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Ibrance (Palbociclib)

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Comments

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

    Oh, Babs, I'm so so sorry, and almost in tears after reading your news. (((Hugs))) and know that you are and will be in my prayers.

  • moissy
    moissy Member Posts: 371
    edited October 2015

    Oh, Babs - I am so sorry to hear that news...That is really a disappointment :( Please do stay here on this thread and let us know what you find out on Tuesday. Sending a big hug your way....

    Moissy

  • Myra1211
    Myra1211 Member Posts: 532
    edited October 2015

    Babs so sorry to hear your results. Best of luck to you with your new tx and tests. Myra.

  • Hummingbird4
    Hummingbird4 Member Posts: 220
    edited October 2015

    Babs, same here - very sorry to hear about your results. Want to wish you good luck with your tests next week. I'm hoping that you have a great and long success with your next treatment. Please keep us updated.

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

    Babs, so sorry that this is not the combo for you! I'm sure your onc will come up with a treatment that will knock those mets back. Hang with us for as long as you want

  • mdillard04
    mdillard04 Member Posts: 83
    edited October 2015

    Babs,

    So sorry to hear! Sending you hugs and love! I pray your onc finds another combo that works!! Thinking of you!

    Monika

  • Sue2009
    Sue2009 Member Posts: 96
    edited October 2015

    3Holly in Fl u can exchange Sharp container at local fire station. I took Ibrance for 1year through clinical trial. My TM never went down, I ended up on lowest dose 2 weeks on 2 weeks off. Very disappointed it didn't do anything for me. I only have bone mets.I have had radiation to both hips recently. Which seemed to help my pain. My PET Scan showed marked progression. I also took flu shot 5 days before Scan and had to cancel due to extreme pain in my left femur & ran a fever. Long story short time to look for new treatments. Any one here ever heard of Quadromet IV for bone mets? I am looking into this but would like to hear of anyone else's experience. Thanks. su

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

    So sorry Babs. Please do stay in our discussion and keep sharing. I pray you find the right path for you!

  • jobur
    jobur Member Posts: 494
    edited October 2015

    Babs, So sorry for your news, but it looks like there are still many tx's for you to try, and hope the next one will be THE one that has you dancing with Ned. Will be holding your hand in spirit on the 15th, I would (will) be afraid of liver biopsy too.

    Sue2009, Sounds like you got some crappy news too. So sorry. Glad the rads were helpful for your pain. Maybe start a new thread with your Quadromet question so you get a wider audience. Hope the next tx is good to you.

  • babs6287
    babs6287 Member Posts: 1,619
    edited October 2015

    Thanks you all for your thoughts, words of encouragement, hugs and prayers-they really mean so much to me!!!!!

    My MO sent me info on 2 clinical trials plus info on a shot I'll be taking monthly-prolia/xgeva

    One study is researching different strengths of GDC0810

    The other is for Faslodex and a placebo combo or a combo of Faslodex and Taselib.

    Does anyone know anything about these drugs. I know many of you have taken Faslodex by itself- any insight would be appreciated.

    Thanks so much!!!

    Babs

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

    Babs,

    Sorry it has taken me so long to join the chorus of disappointment. I have having some significant fatigue issues, and my job is getting what energy is left.

    I was on Faslodex for five years, of which at least 4 3/4 yrs I was NED. I found the side effects to be much easier than Ibrance. I know nothing about Taselib so can't help with that one. My casual calculations think that Faslodex doesn't work for a large percentage of people, but for those that respond well, it works for a very long time.

    If you want to PM me about Faslodex, feel free. And of course there is a comprehensive thread on this forum that can give you a wide range of the experiences.

    Best of luck on whatever choice you make.

    *susan*

  • babs6287
    babs6287 Member Posts: 1,619
    edited October 2015

    I'm sorry it's Taselisib

    Babs

  • moissy
    moissy Member Posts: 371
    edited October 2015

    Babs - I've had three Xgeva shots so far. I started on that just before starting Ibrance/Femara. I did not experience any negative side effects from Xgeva. They told me that I might feel flulike symptoms afterward, but it has never happened. My hip/leg bone pain went away almost entirely after I started the Xgeva. You do have to be aware of calcium levels with it. So if you aren't already taking a calcium supplement, you may need to. So glad there are some clinical trials of interest! Hope you will find something that knocks it out of the ballpark!

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

    Babs, I'm sorry to hear about progression. Not the news we wanted. The taselisib you mentioned sounded familiar so I did a search. It was LindaE54 who posted at the end of August that she was considering that trial.

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

    Babs,

    I've been on xgeva for about a year and a half. No problems at all with side effects or calcium levels. My MO did mention I would stop the shots next April when I will have been on it for 2 years. Didn't know that before she mentioned it.

    Best wishes on your next treatment choices,


  • babs6287
    babs6287 Member Posts: 1,619
    edited October 2015

    Thanks Shetland for the lead

    Babs

  • pearlady
    pearlady Member Posts: 390
    edited October 2015

    Babs so sorry to hear about the progression. Not the news we wanted to hear. Praying for you and hoping that the next treatment kicks those mets. Great that there seems to be many options for you. Please keep us posted.

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

    Kaption, Same with me that I have really cleaned up my diet even more than usual so thought I had this one dialed. So far they haven't said I will have to do meds and I hope it subsides a little next visit. We had a Walk-a-Thon at my school yesterday and for the first time, after walking around not that much, I felt extremely fatigued and a little lightheaded/short of breath. It really caught me off guard. Not sure if that is part of the BP or just the meds.

    Babs, so sorry to hear about progression and that this combo didn't work for you. I hope the next round works some magic. I have no idea yet if this is working and it scares me to think I won't have another scan until late November. I have only had one lab result from TM numbers, she did not have them tested this last time, and get the next at the end of October. So haven't even got enough results to see a trend yet?? Seems like a lot of time passes in between tests giving my liver tumor time to have a party....

    Congrats on the TM numbers Deanna! I always learn new details I should be watching for on my labs from you. My alk/phos was in the normal range the first time and on my last lab results it was not even listed?? What do these number signify? Good luck scanners! Sending best wishes for all...



  • Groovywilma
    Groovywilma Member Posts: 47
    edited October 2015

    Hello! I'm new to Ibranceland and just started cylce 2. Have any of you had peeling skin on your fingers? It doesn't hurt and it's not itchy. My hands feel like they're pruney, even though they are not in water. Just wondering if others have had this. My other side effects are manageable: fatigue, some "spaciness", mouth sore and right now I am getting my blood work checked every week. Thank you for all the info here. Best of luck to everyone!

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

    Groovywilma, I have also had the prune look and feel on my fingers, you are the only other person I know that has mentioned it! I thought I was crazy! Lol! No peeling of skin though. I m just finishing my 6th cycle

  • usha14
    usha14 Member Posts: 8
    edited October 2015

    Hello Everyone, my Onco recently suggested to go with Ibrance but its turning out to be very expensive since I am uninsured. If anyone would like to donate their unused pills then please do let me know. Hoping to get this soon somehow..

  • usha14
    usha14 Member Posts: 8
    edited October 2015

    Hi Babs,

    Sorry to hear about your progression and I hope new drugs under clinical trial works for you. My Onco had recently prescribed Ibrance and it is turning out to be very expensive for me since I am uninsured. I am wondering if you have unused pills that I can use. Please do let me know. Cheers & Good Luck to us.

    Usha

  • cjanet
    cjanet Member Posts: 288
    edited October 2015

    Babs, so sorry to hear of your progression! That really sucks. I'm sort of in a no mans land right now. My scan looked very similar to the one in July if not a little worse, but hard to tell since it was a different machine used, one w stronger magnets. My onc wants to continue the Ibrance for now. She didn't take tumor markers this month but will do them on November 2, so we'll see if there's any pattern of progression or the reverse then. She also increased my OxyContin to 40 mg 3 times per day so that should help w pain and for one day so far it seems to be working

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

    Groovey, I got mouth sores in the first round, swollen gums, teeth pain in a recent filling and a sore jaw. Not this time around....weird

  • mimipickle
    mimipickle Member Posts: 160
    edited October 2015

    Cristina, I'm glad you didn't get yanked off Ibrance. I'm about to start cycle 5 and I get my first scan since starting any treatment on Nov 19. Hope the oxy keeps you comfortable.

    Groovywilma, welcome to Ibranceland!

  • jobur
    jobur Member Posts: 494
    edited October 2015

    Ellelou, Isn't that a new avatar? That baby looks so tiny, do you have a brand new Grandbaby? Congratulations if so, apologies if I'm not remembering correctly.

    Cristina, I agree with Ellelou, I'm glad your mo is giving the Ibrance/Fas combo a chance to work. Some of these therapies seem to take some time before you see results.

    I'm just finishing up round 2 of Ibrance/Faslodex. Slightly less fatigue than during round 1. Anyone else getting achy/restless legs or dry, tickle in your throat cough? I only seem to get these during the 3rd week and last cycle they went away during my week off, so suspect they are se's.

    Wishing everyone in Ibranceland a pain free, restful Sunday.

  • mimipickle
    mimipickle Member Posts: 160
    edited October 2015

    Jobur, Yes, new avatar and that's Ruby Louise, my granddaughter, who is now close to 15 months old. I wasn't on here when she was born in July '14 because I didn't know I had bc yet. I'm about to start cycle 5 of Ibrance and I think the se's are less or maybe I am used to the new normal. However, I never had many se's in the first place--maybe some fatigue?. My wbc started at 11 went down to 4 and up to 7. I think the Letrozole might be more of a problem with feeling weird and clammy and I hate the humidity we have had this summer in SoCal.

    Ellen

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

    Jobur, I do seem to have an annoying dry tickle. I don't go anywhere including bed without a water bottle. Also, I don't get "restless legs" per say but calf cramps even though I am always pounding water. I am halfway through round two of Ibrance and have some fatigue but not terrible.

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

    artist and jobur, I have also been getting pretty severe leg and foot cramps during the night. They awaken me and often keep me awake because I can't seem to position my legs in any direction to uncramp them. Since it's my "off" week for Ibrance, I wasn't sure if it was Faslodex or Ibrance causing the problem. Deanna

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

    Deanna, I am on Femara and Ibrance. I think it is the Ibrance as they got better on my week off.

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