and death does not extinguish that kind of light. We will carry her story with us.


  • PatgMc
    PatgMc Member Posts: 1,312
    edited March 2019

    Jaylea, your situation sounds a lot like my sister's and they fixed it surgically. I'm praying for exactly that for you.

    After reading your tribute to Z, I've decide to add Z to my signature here during March. Anyone want to join me?

    Love from PatGMc Z

  • snooky1954
    snooky1954 Member Posts: 850
    edited March 2019

    Jaylea   So glad that you are home and you seem to be handling this new normal very well emotionally.  I'll be praying for the best possible outcome for you.  God Bless and HUGS 

  • Gumdoctor
    Gumdoctor Member Posts: 618
    edited March 2019

    imageZAROVKA - Katharine - This is how she would want us to remember her...Smiling as she runs in the opposite direction from "STOP"...

    Photo from Facebook, 2012.

    I spent some quality time online, learning about our well-loved MBC sister this morning. I quickly discovered things I did not know about her professional training and involvements and many amazing things to which she committed her inordinate talents. I found her Facebook page and some beautiful pictures including this one. I chose this one to post quickly on the Zarovka thread many of us have visited over the last few days...

    I just looked at this beautiful picture again tonight...and realized how symbolic it truly is...the symbolism was lost on me in my sadness and admiration this morning...

    Notice the stop sign in the background...notice the direction she is running...she is running in the direction OPPOSITE the sign telling her to stop...this is the way she lived...this is the way she fought MBC...SHE DID NOT STOP FIGHTING...and now we have this symbolic visual image to forever remember her telling us and showing us, by example, this simple message:

    DO NOT STOP FIGHTING.

    Gumdoctor (and Z)

  • Gumdoctor
    Gumdoctor Member Posts: 618
    edited March 2019

    Jaylea,

    So grateful to hear you are home; and they found something to follow up on...praying for answers and relief for you...

    Gumdoctor (Z)

  • jaycee49
    jaycee49 Member Posts: 1,264
    edited March 2019

    Jaylea, so glad you are home. At least you can get some sleep. It always amazes me that they want you to rest but in the hospital, that is not possible. They are always waking you up for something. I hope you can get the biopsy before the 18th but it's not that far off anyway. And some smart person posted recently (don't remember who) that they take you off all tx before starting a new one anyway to "wash" out the old before starting the new.

    What you wrote on Z's thread was wonderful, as usual. I guess she is part of all of us now.

  • LaurenH
    LaurenH Member Posts: 382
    edited March 2019

    Jaylea - Home is a good place to be. Hoping you can rest while you wait for insight on this thing they found. Maybe it is some benign growth that just needs to be removed. One can hope! Praying for you.

    Love to all

    Lauren Z

  • LoveFromPhilly
    LoveFromPhilly Member Posts: 1,019
    edited March 2019
    jaylea - so glad you are home and adjusting - and remember, this too shall pass. When things get rough I try to remember it as a blip on the roadmap of life. Easier said than done of course.


    I can also really understand Lauren getting busy and taking breaks from the boards. I am similar to what someone else posted: some days I forget that I have this diagnosis and am busy with life and don’t check in and then there are some days where I obsessively check these boards like 20 times a day or more. Honestly, I prefer checking in with you friends than looking at Facebook or Instagram which I left because they depressed me too mcuh. Something about seeing people living out their lives with families and children and marriages and the normalcies of life. When I feel like I am often an alien in my body just anticipating the other shoe to drop.

    I try to live as normally as possible, still work part time and go to the the gym regularly and go out on dates and spend time with family, but it all seems now like it is more squeezed into a moment by moment of doing everything I can to be present in the moment and enjoy it all while it is still going so well.

    I try to remember that I am living my life and happen to have this diagnosis rather than allowing this diagnosis to control my life.

    It gets hard when people like Z leave their bodies. It is such a huge reminder of our mortality that could shift at any given time. When we lose another sister or brother to this disease it makes an impact on our heart and spirit.

    Just processing here. Love and hugs to all today!
    Brenda
  • cure-ious
    cure-ious Member Posts: 2,869
    edited March 2019

    A new discussion about post-endocrine therapy considerations was posted on OncLive:

    https://www.onclive.com/publications/Oncology-live...

    I wish they'd mentioned other drug combinations that can be tried before moving to chemo, but I guess those are mostly in the realm of clinical trials. One interesting point is trying combos that include immunotherapy after CDK4,6 inhibitor use...


  • LaurenH
    LaurenH Member Posts: 382
    edited March 2019

    Brenda/Love - Thanks for processing out loud. It helps me process too. :-)

    While I was away, I saw there was a discussion about Bone Strengtheners and I wanted to share my experience.. After my dx 1 year ago, my MO said NO to xgeva/ zometa etc because I had a single bone met in my rib that we radiated, so he felt the risk of long term side effects wasn't worth the reward in my case. Also - my most recent dexa scan showed normal bone loss for my age (thank you to my Polish grandmother with the strong bone genes). In addition, I am teeth grinder and have been in treatment for TMJ, so he felt the potential for jaw issues wasn't worth it. Even still, I brought it up at every 3 monthly appt because it felt like I was the only person on earth with bone mets who wasn't on one of these. At my January appt, I mentioned it again and he said, because there is some evidence (studies were done with zometa) that these can help ward off new bone mets (and because I am relentless in inquiring about it) let's do a 2x per year "osteoporosis" dose of zometa. I had my first one in February. Unfortunately, it was at a time when work was busy and I didn't read up on side effects and such and I went in completely unprepared for the 2 days of bone pain (holy crap did that hurt!) and nausea that I experienced. Thankfully it was only a couple of days, but I was traveling for work those days so it was inconvenient. I've since reviewed all of your advice and I will be better prepared next time. I still think I should be getting these more often than every 6 months (I have a tendency to overdo everything - my MO jokingly calls me a bully) but I need to accept what I've got and move on.

    .Love to all,

    Lauren Z

  • karenfizedbo15
    karenfizedbo15 Member Posts: 719
    edited March 2019

    Ladies, you are all Amazing! Such a relief to hear folk thinking the same as me ... want to know stuff and help/ support and empathise with those who have loved ones who have died, as we all will at some point....but can't live with the thing in my face every day, so need a break. We're all trying to live in the best way we can I think.

    Thanks Curi-ous your links to research are very helpful

    Jaylea delighted you are home!


  • Daniel86
    Daniel86 Member Posts: 207
    edited March 2019

    Timothy, yes my wife has had exactly what you describe all over her cheeks for about a couple of months.

  • Daniel86
    Daniel86 Member Posts: 207
    edited March 2019

    Thank you Lauren for your comment about bone strenghteners. I was the one asking as my wife hasnt been on any of them for the past year of treatment. You just gave us more food for thoughts.

  • PatgMc
    PatgMc Member Posts: 1,312
    edited March 2019

    Love from Philly, In 25 years of this BC journey I've learned that there are lots of people dying from other things. Many of my friends on Facebook have been diagnosed with worse things than we have and some have died suddenly from things they didn't know they had. This just happens to be the way we're learning the meaning of life, it seems.

    I'm thankful to be on this journey with all of you, to know others truly get what the feelings are that bubble up when something new confronts us.

    I'm also glad we accept that this life isn't really what it's all about. There is a wonderful eternity ahead of us with no sorrow and no pain. Thank God we have that to look forward to.

    Love from PatGMc Z

  • husband11
    husband11 Member Posts: 1,287
    edited March 2019

    Daniel86, did it (the rash) just go away on its own?

  • Jaylea
    Jaylea Member Posts: 440
    edited March 2019

    Gumdoctor, love the shot of Z. Stop signs were merely a suggestion to her. Sending extra love across these boards tonight.

  • cure-ious
    cure-ious Member Posts: 2,869
    edited March 2019

    Hi all- the AACR (American Assoc'n for Cancer Research) annual meeting will start at the end of the month, and the abstracts are already available online.

    A few interesting tidbits about CDK4,6 inhibitors; apparently CDK2 up-regulation can drive resistance, and interestingly, Abemaciclib, which hits a broader group of kinases that Ibrance or Ribociblib, can also inhibit CDK2. Therefore, Abemaciclib might be a good next-up drug to try when resistance to Ibrance happens:

    I can't get the meeting links to work, but here is the relevant part of the abstract:

    Abemaciclib has targets and activities not shared by palbociclib or ribociclib including: induction of cell death (even in pRb-deficient cells), arrest in the G2 phase of the cell cycle, reduced drug adaptation, and unique transcriptional effects in vitro and in vivo. These activities appear to arise from inhibition of CDKs other than CDK4/6 including CDK2/Cyclin A/E and CDK1/Cyclin B. We propose that inhibition of these kinases by abemaciclib target known mechanisms of resistance to CDK4/6 inhibition and thus elicit a response in cell lines that are resistant to palbociclib or ribociclib.

  • LaurenH
    LaurenH Member Posts: 382
    edited March 2019

    Thanks Cure-ious -

    I also just posted this on the Bone Mets thread, but sharing here to:

    https://www.dana-farber.org/newsroom/

    This article says there is evidence that taking an Ibrance break may reverse resistance to the drug... which is pretty exciting news.

    Love to all,

    Lauren

  • husband11
    husband11 Member Posts: 1,287
    edited March 2019

    That's a very exciting discovery Lauren. I hope they can quickly confirm whether the same reversal to resistance can be demonstrated in humans.

  • JoynerL
    JoynerL Member Posts: 1,392
    edited March 2019

    Wow...this IS exciting, Lauren and Cure-ious!

  • chicagoan
    chicagoan Member Posts: 1,030
    edited March 2019

    Very interesting developments, Lauren and Cure-ious! Thanks for posting.

  • LaurenH
    LaurenH Member Posts: 382
    edited March 2019

    I hope so too, Husband! This concept needs to be fast tracked. Would be interested in Cure-ious’ thoughts on this article also.

  • jaycee49
    jaycee49 Member Posts: 1,264
    edited March 2019

    Jun 20, 2018 02:52PM jaycee49 wrote:

    I got another clean PET scan report. That's 25 cycles taking Ibrance plus five months I was off of it for various reasons. 30 months at 75 mg. (or nothing) with no progression. My theory is that I am fooling the cancer by not giving it long enough to see the drug and find a way around it. Probably not a scientifically sound theory but it works for me.

    Today, March 8, 2019

    I rest my case. It just took the scientists a while to catch up with me. I DO NOT recommend taking months off but I do feel validated. I also have micro-progression so there's that.

  • LaurenH
    LaurenH Member Posts: 382
    edited March 2019

    Jaycee - you are clearly ahead of all of us, including the scientists! congrats on your scan! LOVE LOVE LOVE this news!

    Love to all,

    Lauren