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Ibrance (Palbociclib)

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Comments

  • gailmary
    gailmary Member Posts: 523
    edited June 2019

    GUMDOCTOR I'm with Lauren thinking maybe you could use an antihormonal again later. I thought they figured a way around that now at least for some types. Sure is complex. Did dr say anything about this?

  • ruthie3
    ruthie3 Member Posts: 11
    edited June 2019

    Hi all. Can anyone help me w/ this? I've been on Ibrance + Faslodex for 2 yrs. and doing great. Problem is I've developed scar tissue where I get my shots, and can hardly walk. Can anyone help me w/ this or had the same problem? Thanks

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

    Ruthie, I'm posting a good article concerning Faslodex injections. It's interesting that only 32% of the injections are given in the proper site if I remember that correctly. You might want to take this info to your doctor to pass on to the nurses. The rest of you might want to learn whether your shots are being done properly.

    https://voice.ons.org/conferences/best-practices-f...

    I'm so sorry you're having to suffer. I believe I read someplace that there will one day be an oral version of this drug. It can't come soon enough, huh? Yep, here we go:

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC54997...


    http://clincancerres.aacrjournals.org/content/clin...


    Love from PatGMc who will be praying for your bottom and all the other bottoms here

  • daingram
    daingram Member Posts: 4
    edited June 2019

    BevJen,

    I am just starting this journey with both drugs. Go to the Ibrance web site and call them....they might be able to assist $$$ and perhaps cover 100% even with Medicare!!!! I just filled out my portion of the application and my Onc is filling out his portion. If I qualify they do not even run it through Medicare was my understanding which could be huge!!!

    I also spoke with AstraZeneca about help with copays for Foslodex injections $400 for me. There are grants and non profits that could also help with those costs. My Oncologist office has a department that just does searches and fills out applications for assistance. They called me back yesterday and said they found a grant that I qualify for! Not sure how much but any help is a blessing. I hope this helps. First round with cancer 8 years ago was a $20,000 out of pocket. Trying to more proactive this time around...

    Debbie

  • daingram
    daingram Member Posts: 4
    edited June 2019

    So sorry you are having this problem. After my mastectomy I went to a Myofacial Release Therapist. And she was able to release some of the scar tissue to relieve both my pain and swelling I was experiencing. This is not a massage.... And of course insurance does not pay for this type of therapist and not all PT's are familiar.


  • BevJen
    BevJen Member Posts: 2,341
    edited June 2019

    Debbie,

    Interesting info on Ibrance costs (and Faslodex). I am now getting my care through Hopkins, and from what I understand, they have a pretty robust patient benefits department to check on any possible programs for reducing costs with Ibrance. I am hopeful that they will be able to guide me through the costs -- I've already talked once with the patients benefits people.

    Thanks for posting the info!

    Bev

  • ruthie3
    ruthie3 Member Posts: 11
    edited June 2019

    Thank u Pat for all the info. Wondering if Cortisone shot would help,wish they was another drug I could go on with Ibrance I want to stop these injections.









  • ruthie3
    ruthie3 Member Posts: 11
    edited June 2019

    Thanks also to u diagram....I will certainly look into this..

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

    Ruthie, can I assume you can't take an AI like Letrozole or one of the other two? Have you already taken one of those? What about Tamoxifen? I seem to remember reading somewhere that Faslodex and Tamoxifen act similarly. Is that crazy?

  • LoveFromPhilly
    LoveFromPhilly Member Posts: 1,019
    edited June 2019
    fightingirl and laurenH - Thanks for your responses about the sore throat issue. It does seem better today thank goodness! And Lauren - I was totally thinking about you and your end of cycle URIs that you told us about. Is this still happening each cycle for you? I called my MO about it (I’m a super compliant patient and tell them EVERY single side effect I have! 😂) anyway - they said that it is unfortunately normal and that it is most likely due to the Ibrance irritating the mucosal lining of the GI tract and is currently landing in my upper throat area right now. So basic mucositis happening back there. She said to let them know if it gets more painful, then we will address it with something stronger but for now when it happens to swish with the magic mouthwash.

    Lauren - that was the sweetest story about your adoption and also the heartbreaking part of when our fertility gets taken away from us and we no longer even have the option!!! But Wow!! What a gorgeous kid!!! Soooo adorable!!! I am a firm believer in adoption and foster care - I am amazed you have the energy to raise a son and work full time (at your very busy job!) and still stay upright each day. I think I’ve entered much more of a slow pace and it is hard for me to imagine faster. But you inspire me!!! I feel like there’s so much I want to do still and I want to not let this MBC get in the way!!

    My therapist thinks I need to just chill 😂 as do my friends and family. I think when I give something my all, I really go bananas.

    Hope everyone is feeling okay today!!

    Hugs and love 💕 Philly
  • maureenb
    maureenb Member Posts: 47
    edited June 2019

    Has anyone ever been given Ibrance for early stage disease? I have a recurrence and just saw an email from my onc to my surgeon saying i was supposed to be starting ibrance and femera after surgery. he hasn't told me the results of my pet scan yet. does ibrance mean i am stage 4?

    so scared

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

    diagram, my oncologist referred me to a licensed physical therapist who does myofacial release and it was 100% covered. I was approved for 13 sessions and was about to renew for 13 more when the discomfort completely resolved. It was amazing how much discomfort she conquered which I had assumed was cancer pain. That's a great idea for someone with pain and/or knots from shots!

    ruthie, have you taken an AI before? Why not try that since it accomplishes essentially the same thing alongside Ibrance? If you're reluctant to confront your doctor about making the change, remember that your quality of life means everything. Make as much noise as you would for any child you love.

    Love from PatGMc

    Sorry, just read Jaycee's earlier post about AI. Good advice!


  • Gumdoctor
    Gumdoctor Member Posts: 618
    edited June 2019

    PatgMc,

    I did my own version of what you suggested...look in the mirror and say let's kill some cancer cells today...kind of a cute story...

    But I did it at the clinic Wednesday when they took me back for bloodraw prior to meeting with Dr Angel to discuss my immediate fate. I was all hyped up because of the liver news 2 days before...and from reading your post earlier that morning or the night before when I couldn't sleep...

    I am not generally very outgoing with strangers...pretty introverted actually...but when I do patient safety training and presentations, I pull out my alter ego personality and just plain GO FOR IT to get people all fired up...

    They called me and a guy, I have never seen before, back to the lab for bloodwork at the same time. I had 2 days for the progression news to settle in and here I am faced, with the first step in this liver progression alternate universe I now find myself in...

    I asked him how his day was going...he looked at me a little funny but said, "Ok and yours?"...my alter ego personality belted out, " Woo Hoo!!!!!! We are gonna KILL some CANCER CELLS TODAY!!!!". And then this stranger and I high-fived!!!!

    The nurses around us heard this and were all laughing and tickled and it was all a great little moment to start off my new journey.

    I truly have you to thank for that moment in my life and in those others who got included. They were all positively influenced and it helped to calm me down. I am frankly scared beyond all description with what is happening inside my body right now. Great moments like these help me to not feel so scared and so totally helpless.

    Much love to you, Gumdoctor

  • anna-33
    anna-33 Member Posts: 108
    edited June 2019

    maureen...

    I have some lesions which lie «hard to reach» so they can not take biopsi. So stage 3, but told may be 4... But now two years out in this «game»..... I get Ibrance. That is why i follow this forum... and the PALLAS trial forum.

  • Gumdoctor
    Gumdoctor Member Posts: 618
    edited June 2019

    Piggy - Thank you for your support. Dr Angel says too soon for a trial but she will be starting to think about it as we move forward. I am not in a hurry to start in a trial unless it is where I normally go. Logistics too difficult with travelling and husband...long story...

    Gumdoctor

  • Gumdoctor
    Gumdoctor Member Posts: 618
    edited June 2019

    Piggy - Thank you for your support. Dr Angel says too soon for a trial but she will be starting to think about it as we move forward. I am not in a hurry to start in a trial unless it is where I normally go. Logistics too difficult with travelling and husband...long story...

    Gumdoctor

  • Gumdoctor
    Gumdoctor Member Posts: 618
    edited June 2019

    Lauren - Your beautiful son is an amazingly fortunate little boy to have a mom and parents that want him so much. Congratulations on that decision that turned out so well for all. It may also be one of the reasons you have done so well with your MBC tx.

    Gumdoctor

  • Gumdoctor
    Gumdoctor Member Posts: 618
    edited June 2019

    Lauren - Thank you for thinking of me and bringing up great points on my behalf. MO said even if new lesion tested ER+, it is obviously not sensitive to estrogen now so this represents some kind of mutation and we have to change up tx.

    After some Xeloda tx, and seeing how it responds, we can maybe re-visit biopsy and possible localized tx in the way of surgery or radiation.

    I thought the same you did and asked her ALL these questions. She is very open to finding out more but wants to attack the new liver met hard and then investigate further. I am as comfortable with this plan as I could be with any plan right now. I am actually so scared that this is the beginning of the end, I can barely think straight or sleep. As many have said in this thread, having a plan makes it easier to move through one day at a time. I have been floating since my Monday liver news like a leaking helium balloon flitting through the air...no direction...just wildly moving to and fro...hoping to land on solid ground somewhere...anywhere...Now that we have a short-term plan, at least I can try to catch my breath and calm down and focus on that plan.

    I pick up Xeloda tomorrow and start it on Saturday morning...

    Gumdoctor

  • karenfizedbo15
    karenfizedbo15 Member Posts: 719
    edited June 2019

    Thank you all so much for the positive comments on my NED scans. I promise to shout in future as everyone had suggested - if I have reason to. Agree I also enjoy hearing others good news, but do feel guilty if mine is in amongst other’s tough times. Hang in there to all of us I think

  • Gumdoctor
    Gumdoctor Member Posts: 618
    edited June 2019

    Karen - Feeling guilty steals some of your joy and positive energy. Send that guilt packing!!!

    Gumdoctor

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

    Gumdoctor, you've got me grinning in Memphis! See how contagious you are?! I bet your new friend passes that on (and maybe says a little prayer for your sanity). I love it!

    I used to go to American Therapeutic Humor Association conventions and I learned one particularly cool thing from a scientist there. When you laugh you release Natural Killer Cells and the job of NKCs is to swoop in and surround cancer cells. You probably did yourself and your friend as much good as a daily dose of high dollar whatever....and at a bargain price.

    I think your liver is smiling and healing as we speak! Keep doing that wonderful routine with others, Gumdoctor. You completely altered a moment and moments are really all we have. We think we have days and weeks and months but we don't....just the moments. Crowd enough happy, silly times together and you've got yourself some real time....good time.

    I hope everyone here will make it your business to bring a little joy into those sad clinics. Did you know you can buy clown noses by the case? (I'll add a link.) Put some in a basket and pass them out in the waiting room, getting everyone to agree to pop them on in the lab, the exam room and the chemo room. I promise, it changes things.

    Love from PatGMcSilly

    https://www.amazon.com/72-Red-Foam-Clown-Noses/dp/...=sr_1_26?crid=2H3J8VPS194GX&keywords=clown+noses+in+bulk&qid=1561680344&s=gateway&sprefix=clown+noses%2Caps%2C155&sr=8-26

  • lissalou
    lissalou Member Posts: 48
    edited June 2019

    Gumdoctor,

    Sending you gentle hugs, calming thoughts and hope that this new treatment is a long lasting, gentle treatment. We are all here pulling for you.

    Melissa

  • gailmary
    gailmary Member Posts: 523
    edited June 2019

    Gum doctor,

    Dont give up yet! You know others have survived brain tumors several yrs after treatment. My friend just had her liver tumors obliterated with radiation beads. Maybe its time for a second opinion. Or at least ask why she is not suggesting that for you.

    Gayle


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

    Gumdoctor, regarding "the beginning of the end":

    Twenty-five years ago, when I was first diagnosed with Stage II BC I thought it was the beginning of the end. My mother had been diagnosed with melanoma and they told her she had two months to live. She did what I never thought my totally in charge and strong willed mother would do. She believed them and waited to die. She exactly met their deadline. It's just so sad to think about. (We did have a funny moment during those months that I'll share with you sometime.) Anyway, I didn't know anybody else who had had cancer so I started out expecting to die young.....like, really, really soon.

    As time went by (and I didn't die) and we started the Flying Colors Center, I met one person after another who thought they were at the beginning of the end.

    Most weren't.

    I just want your liver to hear about one of them.

    She was a delightful artist named Colleen Newport Stevens (google her) and she popped into the center right after a doctor told her she had liver mets. I got to introduce her to some long time survivors, she listened to their stories and started to perk up. She ended up coming to work there.

    Colleen was five years out when the liver and bone mets showed up. "The beginning of the end" only happened a week or so before she died EIGHT YEARS later! That still seems like a short survival time but remember, that was an eternity ago when there wasn't much to offer someone with MBC. Heck, they hadn't even named it MBC yet!

    Okay, one more person for you to meet - Julie. She and Colleen became friends over their shared liver/bone maladies, only Julie had 14......count 'em, 14!.....tumors on her liver and a ladder of them up her spine. Julie was also pregnant when she had the recurrence and took Adriamyacin during her last trimester. Colleen brought a rocking chair to Flying Colors and we took turns rocking Baby Alis. The story is long and very happy. Julie posted pictures a few months ago of Alis during her Senior Ring Ceremony at the University of Texas. See......long and happy. Julie has had many hiccups along the way and is at MD Anderson this week seeking yet another treatment. She has also run marathons and more Race for the Cure events than you can count. But she continues to outrun "the beginning of the end".

    We live in a time when our disease has its very own name and researchers are leap-frogging each other trying to come up with the next $11,000 a month treatment that will become the standard of care and make their companies rich. My oncologist says he can't even try to keep up with every new treatment for cancer that gets approved; he just has to research according to each patient's needs. He used to be a researcher and said he remembers when a year or two went by without a new drug but not any more!

    Gumdoctor, I think you and your liver will live to see another treatment and another and another until one of these researchers is going to hit the jackpot. When that happens we're going to call a meeting of all our friends on this thread and Julie can be our speaker! Grannax can bring her squeaky clean liver over to join yours for a fashion show! Hey, we'll have a whole liver section and the bone mets sisters can do a kick line!

    God has it all in His hands. All of you, today is the beginning of your beginning.

    Love from PatGMc


  • ciaci
    ciaci Member Posts: 315
    edited June 2019

    maureenb, I don't have a definitive answer, just wanted to let you know I read your question, and am thinking good thoughts for you! I do know there were trials with Ibrance in early stage BC, and I thought some on this forum had been using it like that (though I may be thinking of somewhere else).

    I hope whoever has actual info for you, reads this, and hops on to answer your questions soon. But Im pretty sure that an Rx for Ibrance isn't automatically Stage 4.

    Either way, we're here for you! So much info here to get you through... and wonderful, supportive people!!

  • candy-678
    candy-678 Member Posts: 4,171
    edited June 2019

    Gumdoctor--- Routing for ya. A plan is good. I like a plan. I will have to remember "WE ARE GOING TO KILL SOME CANCER CELLS TODAY". That is a good one.

    Philly and Gumdoctor---- Sounds like your MO's are easy to talk to and there for you. You are fortunate. I have been having some problems lately. Won't go into the whole story now. If you want to see my posts on the BC and Autoimmune Issues Thread you can read them. Just kind of discouraged with my MO right now.

    Maureenb---- I think I have read some oncs starting to use Ibrance for early stage. But I am not sure. May have misread. Hang in there. And post updates when you know the PET results. We are there for you.

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

    Sorry to be such a know-it-all today:

    Here's one report on Ibrance for early stage BC. I know we've posted some more recent ones here but I don't know how to find them and my chemo-brain is not up to doing research.

    https://www.aacr.org/Newsroom/Pages/News-Release-D...


    Love from PatGMc

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

    Lauren, your boy and your story own my heart today. I love you both.

    PatGMc

  • Gumdoctor
    Gumdoctor Member Posts: 618
    edited June 2019

    Gailmary - I have been reading and learning about my new alternate liver mets universe...from what I have read so far, Y90 is for situations with multiple liver lesions. Right now, I have one big fat lesion in liver segment 5 (reminds me of "my big fat greek wedding"...).

    MO is interested in exploring localized tx (surgery or radiation), after she sees what the response to Xeloda is.

    Gumdoctor

  • BevJen
    BevJen Member Posts: 2,341
    edited June 2019

    Gumdoctor,

    I am having a microwave ablation next Friday of a 2 cm liver lesion. My MO also initially wanted to have me pursue systemic treatment first, and that's a valid approach. I just didn't choose it -- I have started on faslodex, and am holding off on Ibrance until I've healed a bit from the ablation (because of the potential for lowered white blood counts.)

    What I would start doing, if you are so inclined, is to investigate what types of local treatment options you might have in a month, two months, etc. As far as I have found out, there are a variety of approaches that interventional radiologists and/or surgeons can employ, especially in your situation. I'd suggest reaching out to IR docs whose names you may find on articles in Pub Med talking about the use of IR techniques in breast cancer. I found that there is a lot of information out there and it really takes some time to go through it and try and understand it. Further, I'd get copies of any scans that you have just had as well as any you may have in the next few months. I did have to send my scans to a few docs who I asked for their opinion, so that would be helpful to collect.

    Like you, I was gobsmacked with a diagnosis of liver mets. Investigating what could be done, and putting together my reports and scans and contacting some docs all around the country for an opinion, at least gave me the feeling that I was doing something to fight back. Good luck.

    Bev

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