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Ibrance (Palbociclib)

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  • elenas401
    elenas401 Member Posts: 170
    edited May 2020

    IntoLight: what was your treatment after I/L. I'm going on 3 1/2 years. I wonder what my next treatment will be. Wish there was something new and promising in the pipeline for HR+ MBC.

  • intolight
    intolight Member Posts: 2,323
    edited May 2020

    Elenas, my next treatment after I/L has not been decided yet. I had an ultrasound to see if a biopsy is feasible but was told this morning my tumors are too small and not in a safe enough place in my liver to biopsy. I have at least ten in the liver with additional progression in my sternum and spine. So we do not have specific information for the right medicine. My MO mentioned Xeloda as a possibility, but so far I am still on I/L waiting for the decision. I have not visited with her since the progression was discovered on my last scan, just spoke on the phone. I have an appt June 3rd for face-to-face which is good timing as it is during my off week. I know my MO will consult with the other oncologists on her team and do as much testing as she can. She has experience and I trust her. We discussed whether I wanted to hit it hard with chemo or whether I preferred to see if there was a promising oral drug since I responded so well to Ibrance. Depending on the additional tests, we shall see. I will let you know. I am not as knowledgeable as Cureious and some others here are, but I have been reading on the liver mets thread. Xeloda seems to work for some there.

    I was like you wondering ahead about my next treatment knowing it would come some day. I am trying my best to stay positive. It is difficult when we are quarantined in a small condo with no place to go. I walk the block sometimes, but am waiting for the day I can actually park at the beach and walk there. I can't walk the mile to get there and we are still not allowed to walk on the boardwalk right by my place, so I wait. Chris

  • BevJen
    BevJen Member Posts: 2,341
    edited May 2020

    IntoLight,

    You might want to ask your doc about a liquid biopsy to help in choosing a new treatment plan. Gardant is the one that my consulting MO recommended. They only use your blood.

  • intolight
    intolight Member Posts: 2,323
    edited May 2020

    Thanks BevJen. I will do that.

  • JACK5IE
    JACK5IE Member Posts: 654
    edited May 2020

    IntoLight...I am wishing you the best and will keep you in my prayers. I have a question, which you may have already answered. But you said you had multiple small spots in your liver. Were/are you feeling any pain or was this just picked up on the scan?

  • intolight
    intolight Member Posts: 2,323
    edited May 2020

    JACK5IE, thanks for the prayers. I have only occasional and minimal discomfort-type pain in my right side, but mainly it was picked up on the PET scan. I had liver mets de novo but not as many so we have been watching them. They were not active for years but have multiplied and started to grow now. It hurt more when the tech pushed on my liver during the ultrasound of course. Otherwise, my back starts to hurt from the spine tumor when I bend over slightly doing dishes for more than about two minutes, otherwise it is fine.

  • PatgMc
    PatgMc Member Posts: 1,312
    edited May 2020

    Intolight, I've got you right here close to my heart during this anxious time. I also had the circulating tumor test BevJen recommends from Gardant and Ibrance/Fulvestrant was their top choice for my next treatment plan. (I had 3 years of Ibrance/Arimidex and then switched to Lynparza for 3 months.) The discomfort from my sacrum mets has improved a lot in these two months of I/F so I'm encouraged that it's working. Scans in a month should tell me. I'll be praying for incredible peace and confidence in the docs for you, my friend.

    Here's the link to Gardant:

    http://www.guardant360.com

    Love from PatGMc

  • husband11
    husband11 Member Posts: 1,287
    edited May 2020

    Pat, did you experience the progression on Ibrance / arimidex? When did you take the lynparza? So you have been on ibrance / fulvestrant for two months now? Are you still on the lynparza?

  • pnw
    pnw Member Posts: 36
    edited May 2020

    Got my new 21 day supply of Ibrance today in the new format.


    Instead of a small bottle of pills (that's too easy!) I got a shiny branded box full of stuff with illustrations, diagrams, instructions, advertisements, an invoice, and 3 large cardboad books of pill packets with 7 caps per folder. The information sheet folds out to the size of a roadmap with print so tiny my magnifying glass didn't help.


    Excessive packaging anyone?

  • imagine
    imagine Member Posts: 96
    edited May 2020

    I am so relieved... Oncologist appt today and got a good report from Tuesday's ct scan. the multiple pleural-based nodes are stable and some are shrinking and some can't be seen. the right cardioprhenic angle node is 60% smaller. Yeah for Ibrance and Falsodex! The Radiologist said good results for only 5 cycles. Hope I get a good ride on this TX as I'm handling side effects!

  • BlueGirlRedState
    BlueGirlRedState Member Posts: 900
    edited May 2020

    PNW - there ought to be a law about the tiny print. End of June I will also start the tablets. I'm curious what changes were made so that food no longer needed. Reading their literature on capsules, fasting vs food made a huge difference in how well absorbed. I think there were 3 ranges of calories and fat content. The highest calories and fat did the best. If it was one meal vs during the day, it was a lot of calories (1,000). Doubt if it is in the literature, probably need to ask their pharmacist

  • intolight
    intolight Member Posts: 2,323
    edited May 2020

    Imagine, so happy for your good news. Yay!

  • BevJen
    BevJen Member Posts: 2,341
    edited May 2020

    Imagine,

    Great news. Good to hear.

  • karenfizedbo15
    karenfizedbo15 Member Posts: 719
    edited May 2020

    Great news Imagine. Intothelight(Chris) thinking about you too...it’s good when they consider carefully and discuss what’s best, but it always seems to take so looooong before options are laid out.

  • PatgMc
    PatgMc Member Posts: 1,312
    edited May 2020

    Imagine, I'm happy for your news and dancing here in Memphis for you!

    Husband11, I had progression on Ibrance/Arimidex (3 years). We would most likely have made the decision to stick with it since I also had regression at some sites but I had been looking forward to the approval of Lynparza for years. I'm BRCA+ so PARP Inhibitors seemed like the perfect treatment for me. I was wrong but even if it had worked wonderfully, the side effects drastically affected my quality of life. I stopped taking it even before I got the scan results. It made Ibrance fatigue and nausea look like a trip to Disneyworld! Thankfully, that's not true for all who take it.

    I think I took a no-treatment break for about a month because I had growth on the tiny skull spot and needed to have it CyberKnifed. (Successful!) That spot, by the way, never grew while I was on Ibrance.

    The Gardian 360 test results recommended the I/F. I'm on 75 mg at my request (never took over 100 mg) and I continue to get XGeva shots monthly. I've been on I/F/XGeva for two months and a week. I noticed less discomfort after the first month. If it's all in my head, I'm good with that. That's my story and I'm sticking to it!

    I'm sending my best to all of you as we make our way through the pandemic and its aftermath. May you and those you love stay well.

    Love from PatGMc

    Here's my latest piece in the Lockdown Fever Dreams series.

    "Lockdown Love/Sure Winners" (12" x 12" Mixed Media on Canvas) [This one's a love story about a certain 16 year old who's attracted to two brothers during the lockdown. My favorite part is the blue fuzzy dice on her skates indicating that she's a "10"! I put an arrow so no one would miss them!]

    It's funny to think creating such insanity keeps me sane!


    image

  • simone60
    simone60 Member Posts: 952
    edited May 2020

    Great news Imagine!

  • simone60
    simone60 Member Posts: 952
    edited May 2020

    PatgMc, your paintings amaze me. You are so creative. I really like this one.

  • cure-ious
    cure-ious Member Posts: 2,854
    edited May 2020

    really love ths one too, Pat!! and the guys got arrows! everybody on wheels and loudspeakers, very dynamic~ are those frames or boxes in the middle?


  • elenas401
    elenas401 Member Posts: 170
    edited May 2020

    IntoLight: Sounds like you have a good MO. I hope your next treatment has good results. I know what you mean about the stress we're all going through with this virus. It's nice we can support each other in this forum. We need it more than ever. Hope you soon have good news to share.

  • PatgMc
    PatgMc Member Posts: 1,312
    edited May 2020

    Thanks, Simone and Cure-ious, for your kind words.

    Cure-ious, my daughter says one should never explain her art but you asked! In this piece the two brothers both like the girl and the girl likes each of them. She imagines that they get in what we call a "dust ball" (image from cartoons) over her affections. The box is an old carnival piece with a spinner to determine the "Sure Winner" and it represents the fight/dust ball. They all love music, hence the radio and speakers. I usually have birds in my pieces as the observers of human behavior and sometimes they borrow bits and pieces from the humans. One thing I love in this one is the world's tiniest Irish flat cap on the bird standing on the question mark sign and the red bow on the girl bird up high. I'm not even sure you can enlarge enough to see them! I have an obsession with wheels and skates in particular. Thanks for noticing the details.....It makes it fun!

    Love from PatGMcLunatic

    This is a dust ball:

    image

  • cure-ious
    cure-ious Member Posts: 2,854
    edited May 2020

    Yes, Pat!! that's the dynamic component- I always like to ask what is happening, especially because you have very intricate explanations for each part, but keep my own view of what the art says specially to me, and the whimsy, everybody can see what it is they love about it but the more background is so much fun,

  • cure-ious
    cure-ious Member Posts: 2,854
    edited May 2020

    Yes, Pat!! the dustball is the dynamic component- I always like to ask what is happening, especially because you have very intricate explanations for each part, but keep my own view of what the art says specially to me, and the whimsy, everybody can see what it is they love about it but hearing more of the background adds to the fun,

  • cure-ious
    cure-ious Member Posts: 2,854
    edited May 2020

    so tomorrow early I go in for upper eyelid lift! My onc squacked because of being "immunosuppressed" but relented when I said I'll be off Ibrance;` I doubt that she ever had a metastatic patient do this before! well, too bad, ther's a first time for everything- they tell us to treat this like a chronic condition. But how crazy is it the insurance approved eyelift but still hasnt approved a CT scan?!

  • PatgMc
    PatgMc Member Posts: 1,312
    edited May 2020

    Good for you, Cure-ious! And why not?! When you're 100 years old and dying from nothing, you'll look fabulous! My hero!

    I keep halfway planning to go and get some eyebrows tattooed.....Haven't had any since 2012 and have found no decent eyebrow makeup though I've tried everything. The eyebrow stamps were the funniest of all!

    Love and a high five from PatGMc


  • aprilgirl1
    aprilgirl1 Member Posts: 794
    edited May 2020

    Imagine - fantastic news! So happy for you!

    Cure-ious, Awesome! You deserve the eye lift, it is crazy that your insurance won't improve a CT Scan...I have a friend that had an eye lift and she is so happy!(also covered by insurance).

    PatMc - once again, your art is magical. Love all of it, the skaters, the arrows and especially the girl holding a tray of coca-cola.

    PNW - I just finished my first week of the new tablets! I don't really like the packaging but will get used to it.

    Intolight - it would be so hard to wait for treatment changes while we are in quarantine. Not much to do for a distraction. It does sound like you have a smart oncologist, know we are with you in spirit and hoping the next treatment has great results.

  • JACK5IE
    JACK5IE Member Posts: 654
    edited May 2020

    So many people to respond to (which would make a quote option really helpful Happy).

    IntoLight...thanks so much for responding. As far as the pain from the spine met goes, I know how you feel. The 2nd round of radiation I had helped a lot, but I had so much sciatica pain from it that I couldn't bend or stand for too long. It still happens but not nearly as bad.

    Imagine...great news!

    Pat...another beautiful piece of art! And the dust ball, I remember those...so funny!

    Cure-ious...a few years ago before my metastatic diagnosis, I had upper lid surgery for my one eye because it was very droopy/lazy. They had to tweak the other eye as well so they would be even. It was the best thing I did at the time because I was always self conscious of it since I was a kid and it had gotten so much worse with age. The recovery is not very pleasant but worth it. Now however, with age my eyes seem to have gotten smaller. Ahhh to be young and cancer free again.

    I still seem to be the only one that notices a funky smell/taste on the new pills. Finishing out my first 21 days on Sunday. I have two pretty painful sores on the roof of my mouth that I haven't gotten for a long time, so I don't know if the pills have something to do with it. Guess I'll see if it happens again next month.

    Love and hugs to all.

  • simone60
    simone60 Member Posts: 952
    edited May 2020

    Good for you cure-ious! My husband had that done a few months ago. It took years off. I always told my self I am going to get a neck lift when I make the 5 year mark.

  • sondraf
    sondraf Member Posts: 1,666
    edited May 2020

    Ugh - I pulled a .9 today on neutrophils and now have to travel in almost an hour each way to redo bloods next Thursday. They did release the next cycle of drugs (capsules again!) but I have to wait a week until Im cleared to start.

    To be honest my stomach has felt rough the last two days, my diet was not the best his month, and I have not been sleeping well, so maybe I picked something up somewhere. I felt great all month until like Tuesday this week.

  • dodgersgirl
    dodgersgirl Member Posts: 1,902
    edited May 2020

    Jack5ie—. Are you taking 100 MG Ibrance, I don’t remember???

    That’s what I have in the new tablet for. I have 4 more tablets to take this cycle, so not far behind you. Still don’t notice a taste or smell. On pill # 14, I developed a pretty good sized mouth sore on my cheek followed by a few smaller sores on the roof of my mouth.

  • dodgersgirl
    dodgersgirl Member Posts: 1,902
    edited May 2020

    SondraF— so sorry for the .9 and extra blood test coming.

    Hope your tummy issues resolve quickly.

    I had trouble sleeping during my last cycle of 125. So far on 100 mg, I have slept pretty well.