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Ibrance (Palbociclib)

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  • sondraf
    sondraf Member Posts: 1,667
    edited December 2019

    Ladies - I noticed four very small (as in look like someone pressed the end of a Sharpie on my skin) bruises on the inside of my left leg, up towards the top. I see in the literature that there can be blood clot risk on Ibrance, and potential increased bruising. A little concerned as this isn't an easy place to bruise and the location near a major artery. No swelling or pooling, just some very tiny bruises. Im on Day 20 - is this worth calling in about or watch and wait sort of thing?

  • BevJen
    BevJen Member Posts: 2,341
    edited December 2019

    On the issue of whether or not to switch treatments relatively quickly, I've been on Ibrance now since July. As I reported here before, I had a CT on Oct. 30. The radiologist said he "thought" there might be progression in my spine, but he wasn't sure what he was seeing. The MO had him re-read the report, and he pretty much said the same thing. Last week I had an MRI to look at my liver post July ablation of my largest lesion. Bones in my spine show up in that too, since they are looking at my midsection. Just got the official report posted on my portal today -- as IR had reported to me last week, liver lesions have decreased in both size and number. Yay! The interesting thing was that the IR who read this MRI and did the report says that the bone stuff is stable, with no increase in size and number of anything in my spine.

    Had I changed treatments after my October CT (which really wasn't a good imaging test for me because it didn't show the liver very well, either) it probably would have been a mistake. I would have run through a treatment that actually was working, and onto something that probably would have given me worse SEs. My body seems to have adjusted pretty well to the Ibrance/Faslodex, other than the usual fatigue common with Ibrance. I am very happy that I trusted my gut on this one and pushed back for more information before switching treatments.

  • simone60
    simone60 Member Posts: 952
    edited December 2019

    BevJen,

    I'm so happy you are still doing the ibrance dance. I'm glad you pushed back and had additional tests done.

  • BevJen
    BevJen Member Posts: 2,341
    edited December 2019

    Thanks, Simone. I'd rather deal with the devil I sorta know (Ibrance) than the devil I don't (I think that Piqray would be next).

  • denny10
    denny10 Member Posts: 421
    edited December 2019

    BevJen, congrats on pushing for further info. before changing treatments and then getting the good news your liver is responding well and bone stuff is stable. It's what we all want to hear.

    Keep 'enjoying' the Ibrance dance!!

  • dodgersgirl
    dodgersgirl Member Posts: 1,902
    edited December 2019

    diagnosed stage 4 last week. The plan is to start I/L in January assuming I get insurance approval and can afford the co-pay.

    MO is sending me to RO to see about palliative rads to thoracic spine before starting I/L

    I had a MRI of the thoracic spine after X-ray showed T12 compression fracture. That’s when mets were discovered. Tomorrow I have a PET scan to see where else mets are. Also am scheduled for brain MRI and may need MRI to other parts of my spine.

    What a shock (as it is for any of us). I had just been released from BS and got the “all is well” from Nov MO appointment. In fact, it was recommended I schedule to have my port removed. Just a few weeks later, pain in my back was so bad that I couldn’t get any sleep and was miserable. I have a history of back issues so I didn’t think it was cancer. Call PCP who ordered X-rays but told me it was probably back strain since fractures in the spine hurt all the time and I only had pain trying to sleep on my back.

    X-ray, MRI and bam here I am.

    I have been reading the last several pages in this thread and hugs to all for sharing/caring

    I am hopeful that the RO can help with the immediate pain. I hurt a lot most of the time now and not just when sleeping. Pains meds do allow me to sleep in my bed. Woot woot.

    I am sure that I will have questions once I start my first cycle. For now, just wanted to introduce myself and look around for the wisdom you guys all share.

  • intolight
    intolight Member Posts: 2,326
    edited December 2019

    Dodgersgirl, welcome although I am so sorry you have to be here. There are many different scenarios represented here so usually someone can answer your questions. Praying you get pain relief quickly.

  • simone60
    simone60 Member Posts: 952
    edited December 2019

    Dodgersgirl, welcome. Sorry you have to join us though. There are a lot of ladies here that have been doing the ibrance dance for a long time. Everyone is very helpful and will chime in if they can help with something.


  • karenfizedbo15
    karenfizedbo15 Member Posts: 719
    edited December 2019

    Dodgers girl welcome despite not actually wanting to be here very understandably!

    Bevjen hang in there, been there myself re changing treatment and fighting your corner

    Into the light, good to hear from you!

  • SerenitySTAT
    SerenitySTAT Member Posts: 3,534
    edited December 2019
    BevJen - I hope Ibrance continues working for you!

    DodgersGirl - My MO's office helped me contact Pfizer for co-pay assistance. Pfizer worked with my private insurance so that I end up getting Ibrance and Xgeva entirely covered. Hope you get relief from pain soon.
  • dodgersgirl
    dodgersgirl Member Posts: 1,902
    edited December 2019

    SerenitySTAT— thank you for that my info about getting help with costs. Is XGEVA expensive

  • SerenitySTAT
    SerenitySTAT Member Posts: 3,534
    edited December 2019

    In the quote I received, Xgeva costs about 10% of Ibrance. Unfortunately, Ibrance cost is in the thousands (here and US. Xgeva costs 3 times as much as Aromasin. I switched to the generic Exemestane as soon as I could. Good thing Ativan is cheap!

  • GinnyO2
    GinnyO2 Member Posts: 115
    edited December 2019

    Hi Dodgergirl, thankful that you found us but I can only echo what others have said, sad that your here but hoping that you find good support ! I’ve found an enormous amount of support, information and new friendships are blossoming !

    Well, I had a wonderful time off of I/ F for 17 days !! 😁
    Today I went back for my labs and started my 7th cycle but didn’t see Onc..

    Yippie, WBC’s are back in the normal range!
    RBC’s , better but still below the norm.
    My concern is that my Immature gran % has gone way up, from 0.3 at its highest ( within normal range) , to 2.0 !!
    Does anyone know what this is about ??? From what I’m reading, it seems to indicate that there are now more cancer cells in the blood . ? Help !!

    Thoughts ??

  • husband11
    husband11 Member Posts: 1,287
    edited December 2019

    Latest blood test shows my wife has anemia. I'm thinking Ibrance is the most likely culprit.

  • imagine
    imagine Member Posts: 96
    edited December 2019

    Hello All On Ibrance and Falsodex:

    I was recently officially DX with mets to lung, chest wall and a fat pad below the epicardium area. I had VATS surgery to get tissue which was a hell of a surgery (still recovering) on 6 DEC, pathology is metastasis from original BC in 2007, almost 13yrs ago. I am high Er+ My ONC is starting me on falsodex injection on 26 DEC day after Christmas also I take my first Ibrance that day. I'm really scared of the side effects even though I have hope this will help keep my cancer down for a good long while. My ONC says decades with all the new and newer drugs out there. My 1st month co pay is 3315.00 for just Ibrance and then 773.00 a month after that. I jokingly told my hubby to forget about the boat he has wanted for years. LOL just thankful for these drugs. When I was first DX in 2007 they didn't have any of these drugs. Any suggestions, tips would be so appreciated. I heard I should have Zofran on hand in case of nausea. Thanks, Karen


  • chicagoan
    chicagoan Member Posts: 1,026
    edited December 2019

    Hi Imagine-Welcome to the Ibrance dance. The side effects haven't been too bad for most of us. The worst is fatigue (at least for me). My advice is to drink lots of water-aim for 72 ounces/day and to exercise even when you don't feel like it. The other tip-from our friend Pat McG is to eat Greek yoghurt several times a week-even a few spoonfuls to help stave off mouth sores. I've been on Ibrance for 3+ years now and haven't had any real problems with it. I was really scared to start it too but am so glad I did because it has helped to stabilize my cancer. Good luck to you and tell your husband sorry about the boat. Jaycee or others may chime in with ideas to reduce your costs.

  • jaycee49
    jaycee49 Member Posts: 1,264
    edited December 2019

    Imagine, financial assistance is available in various forms. One is directly from Pfizer and the other is from foundations. Both are income dependent. Your MO's office should have talked to you about these possibilities. Maybe they did. If you want more details, PM me. I have never paid anything for Ibrance for almost four years. It is a chore but doable. Most MO's offices help a lot. Yours should, too.

  • simone60
    simone60 Member Posts: 952
    edited December 2019

    Hi Imagine,

    Welcome to the thread. Sorry your here but you've come to the right thread if you have questions. I agree with the others. Ibrance SEs aren't that bad. Fatigue is probably the worse. I used to get really bad canker sores so my MO prescribed a preventive mouth wash (steriod) which I use daily. I haven't had any issues for several months. I recommend biotene toothpaste to help avoid those also.


  • movingsoccermom
    movingsoccermom Member Posts: 164
    edited December 2019

    Hi Imagine. Welcome. Tomorrow I start cycle 8 of I/F. My primary issue has also been fatigue, but I have been struggling with that for almost 3 years, so it's hard to say if it's worse. I lose a little more hair in the shower drain, my skin is over all drier, certain joints hurt more often, and I have become a space cadet (words vanish from my head mid sentence). Having said all that, this combination has been very comfortable compared to Arimidex alone, which literally was blowing my head apart. Hopefully you too will find this a comfortable experience. Best wishes to you.

  • sondraf
    sondraf Member Posts: 1,667
    edited December 2019

    Hey Imagine -

    I am just coming through the end of my first cycle - just finished day 21 yesterday. I had issues mostly with bone and muscle pain in the middle of the cycle, but that subsided by Day 19 and it was manageable (but not super comfortable!) on Advil. I have dry skin, a few itchy patches that appeared near the hairline (they went away), and I had some moderate mouth sores. Someone on another thread suggested Colgate Peroxl mouthwash and that took care of them right away, including a whopper on the side of my tongue yesterday that was not real comfortable. Finally, I also had some digestive issues (the Big D) on days 1,2,4,8, and 12, although the first two or three I would attribute to rads to the pelvic area stirring things up. Oh, and I also had some minor bouts of loss of appetite and very very VERY light nausea, nothing a ginger hard candy couldn't sort out.

    I've got nothing to compare this to as I was de novo, but if two pills in the morning keep me going, that seems like a fair deal. I've had fatigue since June so honestly I can't remember what a non-fatigue day feels like!

  • piggy99
    piggy99 Member Posts: 183
    edited December 2019

    Hi all, just a quick update-last PET/CT still clean with no FDG uptake. MO said that at this point if something was to pop up he would be very inclined to treat locally because he doesn’t think of my situation as typical Stage IV anymore. He also moved my Xgeva every 3 months because “we need to think long term”. I am so overwhelmed with relief and gratitude and I couldn’t have hoped for a better Christmas present! Starting my 25th cycle today.

    I wish you all a wonderful and peaceful holiday season, and a New year with healing and hope. Thank you for being here

  • BevJen
    BevJen Member Posts: 2,341
    edited December 2019

    Piggy,

    Such wonderful news, and such a great Christmas present!!! Yay!

  • chicagoan
    chicagoan Member Posts: 1,026
    edited December 2019

    Piggy-So happy for your news. Good thing you continued with your law studies! Glad you now can think "long term."

  • denny10
    denny10 Member Posts: 421
    edited December 2019

    Piggy, wow, what great news to have before Christmas and thank you for for sharing it and giving us all hope. Enjoy your festivities!

    Wishing everyone here, peace and joy over the holiday and the new year!

  • JACK5IE
    JACK5IE Member Posts: 654
    edited December 2019

    Hello all!

    Imagine...welcome to this thread but sorry you have to be here. I love the optimism your doctor has!

    Piggy...that's wonderful news!

    Sorry for not replying to everyone but going back and reading and then trying to reply is difficult. I'm still still pushing for that quote button!

    Question for those on Ibrance/Faslodex/Xgeva...anyone get chest fluttering/palpitations? I have gotten them before that only lasted seconds but recently I had them that lasted a good 20 minutes. I have an appointment with a cardiologist on Tuesday.


  • airlinegal
    airlinegal Member Posts: 252
    edited December 2019
    To all with good results...really glad for you.....Dodgersgirl..welcome and hope you are successful with these meds...don’t want to wish a long time because we need a cure for all of us...last month could barely put one foot in front of the other...this cycle where did I get all this energy.
    Happy Holidays, Happy Hanukkah, Merry Christmas to you
  • dodgersgirl
    dodgersgirl Member Posts: 1,902
    edited December 2019

    Piggy99– congrats on your great scan results and long term thinking by the doctor.

    Airlinegal— your post also gives me hope that Ibrance may do the same for me.


  • movingsoccermom
    movingsoccermom Member Posts: 164
    edited December 2019

    YAY Piggy!!!!

  • sondraf
    sondraf Member Posts: 1,667
    edited December 2019

    Piggy - that is awesome and a good reason to keep reaching for our goals huh? :) Were you oglio at the start or widespread mets? I note that your stats are similar to Rosie24 in when you both started and response and she is also getting that 'long term' consideration too.

    Jacksie -I am on two of those three and I had a few extra flutters in the first week(beyond normal for me), but nothing since and none of my episodes lasted more than five minutes. There was one episode where I woke up in the middle of the night where it felt almost like my heart had 'flipped' - I dont know how else to explain it. It is on my list to raise with the MO next time. I dont mind a few flutters in the day but waking up in the middle of the night was more than a bit concerning!

  • imagine
    imagine Member Posts: 96
    edited December 2019

    piggy

    That is fantastic news!!! I’m so happy for you that is amazing! You have got to walking on air. Oh I hope one day that will be me! I have chest and lung Mets so maybe not but I can still hope. Have a great holiday!!! Love hearing the good news