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Ibrance (Palbociclib)

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Comments

  • blainejennifer
    blainejennifer Member Posts: 441
    edited October 2015

    I am new to Ibrance. I will be taking it with Femara. Started the Femara last night, and - boy oh boy - did I have vivid dreams! Luckily, I remembered reading here about that SE of Femara, or I would have been mildly freaked out.

    Starting the Ibrance tomorrow. No insurance problems, and my Onc reports that several patients in his practice are doing exceedingly well on it.

    Onward and upward.

    Jennifer

    PS: Kaption, you should probably call your Doc about the lung issues. On Ibrance, they really do want to know about every little thing. At least, that's the impression I got from my "Welcome to Ibrance" speech from the NP at my Onc's.


  • Kaption
    Kaption Member Posts: 2,934
    edited October 2015

    Thanks, Jennifer. I hope you do well on Ibrance and Femara

  • artistatheart
    artistatheart Member Posts: 1,437
    edited October 2015

    That's great news about your scans Kaption! I do not have lung mets but it seems like the ibrance caused me a little nagging cough. Also my allergies do cause a cough irritating cough as well as some "stuff". I would get it checked out with the back pain just in case though. Don't scans show the lungs?

  • dunesleeper
    dunesleeper Member Posts: 1,305
    edited October 2015

    Righto jobur! I'm betting within the next 3 weeks, and that is based on how soon I get the Ibrance. Does it only come by mail?

  • Kaption
    Kaption Member Posts: 2,934
    edited October 2015

    Thanks artist. I remember a couple of you talking about a cough. And I did just have a scan that should have shown any lung mets. I'll just tell my MO a week from Thursday on my regular appointment. That will give me time to see if it's getting better or not. Thanks

  • Hummingbird4
    Hummingbird4 Member Posts: 220
    edited October 2015

    Kaption - It's fantastic that your scan didn't show any lung mets but if you should get short of breath, definitely contact your MO. One of the rare SE of Ibrance is blood clot in the lung and I don't mean to scare you at all, but don't hesitate to check it out. When I was on the Afinitor/Aromasin combo I wound up with a bad inflammation and bleeding in my lungs. So lung mets aren't the only thing to worry about. You didn't mention anything about being short of breath, but just in case that should happen……. Hopefully your pain has nothing to do with any of that.

  • Kaption
    Kaption Member Posts: 2,934
    edited October 2015

    thanks Hummingbird. Blood clots have been in the back of my mind. I haven't had any significant shortness of breath and my back pain is a little better. Think I'll give it a few days, but certainly pay attention to any shortness of breath. Thank you

  • dunesleeper
    dunesleeper Member Posts: 1,305
    edited October 2015

    Here's the latest news: The oncologist at Carroll County confirmed that the lymph nodes are growing, so she cancelled my treatment that was scheduled for today and everything else that had already been scheduled. I said my goodbyes to the fantastic oncology nurses there and am now in contact with the oncologist at Johns Hopkins with whom I will be working. Most likely it will be an Ibrance trial. Apparently, they like you to be 30 days free of chemo first, so I should be feeling pretty good for a month.

  • Max_otto
    Max_otto Member Posts: 124
    edited October 2015

    Hello Ladies,

    I've been away for awhile, traveling out of the country. I've tried to scan the posts but there are so many, so I would like to welcome those new to Palbociclib, I'm sorry you are here but there are many informative ladies who bring support to us all.

    I did have blood tests while traveling and I will post on these on the travel board.

    I had my tumor makers drawn (3rd time) and they are significantly down, I am one happy clam. My CEA was down to 8 from a high of 28, CA 15-3 314 from a high of 501.1 Initially the markers rose similar to what's been reported by others. Also, I am on a 75mg dosage and my counts appear to be stable. I still have mouth sores at times, I've learned not to travel without my prescription mouthwash but otherwise I am okay. This is a wonderful birthday present as I was more tense about the results then I realized.

    I will have questions about Palbociclib dosages that I will discuss with MO tomorrow,

    However, I am more confident that this protocol is working.

    Kathy


  • susan_02143
    susan_02143 Member Posts: 2,394
    edited October 2015

    Welcome back Otto. Hope that your trip was fabulous! There is a travel board? If so, can you tell me where it is. I am very interested in how you managed blood work out of the country. *susan*

  • moissy
    moissy Member Posts: 371
    edited October 2015

    Kathy - Well, happy birthday! Can't think of a better way to celebrate. Congratulations on your great numbers!

  • hawksfansarah
    hawksfansarah Member Posts: 41
    edited October 2015

    Hello, friends!

    I'm on the third week of the first cycle of Ibrance, just sharing what's up with me:

    1) cough that doesn't go away

    2) terrible mouth sores (like railroad tracks in the mouth)

    3) less fatigue than on weeks 1 and 2 of the new med

    4) burning feet (I'm told that is because the nerves are healing from the damage caused by abraxane)

    I mitigated the side effects a bit by taking letrozole in the morning and Ibrance in the evening after dinner. This took away the fatigue I was experiencing on Ibrance, and the night sweats I was experiencing on letrozole. If the fatigue is really debilitating, as it was with me, changing the schedule of meds might work for you.

    I'm also on Himalaya's Livercare (available on Amazon) and Gaia's milk thistle (on Amazon and at Whole Foods), which has significantly lowered my AST in the two weeks I've been taking it (65 to 43). This is to mitigate the damage caused to my liver (including a cyst) while on abraxane. Encouraging results so far!

    Sharing in case something or other works for someone else.

    Happy Columbus Day!


  • artistatheart
    artistatheart Member Posts: 1,437
    edited October 2015

    Hi Hawks! That is an interesting idea to split up the meds.......Also, despite the fact that my Onc Poo Poo'd any supplements I have been reading a lot and have decided to wade in slowly with a few. Alternative/complimentary treatment just makes sense to me.

  • thinkpositive
    thinkpositive Member Posts: 4
    edited October 2015

    Hi Ladies,I am on cycle 8 of Ibrance and lately have been noticing a lot of hair loss and thinning to the point where it is becoming noticeable. Anyone else have this issue? I noticed some of the ladies on this thread are taking Biotin supplements. Was this okayed by your oncologist?

  • dunesleeper
    dunesleeper Member Posts: 1,305
    edited October 2015

    The doctor at Hopkins told me that Ibrance has been approved, so I can stay at my local hospital to get it. When I asked him about new treatments coming down the line, he replied:

    "Lots of things coming down the pike; but they would have to all be here downtown from what I see of our trials and not sure you would be eligible (depends on whether this is first diagnosis of metastatic disease or already received 1 or 2 or more lines of therapy).I think Ibrance is a really good drug for you to be on.

    Best,

    Ben"

    So, does this mean if Ibrance doesn't work there will be no more drugs for me? Wow!

  • dlb823
    dlb823 Member Posts: 2,701
    edited October 2015

    Dune, if so far you've just done Taxol and then Carboplatin and Gemzar, there should be quite a few other drug options for you. If you don't have it, PM Bestbird for her wonderful compendium of Stage IV treatments. It doesn't sound like you are at a point with limited options -- just that some trials may exclude you because you've had two or three chemos already.

  • Kaption
    Kaption Member Posts: 2,934
    edited October 2015

    Thinkpositive, I have certainly had hair thinning. I've never had really thick hair anyway. I'm nearly to the point of needing to wear a hat. I take Biotin (MO approved) for just a couple of the 5 months I've been on Ibrance. Not sure I see a big difference.

    Dune sleeper, I don't really understand the first line, second line thing. I was on Herceptin and Perjetta before Ibrance, but that's when I was HER2+. I'm now HER2- so this is my "first line" under this diagnosis I guess.


  • thinkpositive
    thinkpositive Member Posts: 4
    edited October 2015

    Kaption, thanks for responding! I never had really thick hair either, so with all this hair loss lately, it has been becoming more and more noticeable. I still work full time and most of the people at work don't know about my Stage 4 status, so this is becoming a problem. Not sure what to do. Thinking of trying the Biotin. What dose do you take ?

  • Kaption
    Kaption Member Posts: 2,934
    edited October 2015

    my Biotin is 500mcg. It seems like Iread that higher than that is just flushed from your body. But, not sure if that is true in our cases. I'd be interested to know what others take.

  • Myra1211
    Myra1211 Member Posts: 532
    edited October 2015

    Had blood work yesterday for cycle 8. All good to restart, but TMs rose again. I have been feeling so well, I feel like my body is lying to me. I don't know what to think, so sad right now. New PET scan scheduled for next month. MO feels as confused as I am, so we are going to rescan and see what is going on. He has another pt. just like me. A seesaw TM and good scans. He feels scans trump markers.

    This disease is good news/bad news. I hate it.

    Good day to all. Myra.

  • dlb823
    dlb823 Member Posts: 2,701
    edited October 2015

    Myra, that's such a tough spot to be in. If it's any help to you, my UCLA onc recently told me that TMs often tend to go up at first for several months on Ibrance before coming down, so maybe if yours were starting down and are up just a bit, it's more like stable??? But I sure feel your frustration! Hopefully, your onc is absolutely right about good scans being what's most important, and hopefully your next scan will definitively show that the Ibrance is working! (((Hugs))) Deanna

  • thinkpositive
    thinkpositive Member Posts: 4
    edited October 2015

    Myra, my TMs increased just before cycle 8 too. Since the increase was just by a few points, my oncologist is not too concerned.

  • dunesleeper
    dunesleeper Member Posts: 1,305
    edited October 2015

    Myra, I would trust scans more than tumor markers. Just my 2 cents.

    Thanks for your input Deanna.

    My god I'm depressed.

  • Kaption
    Kaption Member Posts: 2,934
    edited October 2015
    Oh, Myra and Dune, I feel for you both!
    Myra, prayers for good definitive scans.
    Dune, prayers for new treatments that support your body! I know they are out there.
  • artistatheart
    artistatheart Member Posts: 1,437
    edited October 2015

    Yes Myra, wait and see the scans. There have been so many in here that get TM's rising and still a stable scan. Dune, it does seem like Deanna and Kaption are correct when they say, "There are more treatments out there". Plus, think of how many Onc's have said it is OK to revisit some that you have already had. Hang in there, the sun will come out again!

  • Myra1211
    Myra1211 Member Posts: 532
    edited October 2015

    Thank you all so much for your wonderful support and caring love. Myr

  • dunesleeper
    dunesleeper Member Posts: 1,305
    edited October 2015

    Ditto what Myra said.

    Nerdy

  • kjones13
    kjones13 Member Posts: 662
    edited October 2015

    sorry to intrude, but wondering if anyone has heard from hope? Thanks

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

    Dunesleeper, the doctor's response is not very clear; I had to read it several times to make sense of it. I agree with dlb823. I think the doctor is only talking about new drugs still in clinical trials (i.e. coming down the line) when he says he is not sure you would be eligible. I do not think he is saying there are no other drugs left for you. In fact, I think there are quite a few. Make him tell you this so you can feel more optimistic.

  • jjski62
    jjski62 Member Posts: 43
    edited October 2015

    Hello everyone, I've been off the grid for several months trying to enjoy the summer, vacation, get my daughter off to college, etc. I wanted to check in to give you an update on my Ibrance experience. I was switched to 100 mg after first cycle, and was delayed in starting 2nd due to vacation, delayed start of 3rd due to UTI, got in 3rd and 4th, rescanned, and despite rising tumor markers last 6 months, CT and bone scans showed stable. I was not expecting to hear that but my onc said tumor markers are not specific, they would not change treatment based on numbers, scans are more definitive, sometimes these targeted therapies can have this effect, etc. Whatever, I'll take it. I will continue this course for another 3/4 months until the next scans. So I hope this information is helpful.

    I hope you all are doing well. So many posts since I've been away. There must be many new Ibrancers.

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