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Ibrance (Palbociclib)

1100101103105106945

Comments

  • Lynnwood1960
    Lynnwood1960 Member Posts: 1,107
    edited January 2016

    Moissy, I get my tumor markers checked every 4 weeks. How about you? I'm also curious to see what Deannas doctor has to say! The more information the better! My onc makes me see her every 4 weeks, says this med is so new that she likes to keep a very close eye on her patients that are on it.

  • moissy
    moissy Member Posts: 371
    edited January 2016

    Lynnwood - I also get markers tested monthly after each cycle. I've been fortunate to have a good response so far also. Markers still going down quite a bit, but it was a much smaller percentage drop this past time. Really happy that your markers are so close to normal now!

  • Zillsnot4me
    Zillsnot4me Member Posts: 2,122
    edited January 2016

    Hello all. I've read the thread off/on as my MO had said it would be the next step when I had progression to bones last year. Scan today show bones haven't responded as well as expected to xgeva and arimidex and new spots in liver. Starting Ibrance and Femera as soon as they can get the paperwork processed.

    Anything I need to know ahead of time?

    Thanks.

  • jobur
    jobur Member Posts: 494
    edited January 2016

    Monika, Thinking of you today and sending those good scan vibes your way! Hope you don't have to wait too long for results. Sounds like your scanxiety was low, it would be nice to keep it that way.

    Hi Zills and welcome to Ibranceland. Sorry you have had progression. Many find it a pretty easy tx, hope you do too and get good results.

  • mountain-gal
    mountain-gal Member Posts: 4
    edited January 2016

    Susan, I am so sorry you had this reaction. I, too, was hit with SE like a cannon. It was very discouraging, but not all women react the same way. I am glad this drug is available as I was looking for it to be my next line of defense.

    I was on Xeloda for almost 10 months and I was able to adjust dosage and cycles to make it last that long.

    Has your doctor talked to you about clinical trials? After Xeloda and my failure on Ibrance, I will ( if my liver counts return to normal from 2 weeks on Ibrance) be on a trial for the oral version of Faslodex. It might be available in your area.

    Wishing you the very best as we suit up in our armor every day to fight this beast of MBC. Its a beautiful day - don't let it get away.

  • artistatheart
    artistatheart Member Posts: 1,437
    edited January 2016

    Mountain gal, Do you and your Onc think the Ibrance caused the elevated liver enzymes? I also had way elevated and we tried stopping the Ibrance only for a week then My Onc decided it was the letrozole so pulled me off of that and put me back on Ibrance.....Now I am on Faslodex/Ibrance but wonder if my enzymes are still elevated how will she know which med it is this time?????

  • lindatwo
    lindatwo Member Posts: 55
    edited January 2016

    Hi Ladies,

    I am wondering if any of you had a hard time getting approval for Ibrance with Faslodex from your insurance company. I've been on Abraxane since May and had very good results, but am now getting neuropathy in my feet. Ibrance and Faslodex were the next in our line of options, but I received a letter from BC/BS denying coverage. They say "the use of this medication without concurrent use of letrozole does not establish medical necessity for this drug." I have to write a letter to them to have them reconsider, but meanwhile I haven't had any treatment at all for two weeks already. Any suggestions?? I see my oncologist on Thursday.

  • Sarah0915
    Sarah0915 Member Posts: 81
    edited January 2016

    I was on Faslodex and Xgeva and tumor markers started increasing. My BCBS denied Ibrance but then approved it on appeal. They are way wrong on its use with Faslodex instead of Letrozole. The pharmacist at my oncology clinic and/or my doctor wrote the appeal, faxed it, and it was approved the next day. The other approach you may take is find out what specialty pharmacy you will be getting it from and ask them to help with the appeal. Mine is CVS Caremark and they have been extremely helpful. You may also want to contact a customer service rep at Pfizer. They could possibly help with the appeal and provide data on the use of Faslodex and Ibrance. Good luck. It has reduced my tumor markers by 50% with minimal side effects.

  • dlb823
    dlb823 Member Posts: 2,701
    edited January 2016

    lindatwo, if you can't get it corrected quickly, see if your onc can get Letrozole+Ibrance+Faslodex approved. I know it sounds a bit crazy, but when I initially had trouble convincing my insurance carrier's specialty pharmacy that I only wanted Faslodex w/Ibrance, it was one of their pharmacists who suggested sending me all 3 and then just not taking the Letrozole. We eventually got it straightened out, but it took a few days and quite a few phone calls, and would have been faster if I'd just followed his suggestion and had them send me the Letrozole and just not used it. Just an idea if you don't get it straightend out quickly. Deanna

  • DancingVeggie
    DancingVeggie Member Posts: 47
    edited January 2016

    Can anyone tell me what happens if your liver enzymes are too high? I know from reading that they are a consequence of liver damage, sometimes resulting from a chemo that is working and sometimes from a chemo that isn't working. Can anyone tell me if there are symptoms about which I should be concerned or aware? I am on Cycle 3 of Ibrance/Femara and have seen my enzymes rise and have also felt lumpy and in pain.

  • lindatwo
    lindatwo Member Posts: 55
    edited January 2016

    Sarah, Interesting that we have the same insurance company, so obviously they have approved Ibrance with Faslodex for others! My letter from them says specifically that they will not accept a letter from the doctor, it has to be from me. I made a copy of the results of the Paloma 3 study that says specifically that this combo "improved progression free survival in hormone receptor positive advanced breast cancer that had progressed on prior endocrine therapy, and can be considered as a treatment option for these patients." Do you think I should send them a copy?

    I also have CVS Caremark, so maybe I will call them too. I looked at Pfizer on line and see that they have a program for underinsured, don't know if that would work for me? I will call them too. Thanks so much for the suggestions!

    Deanna, One of my friends suggested that I just get the Letrozole too. Isn't that just crazy!? I will do what I have to, but that just seems so wasteful. So it was the pharmacy that balked at the Ibrance/Faslodex and not the insurance company itself? Interesting! Thanks for the suggestion.

    Thank you both, I will let you know what I find out. Linda

  • PattyPeppermint
    PattyPeppermint Member Posts: 8,950
    edited January 2016
    zill. We know each other from the insomniac thread. Sorry to hear iof your progression. Ibrance \ Falsodex has been farely easy on me
  • dlb823
    dlb823 Member Posts: 2,701
    edited January 2016

    Linda, I have Cigna insurance, and they have their own specialty pharmacy, and it was the pharmacy that gave me the hard time -- wanting to give me Letrozole with my Ibrance, when I only needed the Ibrance (alone) because I get Faslodex through my onc's office. They kept insisting that you had to have Letrozole and Ibrance together. Also, when you get things straightened out, be sure your resource (pharmacy, specialty pharmacy or onc) signs you up for the further discount from Pfizer. They'll know what it's called and it was talked about here a page or two back. It should take your co-pay to $10, which insurance alone may not. Deanna

    edited to correct a typo

  • lindatwo
    lindatwo Member Posts: 55
    edited January 2016

    Deanna, Oh, okay, that makes sense then. It must've appeared to the pharmacy like you were taking Ibrance alone since they weren't dispensing the Faslodex. (Yikes, do some people actually get that from the pharmacy? Can you imagine giving yourself Faslodex shots at home?!) I will definitely make sure I get signed up for the discount from Pfizer. I believe I saw the application for that on Pfizer's website too. I will try looking back at everyone's posts here. I don't know what Ibrance costs, but I remember what Afinitor cost and I'm sure it's not much different. So, $10.00 sounds amazing! Thanks, Linda

  • dlb823
    dlb823 Member Posts: 2,701
    edited January 2016

    Linda, Ibrance is $11,600 for a 21-day supply -- although it seems to vary a bit by region & pharmacy. That's why the Pfizer deal is so important. Even my co-pay with Cigna (before the Pfizer discount) was considerably higher than any other RX co-pay. Faslodex, by comparison, is billed @ $2500 by my local onc's office.

  • susan_02143
    susan_02143 Member Posts: 2,394
    edited January 2016

    I will add that if you live in a "parity" state [such as MA], there is no copay if your insurance has no copay for infusion drugs. This is a cause that we should all be fighting for. There is no reason that chemo should be fully covered in a hospital/clinical setting and not covered if we are at home taking the drug by mouth.

    http://peac.myeloma.org/oral-chemo-access-map/

    [CA and NV are both on this list so now I am wondering, do you have third-party or government insurance?]

    *susan*

  • dlb823
    dlb823 Member Posts: 2,701
    edited January 2016

    Susan, I totally agree that all chemos -- whether infused or oral -- should be treated the same by insurance. But Ibrance isn't technically a chemo -- even though the insert apparently uses that word, possibly in discussing the proper way to dispose of it. I'm bringing this up not to nit pik your point, which is totally valid. And if it's considered a chemo by some states for the purpose of no co-pay, all the better! I just want to reassure Linda and anyone else starting it that it's not chemo, but a targeted therapy, and much easier for a lot of us than chemo, even though it also lowers wbc's. Deanna

  • susan_02143
    susan_02143 Member Posts: 2,394
    edited January 2016

    Deanna,

    Here in MA, Ibrance was covered under the parity law, hence, why I made the point and had no copay. I know that it is not a chemo, but the parity law stipulates that if the drug would be covered in a hospital as treatment, then it is covered if taken by mouth. I do believe that the treatment options are getting ahead of the laws we have to protect consumers.

    *susan*

  • mdillard04
    mdillard04 Member Posts: 83
    edited January 2016

    Hi ladies,

    Results are in! No evidence of metastatic disease!! Whoo hoo. I was stage 4 from the beginning and never had surgery, so one little spot in the primary tumor lit up (minimal uptake). I see my onc in Friday. I think he may want to remove it surgically. So happy for the good news. Now if I can only get this bloated stomach and non stop gas to go away! Thanks for your positive vibes. You gals are amazing!!

    Monika

  • Lynnwood1960
    Lynnwood1960 Member Posts: 1,107
    edited January 2016

    Monika!! GREAT news!!! Very very very happy for you!!!😄.

  • Bobcat86
    Bobcat86 Member Posts: 12
    edited January 2016

    I started on Ibrance in May still at125 mg the last  2 months I decided to supplement with vitamin c, iron and folic acid . I checked with my doc first all my blood work have always been normal since I started, but just slightly creeping down every month. Last month my labs were excellent . I am not advocating that anyone else should do this.  I will have to watch my labs for a few more months and always check with your doc. I will be getting my labs drawn again in two weeks I will keep you informed.

  • Bobcat86
    Bobcat86 Member Posts: 12
    edited January 2016

    I forgot to say that I also take calcium and vitamin D since May as prescribed by MO to prevent  bone loss 

  • Kaption
    Kaption Member Posts: 2,934
    edited January 2016

    Monika-great news! Thanks for sharing!

  • Zillsnot4me
    Zillsnot4me Member Posts: 2,122
    edited January 2016

    Hootie Hoo PP. thanks for the heads up.

    I already take cranberry, vit d, calcium, magnesium and calcium supplements. Fish oil when I remember it.


  • moissy
    moissy Member Posts: 371
    edited January 2016

    Welcome to the new posters and any new readers on the thread.

    Monika- Such great news. That is fantastic! Hope you have a great celebration!

  • dlb823
    dlb823 Member Posts: 2,701
    edited January 2016

    Monika!!!! Woo-Hoo!!!!!!!!!!!! So happy for you, and so thrilled that Ibrance is working that well for you!!!!!

    Bobcat, great to know your counts have been holding so well! I'm neither a doc nor a nutritionist, but I read a lot and articles like the one I'm going to post here have made me rethink the wisdom of supplementing with iron on a regular basis, which I had also been doing after needing a couple of transfusions for anemia 18+ mos. ago. I still pop an occasional vegan iron supplement, but for what it's worth, here's the research that links iron to breast cancer metastatis. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC373634...

    For those who don't care to read the whole thing, the research (2013) concludes... "Despite major advances, breast cancer remains a clinical challenge. Improved understanding of metabolic changes that occur in this disease may benefit both prognosis and therapy. A large body of laboratory and clinical evidence indicates that iron is closely associated with breast cancer growth and metastasis. Breast cancer cells increase levels of intracellular iron through multiple pathways, including increased uptake and decreased efflux. The dependence of breast cancer on iron presents rich opportunities for improved prognostic evaluation and therapeutic intervention."


  • Bobcat86
    Bobcat86 Member Posts: 12
    edited January 2016

    Interesting I will also rethink the iron supplement.  Anything on folic acid and vitamin c?  

  • PattyPeppermint
    PattyPeppermint Member Posts: 8,950
    edited January 2016

    monika. Congrats!!!! Awesome news !!!!

  • babs6287
    babs6287 Member Posts: 1,619
    edited January 2016

    Monika. That's great news!!! Happy dance time!!!

    Babs

  • time-for-a-cure
    time-for-a-cure Member Posts: 67
    edited January 2016

    I am just starting my eighth round of ibrance/letrozole . My only met is in the super clavicular node on the opposite side from my original cancer . So far it has decreased significantly in size and my CA 27. 29 has gone from 170 down to 25. So I've obviously had a good response. I am wondering how long some of you have been on Ibrance And how long I can expect a favorable response to continue? Looking forward toyour responses.