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Ibrance (Palbociclib)

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Comments

  • pearlady
    pearlady Member Posts: 390
    edited July 2015

    Hummingbird welcome to Ibranceland.  I hope the combo stops your progression and works for a very long time. 

    I haven't been posting much lately, but do follow the thread.  I have have been on Ibrance since the end of February, so have lost track how many cycles I have completed.  Maybe six or seven???  For me first and foremost is the fact that I am stable with very little side effects.  But on the hair front I am pleased that my hair is growing.  I had very short and thin hair when I started on the combo from my previous treatments.   My hair has grown substantially since I started and is getting somewhat thicker. Along with the many supplements that I take, I take Biotin three times a day, as recommended by my holistic pharmacist.  Biotin is suppossed to help with hair growth. 

    Babs glad you had a great vacation and are now getting settled in NYC.

    Sharon best of luck with your appointment. I hope you get some positive news.

    Have a great day everyone.  Its steamy here in NYC.

     


     

  • Sunshine57
    Sunshine57 Member Posts: 13
    edited July 2015

    I have been on Ibrance 100mg with Femara for 2 weeks. Really no side effects up until today. I woke up feeling very fatigue and heavy. Still have one more week for going off for 7 days. What other side effects have you ladies experienced. I am praying this works because my ONC says this is the last chemo pill for me before IV chemo.

  • Lynnwood1960
    Lynnwood1960 Member Posts: 1,107
    edited July 2015

    Sunshine, I have been on this combo for 4 cycles. So far, fatigue is my main side effect. I have some stiffness and aches from the Femara but I have been on it before so I am used to it. I have found my fatigue improving as time goes on, but I am out of work on medical leave, so I'll have to see how the fatigue is when I return to work. I have found that I feel really good on my 7 days off. I am also on 100mg. Good luck, hope this combo is the answer for all of us! As a side note, my tumor markers have gone down close to 100 points since I started treatment and the scan I had last week shows no organ involvement, bone only

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

    The third week is my fatigue and "heavy" week, and then I hope to recover during the 7 day respite. Small detail... Ibrance is not chemo. I think we all hope to have good luck on this drug to avoid IV chemo.

    Good luck this week!

    *susan*

  • Lynnwood1960
    Lynnwood1960 Member Posts: 1,107
    edited July 2015

    Susan, my onc calls Ibrance chemo. She calls this treatment hormonals combined with chemo. I have not had any IV chemo as of yet, hoping to avoid

  • Hummingbird4
    Hummingbird4 Member Posts: 220
    edited July 2015

    Pearlady, Thank you. I am happy to hear that it is possible that my hair will grow back while on this treatment. I check it a few times daily in a lighted, magnifying mirror looking for some peach fuzz! Nothing yet, but hopefully soon.

    Good Luck to everyone! I am so hoping we all have a good run on Ibrance.


  • Rainedrop
    Rainedrop Member Posts: 43
    edited July 2015

    I just started my second cycle of Ibrance on Tuesday. My white count didn't come up at all on my week off. My onc was on the fence and decided to drop to 100. So, I didn't ask him because I was so happy about my scans showing response. He gave 2 numbers 1100 and 1.1. Is this really low, and what does that mean to me?My red count stayed at the low side of normal.

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

    Looking over the side effect profile of Ibrance, I said to my onc, "So how is this not chemo?" She replied, "Yeah, I think of it as chemo," I know it's a targeted therapy, but the label on the bottle says "Chemotherapy drug toxic dispose of as biohazard". I find this validating.

  • pearlady
    pearlady Member Posts: 390
    edited July 2015

    Don't know how you would definite what is chemo and what is not.  Why is Afinitor considered an oral chemo and not Ibrance?   I do know, however, that from personal experience, that although there are side effects, this has been much easier than IV chemos and other oral chemos such as Afinitor and Xeloda.  But we are all different. 

  • Rainedrop
    Rainedrop Member Posts: 43
    edited July 2015

    why has this developed into whether Ibrance is a chemo drug or not? I don't like this. We should be helping each other, not arguing

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

    Yes, I am sorry that I mentioned this. I like precision in language, so I call Ibrance a targeted therapy when I discuss this drug. This is a different world to me than the A/C cocktail I experienced back in 2005 or the FEC and other combinations that my poor sister has taken, so it helps my family to think of this drug as something else.

    *susan*

  • pearlady
    pearlady Member Posts: 390
    edited July 2015

    Sorry I wasn't bringing it up to argue.  Just find it interesting why one drug is chemo and why one is not.  Even Drs. don't agree.  It's like my onc said years ago, "in many ways treatment of breast cancer is an art as much as it is a science".  I found this an interesting perspective. 

  • Rainedrop
    Rainedrop Member Posts: 43
    edited July 2015

    Carolyn, I am so glad I read your post. I have a brand new bottle of Ibrance 125 and seriously thought about trying to guesstimate how much to remove to make it a 100. I won't do that now. So I am thinking 1100 isn't terrible bad for my wbc

  • mimipickle
    mimipickle Member Posts: 160
    edited July 2015

    Hi Sunshine, I am in the middle of my second cycle of Ibrance/Femara. I have mild se I think. Some fatigue, stiffness, especially in my lower back in the morning. Is it Ibrance or Femara causing that? I don't know. This is all new territory for me. I have some mets in my spine-lower back but the MRI also showed degenerative stuff too--so what;s the pain from? I just try to ignore it and do my usual activities.

    My wbc started at 11.9 and dropped to 4.3, the Absolute Neut. went from 7.2 to 2.0 after the first cycle. So I started the second cycle and my ON didn't ask for another blood test until a couple of days before I see him again on Aug 25. I guess I seem to handle the drugs well? Good luck to us.

  • Max_otto
    Max_otto Member Posts: 124
    edited July 2015
    Good Morning Ladies,
    I thought I would post on my SE's of Palbociclib and Femara, I've had no hair loss and minimal side effects. I feel quite well and am fully active, there are days when my energy has dropped but not often enough to be a issue. Also, on my last tumor markers, one fell into normal range, and the other two had decreased values. In a few weeks I will have my first scans and will know more about the effectiveness of this protocol. That is why I follow this thread, hopeful that others will post positive results from this combo and it is working.
    I treasure every day, knowing that one day things may change but not today.

    Kathy
  • Lynnwood1960
    Lynnwood1960 Member Posts: 1,107
    edited July 2015

    I also did not mean to be disagreeable when I mentioned that my onc calls this chemo. I just found it interesting that different oncs call it different things. Perhaps this drug is so new that the oncs don't know what to call it. Sorry if anyone was offended. No argument intended! Peace

  • pearlady
    pearlady Member Posts: 390
    edited July 2015

    Kathy so glad to hear your good news.  I feel as you do.  Some day things will change, but not now.  So like you I am going to enjoy every day to the fullest. 

  • jobur
    jobur Member Posts: 494
    edited July 2015

    Hello Ibrancelanders!

    I have been on Faslodex for a bit over 3 months. This is 2nd line tx for me. Anastrazole kept me barely stable with a little progression after 9 months. Just had PET scan last week and Fas appears to be working well so far on my bone only mets, but I see in the PALOMA3 trial the average time to progression (whatever that is worth) is only 4 months, 9 with Ibrance.

    So I talked with my mo regarding adding Ibrance and she said she would set the wheels in motion. To my surprise, I already got a letter from my insurance company saying it is approved for 6 months!

    After reading some of the se's here, I am wondering if I am jumping into the fire too soon. Life has been pretty good so far on Faslodex. When I talked to DH about adding Ibrance his question was "what would you gain?" If we only knew, right?

    Would appreciate any thoughts/suggestions on pros/cons of adding Ibrance. I have zero understanding of how it is supposed to work.

    Looks like most have it paired with Femara. Any Fas + Ibrance gals here?

    Thank you and hope you all get a good long run on this!

  • cling
    cling Member Posts: 263
    edited July 2015

    Jobur, I have been on Fas for over a year, although the TM continues to rise slowly, but scans (CT & bone) are all "stable". I asked my MD Anderson Onc in June if I should have Ibrance added to the treatment plan. His response was, Fas is working and we will not change unless the images show progression. After enjoy almost SE free on Fas for so long, I am a bit happy not to add the Ibrance now. but I do read this thread with great interest.

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

    No arguing intended.

  • tina2
    tina2 Member Posts: 758
    edited July 2015

    Jobur,

    Echoing "cling" here. I posed the question to my onc several months ago when the news about Ibrance hit. He said " You know, Ibrance is no walk in the park," and then said we should consider adding it if and when the cancer progressed. In the meantime--which I hope is very long--Faslodex is keeping my cancer stable. So we're keeping on keeping on.

    Tina

    P.S. Obviously, I also read this thread with interest!



  • jobur
    jobur Member Posts: 494
    edited July 2015

    Cling and Tina2,

    Thanks for responding. Is Faslodex your 1st line tx?

    I'm wondering if it will still work to add Ibrance after progression on Fas. Sounds like your mo's believe it will, but is there any basis for that? I imagine there could be, for instance if people in the placebo half of the trial who had progression were then given Ibrance and responded. But I don't know if anything like that has been reported.

    I hate feeling like tx decisions are such a crap shoot, but that seems to be the way it is. Gather all the best information you can find and then take your best guess.

  • RosesToeses
    RosesToeses Member Posts: 244
    edited July 2015

    I hesitate to weigh in on side effects since I seem to be off of Ibrance about as much as I'm on it due to neutrophils, but I really haven't been feeling the fatigue and my hair's the same as it ever was.

    What are you ladies doing with unused pills? Since I'm now on the 75mgs, I've had unused portions of the 125 and 100 bottles--is it safe to throw them away? Is there somewhere I should bring them? When I got them from CVS specialty they were pretty much just thrown in an envelope but Walgreens specialty does a much better job (insulated in a box with an ice pack, etc) but includes the "chemotherapy--handle properly" bright yellow bag which has me thinking I might need more than the trash. I can call the pharmacist, but I thouh I'd ask here first :)

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

    jobur,

    I think that this might be a case of "be careful what you wish for." I got 5 full years of NED and no progression from Faslodex. I know that this is an unusually large number of months, but it is possible. I can not begin to tell you how much I miss Faslodex since I had very few side effects, none of which lasted the whole month. Well, there was the butt soreness that increased as the amount of scar tissue increased with each passing month. Ibrance is, again, for me, a much harder drug to ignore. Carefully consider if you want to add a second drug to your cocktail. It might be the right thing for you, but it might be a response to the adulation that Ibrance is receiving at this moment.

    My only regret is that as my markers headed up, Ibrance was not an option to add to my Faslodex regimen before these new mets appeared on the scans. Sometimes timing is just off, and for me, this was one of those times.

    However, if your onc agreed with this change of protocol, maybe this is the right moment for you to add a second drug. I think that Faslodex and Ibrance together has had some good results in trials, and doesn't seem counter-intuitive to me. Now, remember, I do not have an MD at the end of my name.

    All the best as you decide what you will do.

    *susan*

  • tina2
    tina2 Member Posts: 758
    edited July 2015

    Jobur, yes Faslodex is a first-line treatment for me.

    Tina

  • Lynnwood1960
    Lynnwood1960 Member Posts: 1,107
    edited July 2015

    Roses, I also have a couple of 125 mg that I am not sure what to do with. For now, they are still in the original bottle. If you find anything out, please post. It does seem like a shame to waste such expensive medicine

  • Myra1211
    Myra1211 Member Posts: 532
    edited July 2015

    Roses, I also have some 125s. Please let us know. I was considering taking them into my MOs office if someone needs them. Myra.

  • Romansma
    Romansma Member Posts: 650
    edited July 2015
    Good morning Ibranceland! Just came back to check on my buds! Wanted to let you all know that the fatigue is not your imagination. I've been off Ibrance for about a month now, and with each passing week, I get more and more of my energy back. I'm almost surprised at what I can do these days without a nap! That said, the side effects of Ibrance were very tolerable. Especially when compared to treatments like Afinitor and chemo! Looking forward to hearing more and more good news about Ibrance!

    I got a call yesterday that I was approved to start Xtandi. This is a drug used to treat Androgen receptor positive cancer. It is in trials now. Most of the trials that fit my profile are closed, so I applied to use it off label. Anyway, just wanted to mention this as a possibility for those of you that are looking into what your next treatment may be. I have started a thread on this and will update on side effects and effectiveness. Hummingbird was on one of the trials for Xtandi and is now on Ibrance. She has been so helpful in making me feel comfortable about taking a drug off label.

    TGIF! Have a great weekend!
  • Max_otto
    Max_otto Member Posts: 124
    edited July 2015
    Roses, Myra,
    On unused pills,
    I gave my 125mg to my MO, someone else unfortunately will need them until their insurance comes thru, I will do the same on the 100mg as I'm now on the 75mg dosage.
    In my MO office when I started on Ibrance I was number 7, 2 weeks ago, there were 15 of us, I am sure someone can use this drug.

    Stay well,
    Kathy
  • mscal02
    mscal02 Member Posts: 167
    edited July 2015

    Hi All: I saw my Onc. yesterday . My counts were low,but not enough to stop Ibrance. This is my off week and he feels that they will bounce back. I'll see him in three weeks.I had written a list of side effects for him as I was thinking about them so I wouldn't forget and just passed it on so he could put them in his notes.

    The pharmacy told me that they don't take pills back. My Onc. told me to bring my Xeloda to them and he'll make sure some patients that are waiting to get approved can use them.