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Ibrance (Palbociclib)

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Comments

  • Northtexas
    Northtexas Member Posts: 29
    edited May 2015

    JFL, no I didn't have to appeal.  My Dr explained that somehow the 2 drugs were approved separately somehow.  Its a really new combination of drugs.  Sounds like the administrative people at your Dr office didn't do a very good job for you.  Can't they resubmit with corrections made?  I'm hoping you can get it approved soon!

  • ChristineR66
    ChristineR66 Member Posts: 7
    edited May 2015

    Thanks for the great tips ladies. Dumb question Pearlady...how do I make the thread my favorite so I can get notifications? I keep forgetting and then come back here weeks later and it's like DOH!! LOL.

    I had a blood draw only after being on Ibrance/Femara for two weeks and of course my TMs went up! So annoying. I too have not had much luck with treatments and had low TMs for maybe 6 mos.

    I still have rib pain so I'm discouraged. I'm on the one week off right now and go back to Onc on Tuesday. At least the TM test appear to work for me.

    Hugs to all

    Chris

  • JFL
    JFL Member Posts: 1,373
    edited May 2015

    Thanks for the info, Sandilee and NorthTexas. They can resubmit the appeal. I spoke to my employer and it will go to an independent third party decision maker. The decision will be final so no mistakes allowed. I am drafting the letter myself this weekend for my doctor. My DH is a doctor and used to review appeals through work. He will review it after I draft it. If it is going to be denied, I want it to be because it is not FDA approved, not because of factual errors

  • sandilee
    sandilee Member Posts: 436
    edited May 2015

    Good luck, JFL!

  • Redroan
    Redroan Member Posts: 111
    edited May 2015

    Hello, My ONC just called, Tumor markers are up 50 points. Only finished my second round of ibrance, We were gonna wait until the middle of June to do Ct but now it is gonna happen next week. I was really hoping this was the one that was gonna work. Who knows whats next. Really disappointed.

    Redroan

  • Myra1211
    Myra1211 Member Posts: 532
    edited May 2015

    so sorry Redroan and Chris. Could it be flares? One of my TMs went up and one went down. Hopefully mid June they will both go down. Myra

  • pearlady
    pearlady Member Posts: 390
    edited May 2015

    Chris and Redron so sorry your TMS went up. Can you perhaps stay on Ibrance with something ibe instead of Femara? But i think only two weeks is not indicative. My markers went up slightly after my first cycle and then came back down. My onc has said that he would try it with something else if we didn't get the results he wanted but I'll take stable. Just had my TMs checked today so we'll see. I feel as if i'm living from one blood draw to the next.

    Chris you just need to make this one of your favorite topics by clicking on the link at the beginning of the thread.

    Chris I see that you are Her2n+ also. I'm curious if you are still on herceptin and if you've had Perjeta. I am still on herceptin with the Ibrance. Most of the women on Ibrance are not Her2nu+. My onc was surprised that my insurance approved it.

    Praying for all of us. Enjoy the holiday weekend.





  • mmccall
    mmccall Member Posts: 5
    edited May 2015

    Hi Folks,

    New to this thread and hoping for some insight on Ibrance as my Onc has ordered for bone and now liver mets. In reading the post most of you seem excited about this option but are concerned with managing the side effects. I am finding my self in a quandary lately with cancer treatment as a whole, and have to wonder if the risks with these drugs are starting to outweigh the benefits. I recently read one in three people have cancer of some form. That statistic really resonated with me . I must say honestly, I'm not sure I have much confidence in the FDA as I also have a list of 27 carcinogens they have approved for use in consumer products. So much of conventional treatment is driven by pharmaceuticals. As I was waiting for my scan results, a drug rep came into see my Oncologist to discuss clinical trials being close to publishing, Sometimes I just think there has to be a better way to care for us. Hope I didn't offend anyone I am just really concerned and confused on many levels.


















  • sandilee
    sandilee Member Posts: 436
    edited May 2015

    Redroan,

    I'm sorry to hear your doc feels Ibrance isn't working for you. Did he say what you might try next? Best wishes, and let us know how the CT goes and what you decide.

    Hi mccall,

    For me, the risks of Ibrance are pretty minimal. Mostly, the risk is that my counts won't come up fast enough for me to take it. I feel well on the medications, but when your neurtrophils drop as they do on Ibrance, you don't really feel and differently and wouldn't even know there was a problem if not for the blood work. That's why they do them before each new cycle, but each doc is different with what levels they are comfortable with. I also think it probably depends on the doctor's evaluation of the risk of infection for a given individual, too.

    Anyway, good luck to you if you start this one. So far, few on the board have been on it long enough to see any results, since it's so new. We're all sort of test subjects, I think. The biggest problem I see (other than the fact we don't even know if it's working yet) is that we have to have frequent blood draws and wait periods to keep it going. Other than that, it's not hard.

    I understand your frustrations, though. It does seem like there should be something, after all these years, to cure this beast. Meds giving us a few more months, or even a couple more years, just don't cut it.

    Best wishes.

  • VivianS
    VivianS Member Posts: 43
    edited May 2015

    Thanks Romansma, I am taking your exact advice and will be starting Ibrance/Femara next week.

    I can't agree more that we need a voice - and a different approach to actually finding a cure. I know a real cure is linked into our own immune systems. And you are right that it is hard to get excited about these drugs as a kind of "magic bullet", like Dorothy clicking her ruby slippers. We are far from home.

  • ChristineR66
    ChristineR66 Member Posts: 7
    edited May 2015

    Hi Pearlady! Thanks for the kind words. I agree two weeks might be soon. I will know more next week. Originally my diagnosis was Her2-, then after my mastectomy it was Her2+ and now that it's mets to my bones it appears to be Her2- again. 😓. We also tried Herceptin/Perjeta but it wasn't working. Sigh..

  • ChristineR66
    ChristineR66 Member Posts: 7
    edited May 2015

    Romansma, how are you doing? How long have you been on the new meds and have they started working for you?


  • Romansma
    Romansma Member Posts: 650
    edited May 2015

    Best of luck to you Vivian, really hope Ibrance is the magic you need!

    Redroan and Chris, really sorry about your markers. Shoot, you both just started. Hormonal treatments, like this combo, take some time to work. I really hope the scan shows a different pic and you get some time to allow this combo to do its thing.

    Good luck with the appeal JFL. Is anyone here taking Ibrance with Faslodex off trial? Anyone get their insurance to cover it? I didn't think it was FDA approved, therefor, insurance would deny. Hope I'm wrong.



  • Redroan
    Redroan Member Posts: 111
    edited May 2015

    Thanks for the well wishes, I am trying to be positive and I do respect my onc for being cautious, We have not discussed what is next yet, He is waiting for the ct I know. And I guess I will just try to stay positive and think the best . Maybe it is just because the ibrance is working that markers went up.

    Best of luck to you all, Stay Strong,

    Redroan

  • ShetlandPony
    ShetlandPony Member Posts: 3,063
    edited May 2015

    Quick update: I have completed two cycles of Ibrance+letrozole (having started after a PET-CT that amazingly showed NEAD following taxol for liver). Had a PET-CT today, and it remains NEAD. Tumor markers holding steady in normal range. Blood counts causing no delays so far. But I have a heck of a mouth sore that has lasted over a week.

    You go, JFL!

    Good wishes to all.

  • pearlady
    pearlady Member Posts: 390
    edited May 2015

    Chris sorry that the herceptin and Perjeta didn't work for you. I was her2nu+ when I was first diagnosed. When my bone Mets were biopsied in 2011 it showed as negative but the ER/PR was still positive . My onc told me that Her2nu doesn't always show in bone mets and that he was sure I was still positive. The Perjeta and herceptin that I had subsequent to the biopsy did work but yet Kadcyla did not. So who knows. Just hoping that the Ibrance/Femara works for all four us. My onc keeps telling me to be patient that this combo could take a while to work.

  • kaydeesmiles
    kaydeesmiles Member Posts: 201
    edited May 2015

    Hello everyone,

    Popping in to add some data. After Round 2 of Ibrance I got another slight drop. Only about 10 points but I'll take it and be grateful. I really do believe that an Ibrance and Faslodex or Tamoxifen combo might be more effective for me, so I'm eagerly awaiting more results from those trials and hopefully FDA will approve soon.

    My numbers are still in the tank and I can definitely feel more fatigue after this round compared to the first. but thank goodness still no fevers. We're pushing on and I'll start Round 3 next week.

  • sandilee
    sandilee Member Posts: 436
    edited May 2015

    That's great, kaydeesmiles! Any drop in tumor markers is to be celebrated. Can I ask what your ANC is hovering around? Has it gone down from one cycle to the next, or held steady? Thanks.

    I'm not-so-patiently waiting to start my second cycle on the lowered dose. I'd be very happy with any drop in tumor markers, even 10 pts.

  • RosesToeses
    RosesToeses Member Posts: 244
    edited May 2015

    So sorry to hear about the markers going up and, JFL, about the initial insurance denial--hopefully the appeal with more info will be all it takes.

    I found out last week that my tumor markers went up, too. But since it wasn't even a full cycle when they were drawn, my onc says it's too early to be concerned. I really wish I could get God to just hold up a sign or something to let me know what's going to happen, it's kind of stressful waiting and wondering how this is going to go.

    Oh, and kaydeesmiles, great news about your markers dropping! Wishing us all more good news to come!

  • kaydeesmiles
    kaydeesmiles Member Posts: 201
    edited May 2015

    Thank you Roses, I'm really hoping I can keep pushing the TM down.

    sandilee, My ANC dropped to a dismal 0.6 after the first round and is hovering there. Hopefully round 3 won't push it any lower. And yes, yes any drop is a good drop!!! I know tumor markers are not always reliable in all people, but they've been a pretty good indicator for me.

    Rooting for you and wishing you a successful second round.

  • Northtexas
    Northtexas Member Posts: 29
    edited May 2015

    Romansma, I just started on Ibrance/Faslodex combo.  Not in a study.  I told Dr that is what I wanted and she somehow got it approved for me.

  • sandilee
    sandilee Member Posts: 436
    edited May 2015

    Thanks, kaydeesmiles. Did your doctor have any problems letting you start your second round with 0.6? Any words of wisdom or tips for avoiding infection?

  • kaydeesmiles
    kaydeesmiles Member Posts: 201
    edited May 2015

    sandilee, he didn't have any problem with letting me start the second or third rounds. But he did tell me to call him immediately if I even thought I was getting sick.

    I am worried about the neutropenia though and I've cut air travel significantly. And when I do fly.... that quirky lady wearing the white gloves? Yeah, that would be me. I'm super careful about surfaces like door handles, atms and elevator buttons. I do avoid large festivals/crowds. Maybe I'm being overly cautious, but I do want to stay on this drug if it's possible it could work for me. I don't want to get sick and be snatched off of it.


  • sandilee
    sandilee Member Posts: 436
    edited May 2015

    No, I don't think you're being too cautious. I'm the one who recommended the white gloves, and I use them, too.

    So glad to hear that the drug seems to be working for you. We need some positive news! Stay well!

  • JFL
    JFL Member Posts: 1,373
    edited May 2015

    Those of you with increased tumor markers, just wanted to say I am thinking about you. Part of what makes this dx so difficult is the unknown status. It is hard to mentally prepare or know what to do when one doesn't know exactly what is going on.

    Also thinking of those of you with tanking or troubling counts. Hang in there.

    I was looking at the ASCO agenda for next week's meeting (May 29 - June 2). There will be many trial reports on Ibrance - with Femara, Faslodex and Tamoxifen, including results from various subsets of people - premenopausal, over 65, etc. Not sure how far along the various trials are (other than the Faslodex one, PALOMA-3) but I hope the updates continue to show promise with this drug. I am going to wait to file my Ibrance appeal until after the details of PALOMA-3 are announced at ASCO on June 1. It should bolster support for my appeal since the April announcement about Faslodex/Ibrance success didn't include any details other than that the Phase 3 trial was stopped early because it met its primary endpoint on progression-free survival. Also, Pfizer is holding a conference call with analysts and the public on June 2 to discuss ASCO presentations and oncology breakthroughs. I plan to listen to that as well

  • sandilee
    sandilee Member Posts: 436
    edited May 2015

    That's very interesting, JFL. Do you know if this conference call on June 2 be available online? How do you plan to listen to it? I like your plan. I think that having those trial results could make a big difference in getting your approval.

    Thanks also for your encouragement to the rest of us. I'm getting very antsy about sitting here waiting for my counts to rise (and formulating a case to my doc about why I shouldn't have to wait). It's frustrating to see women successfully continuing the drug with lower counts than mine when my onc, as much as I respect him, is making me wait because he doesn't believe it's worth the risk in my case. I'm willing to take that risk so I can see if I'll have results.

    We are all so different, at different stages of health, age and cancer progression, so I have to remember that what's good for one may not be good for all. But still, it's hard.

    I'm really rooting for you, JFL, and thanks for the info and for keeping us posted on your situation.

  • VivianS
    VivianS Member Posts: 43
    edited May 2015

    JDK, I was just about to send a post with the exact same questions that sandilee asked! How are you able to listen to the conference? Are you going to view write-ups or summaries, etc? My onc seems to thinks that the results discussed in the ASCO conference may help us in getting the Falsodex/Ibrance vs. Femara/Ibrance approved.

    Sandilee, the article you posted was very good and really got me thinking, thinking, thinking, and researching more! I was on Medrol for another medical prob. I have and when on a corticosteriod my neutrophils went way up. Now I understand why and the connection between my "bad immune system" and cancer growth. There is so much to learn.

  • JFL
    JFL Member Posts: 1,373
    edited May 2015

    Sandilee and Vivian, below is the info about the Pfizer conference call, as well as a link to Pfizer's website where the info is posted. You can listen by phone and can also follow the slides they present on their website. This is a securities law requirement for Pfizer as a publicly traded company to disclose material news to shareholders. This call will discuss all their cancer drugs, not just breast cancer or Ibrance. However, since Ibrance is one of the key money makers they are betting on for the near future, I suspect it will be one of the highlights of the call. There will also be time spent talking about the financial impact of the drugs in the pipeline on Pfizer's revenue and earnings (which is what the analysts who follow the stock want to know), which may not be of interest to everyone and could be overly technical. I plan to have the call playing in the background and will then tune in when Ibrance or other breast cancer drugs are discussed.

    http://www.pfizer.com/news/press-release/press-rel...

    Pfizer Invites Public to View and Listen to Webcast of June 2 Conference Call with Analysts to Review Oncology Business and ASCO Data Presentations

    Tuesday, May 19, 2015 - 10:00amEDT

    Pfizer Inc. invites investors and the general public to view and listen to a webcast of a conference call with investment analysts on Tuesday, June 2, 2015 at 4:30 p.m. EDT. The purpose of the call is to provide an update on Pfizer's oncology business and to review Pfizer's ASCO data presentations.

    To view and listen to the webcast, visit our web site at www.pfizer.com and click on the "Pfizer Analyst and Investor Call to Review Oncology Business and ASCO Data Presentations" link in the For Investors section located on the lower right-hand corner of that page. Information on accessing and pre-registering for the webcast will be available at www.pfizer.com beginning today.

    You can also listen to the conference call by dialing either (844) 246-7558 in the United States and Canada or (303) 835-4213 outside of the United States and Canada. The password is "ASCO".

    Visitors to www.pfizer.com will be able to view and listen to an archived copy of the webcast of the conference call.



  • VivianS
    VivianS Member Posts: 43
    edited May 2015

    Thanks JFL! I will be 'a listenin' !

    Btw, I did not qualify for the Lilly/Falsodex study after all my angst, and the Case Manager Nurse did not know why because she "lost the email". Agggggh! It may just be job for her, but it is a life to me. I can find out from the doc, but still I want to know. After talking with you guys and doing alot of thinking I had decided the study was not for me, but that is not the point.

    Anyway, the Ibrance is available for me to pickup Tues (a 2 hr drive away]. $80/month with my ins. and $98,600 is no insurance (thank G`d)!. Why so much?

    Take care to all you wonderful women out there!

  • sandilee
    sandilee Member Posts: 436
    edited May 2015

    Vivian, I'm glad you'll be able to start the Ibrance. Are you sure that's not 9,860.00? I think my information stated it was between 9 and 10 thousand a month. (I'm not paying that, fortunately.)

    Vivian, don't forget to go to Pfizer's website and see if you can get their $10 per month co-pay card. It would save you $70 a month! And are you sure there is no way that the specialty pharmacy can mail your drug to your home?

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