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Ibrance (Palbociclib)

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Comments

  • faheem0
    faheem0 Member Posts: 3
    edited February 2018

    Hi Chicagoan,

    Thank you very much for your reply, but I didn't get a notification of it, either on the site or by email. Did you reply to me? In general, is there any way to track replies to me? Sorry if this is obvious, but I'm not familiar with this forum.

  • Liwi
    Liwi Member Posts: 249
    edited February 2018

    Candy I started with 125/mg and counts dropped to low. Next moved to 100 mg and still had low count issues requiring longer breaks. My MO then changed me to stay with 100 mg but for 18 days on and 10 days off which has worked with my blood counts though I still get fatigue. She prefers that to moving me to a 75 mg dose for 21 days. My tumors shrank after my 3 month scan. I’ll scan again in late March and hope it will show this is still working for me.

    It’s interesting to see the different approaches.

  • GracieM2007
    GracieM2007 Member Posts: 1,255
    edited February 2018

    I’ve been having what I think may be tumor flare. Spent all weekend on Norco due to pain in my neck and shoulder, I have an appt tomorrow with my oncologist, don’t know whether to say anything or just wait until three month scans in another month

  • JoynerL
    JoynerL Member Posts: 1,392
    edited February 2018

    Gracie, I'm a believer in always saying something to your onc if you have a concern.

  • iwrite
    iwrite Member Posts: 746
    edited February 2018

    Gracie, Hope you can get the pain under control! If there is a chance your MO can help it's worth a call

  • chicagoan
    chicagoan Member Posts: 1,082
    edited February 2018

    Faheem,

    I sent you a private message just now. We do not get notified of replies to posts on threads so we just have to keep checking to see if anyone responded. We do get notified of private messages. Peace to you and your mother.

  • moissy
    moissy Member Posts: 371
    edited February 2018

    If you would like to be notified of replies on a particular thread, look for the heart at top or bottom of the thread and click on "Add to my Favorite Topics." Then click on the blue navigation bar that says, "My Favorite Topics." You will have the option there to "Add email notification." You'll then be emailed every time a new post appears on that thread. You can change this option if you decide later that you no longer want it. Hope this helps.

  • janky
    janky Member Posts: 478
    edited February 2018

    Hi everyone, I am another 'newbie' - and yes, I would rather not be, so be it, I am grateful for this site! I have been reading the posts for the last few days and thought I would jump in with this question, is there a place (preferably on this site) that explains some of the abbreviations and terms? I have determined that MO is Medical Oncologist, bone mets is metastatic, etc., Is there such a place here so that I don't have to 'guess' the terms? If not, that is okay I am truly learning from your posts and appreciate how difficult it can be to share our journeys. I am on Day 12 of my first 21 day cycle of Ibrance 125 with Letrozole - so far so good....

  • bigbhome
    bigbhome Member Posts: 721
    edited February 2018

    Hi all, I see several newbies. You are in good hands here!

    I have been feeling really terrible all winter. Lots of gastric issues, greater than ever fatigue and tons of stomach pain, while fighting two viruses back to back. We are also having a tough time right now. Too much to go into here. I am on cycle 27.

    I have decided that I am taking a break from Ibrance and possibly from Letrozole. I have 3 more days and then I am stopping until... I meet the Mo on March 6, he is not going to be happy with me but I need a break. My whites and reds need to get back to normal for awhile. I need to have some energy, I need to enjoy my life for awhile! I'm thinking one to three months off. Scans in April, then I can rethink everything.

    Good luck to everyone here! I hope that each of you get a long time on this drug.

    Hugs and prayers

  • PatgMc
    PatgMc Member Posts: 1,312
    edited February 2018

    BigbHome, I'm so sorry you're having a hard time. I'm glad you've decided to take a break and I don't think you'll regret it. I had promised myself a break anyway but then got the flu/pneumonia which made it a bit longer. I took around 2 months and then went down from 100mg Ibrance to 75mg. I'm so thankful for the good month I've had on that and I look forward to hearing about the nice changes you see. I'll be praying for you.

  • intolight
    intolight Member Posts: 2,419
    edited February 2018

    Hi Janky. Welcome to our little group. If you will scroll below all of the dark blue bars at the top (All Topics, Active Topics, etc.) you will find a separated blue bar that says "Help with Abbreviations". Click on that and that should help you. I am glad you are doing well so far. Some of us are able to stay with 125 but others are not. Whatever happens, I hope you find the help you need.




  • janky
    janky Member Posts: 478
    edited February 2018

    Thank you - just what I was looking for...I will keep you posted and just being able to read/share these posts is great therapy'!

  • CloudNine
    CloudNine Member Posts: 19
    edited February 2018

    Hi Janky - sounds like we're starting down the Ibrance road together at the same time. I'm also on Ibrance 125 mg with letrozole and so far I haven't had any major issues either these first few weeks. Had my first bone builder infusion of Zometa today and no pain or reaction yet. Thanks everyone on your advice to take Claritin - I think it helped a lot, even though my onc nurse had never heard of it before.

  • CloudNine
    CloudNine Member Posts: 19
    edited February 2018

    Zometa kicking my butt today. Every bone aches, chills, dizziness, nausea, headache. Guess the Claritin didn't work for me after all - bummed. Supposed to be 40 today - birds are happy. Happy Valentines Day to all of you. Hope someone's love blessed your day

  • GracieM2007
    GracieM2007 Member Posts: 1,255
    edited February 2018

    I saw my oncologist yesterday got the results of my blood work up. All of my blood counts are down, and my tumor markers continue to rise. I’m on my second round of Ibrance. The oncologist is concerned, so I’ll have a MRI and two weeks and then a CAT scan and a bone scan. He said my pain should not be increasing that should be going down by now, that and the increasing tumor markers has him concerned. I’m just really scared that Ibrance is not working. He did reassure me that I Brandts works very slowly and I already knew that but that with the new extreme pain in my neck has him very concerned. So I guess we’ll see. I’m really bummed out, I was really hoping this would be my drug that would give me 34 years. Femara only lasted a year. I was hoping for three years from it but no such luck. Will let you all know when I figure something out

  • intolight
    intolight Member Posts: 2,419
    edited February 2018

    Gracie, I am so sorry to read that you are struggling on Ibrance. I will pray it is only a flare as the Ibrance is working (happens sometimes) and that your scans will look better.

    CloudNine, I am also sorry you are struggling on Zometa. My first one was rough also, but the rest have been much better. Stay well hydrated.


  • Jaylea
    Jaylea Member Posts: 440
    edited February 2018

    Gracie, don't give up hope on the Ibrance just yet. My first couple of months were hard, all kinds of weird pains in met- and non-met sites. My first scan showed irregular activity and I was convinced it was failing me. But in month 3 things settled down and my next scan was stable. Looking back, the pain was likely from healing. My TM's were never reliable so I don't test them, but I've heard from others that healing activity can cause them to rise, too. I was just on another thread where the topic was how the cold weather affects bone mets. Sending prayers your way.

    Janky, welcome. You'll get great advice and support here on just about any topic.

    Bigbhome, at cycle 27, yes, dear one, take a break. Let your body rest and your counts recover. Hugs to you.

    Hoping everyone enjoys a little indulgence and some 'me' time this Valentines Day.

  • janky
    janky Member Posts: 478
    edited February 2018

    Jaylea - where is the thread on cold weather and bone mets? I live in Alberta and it has been sooooo cold :) ...My hubby (43 years married in March) and I are going out for a surf and turf meal for Valentine's - I too wish everyone indulgence and 'me' time today and always. One of these days I will get out my diagnosis/treatment stuff and put it in my profile, thanks for such a great, supportive site.

  • blueshine
    blueshine Member Posts: 247
    edited February 2018

    Gracie, your neckpain reminded me on mine earlier this year. It was so severe that I couldn't ride in the car and driving was impossible. What helped me was professional massage. The MRI should show where is the problem. I just did my first PET scan after almost 3 cycles on I/F. No SE so far

  • NettaGER
    NettaGER Member Posts: 128
    edited February 2018

    janky: I asked the question in the Bone Mets thread, because we are currently having a cold weather period in Germany and since about then I also experience increased bone pain. I hurt all over and feel like an old woman. My physiotherapist said that there might be a correlation. It appears that other bone met sisters also experience the same issue.

  • blueshine
    blueshine Member Posts: 247
    edited February 2018

    Hi to all newbies! Sorry that you are here, but this group will support you in any way. You ll see that you are not alone . This tread was a lifesaver for me and I learned more than I could imagine.

    Prayers and hugs to all of you

  • midwest_laura
    midwest_laura Member Posts: 114
    edited February 2018

    I received all of the details from my 2nd opinion.  Basically ... stay the course.  I guess that's good.  All of the scanning this past weekend found a previously unknown met in my femur.  The new MO thinks that it has been there the whole time, but my minimalistic scanning never showed it.  So, the current plan is to sit tight and keep going with the 125 mg of Ibrance.  Regarding my fatigue - the new MO thinks that my exceedingly poor sleep may be the culprit.  I wake throughout the night with hot flashes and then can't get back to sleep.  So, we'll try resolving the hot flashes first before considering a lower dose.  This seems counter to what so many of you have reported here with regards to feeling better on 100 or 75 mg.  I'm willing to give it a try for another month or two.  If I don't see any positive effects on the hotflashes, I'm going to ask for a change.  Lower Dose  = QOL ??

    Oh, and regarding those tumor markers that have never been tested before... my aren't too high, are they?  I know, a number doesn't mean anything until you compare it to something else.  It's the trends that matter, right?  But, still....

    CA 15-3 = 27
    CA 27.29 = 27.0
    CEA = 4.5

    One final note - just wanting to brag a bit - my Abs. Neutrophils were at 2.14.  Yup.  That's right.  A whopping 2.14.  They haven't been this high since before big-guns chemo back in 2016.  Can I get a WooHoo!?!?! 


  • intolight
    intolight Member Posts: 2,419
    edited February 2018

    Midwest_Laura, good job on the markers, although sometimes they fluctuate and some oncs do not pay attention to them too much. Your blood levels, though, are great. Take a big breath, and relax. Give the Ibrance some time to work and your body time to get used to it. I am on cycle 21 of 125 mg and actually feel pretty fair most days, but it has taken me time. Don't jump ship too early.

  • janky
    janky Member Posts: 478
    edited February 2018

    Whoot! Whoot! Yayyy!

  • midwest_laura
    midwest_laura Member Posts: 114
    edited February 2018

    IntoLight: 21 cycles at 125?  Wow!  You've given me a new target.  If you can do it, then I can too.  Just need to breath and relax.

  • GracieM2007
    GracieM2007 Member Posts: 1,255
    edited February 2018

    I’m probably just feeling the fear that this may last way less time than the Femera. And tonight my mouth hurts...badly! I have a sore spot on the roof of my mouth and the back of my tongue! Geesh..if it’s not one thing it’s another

  • JoynerL
    JoynerL Member Posts: 1,392
    edited February 2018

    Midwest, YAHOO on the markers!! Gracie, I've never had the mouth sores, but there are lots of suggestions on this string for help with that. I recall that Patgmc uses a particular yogurt to great success. Just do a search; I think that you can find specific posts that way.

  • Frenchhorn654
    Frenchhorn654 Member Posts: 46
    edited February 2018

    Got results of my pet scan yesterday, no new mets, disease is stable, and since starting ibrance TM has quit rising and leveled off, onc is saying stay the course but since I've been feeling so sick on the 125 to bump it back down to 100. I feel relief and hope that I have can settle into this treatment for a long time!

  • JoynerL
    JoynerL Member Posts: 1,392
    edited February 2018

    Great news, Frenchhorn!!

  • Yaelle
    Yaelle Member Posts: 38
    edited February 2018

    Hello Ladies,

    First of all welcome to all newcomers. As others already told you, this is really a great thread, with a lot of support and love.

    Frenchhorn , so happy with this great news !

    Midwest, indeed your markers aren't that high, which is great. My CA 15-3 is about three times higher. Nevertheless, according to my MO, it's not a problem. She focus more on the trend of the evolution than on the absolute figures.

    Gracie, I understand your fears. However, I feel Ibrance as much stronger . Femara is 'only' a hormone-therapy, whereas Ibrance is a targetted therapy (considered as a light type of chemo ) and combined with a hormone-therapy. For me, Femara alone never worked, I developped mets in less than 5 months after chemo/surgery/radiation. Since I'm on Ibrance, skin mets seem at least to grow much slower.

    Leaving today for a few days in France (Bretagne), with my sister. This will help decrease my scanxiety ... first scan since the start of Ibrance will be in march.

    I send you all hugs and prayers from the other side of the ocean ;-)


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