Ibrance (Palbociclib)

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  • Penny-78
    Penny-78 Member Posts: 271
    edited October 2018

    Waaaay behind in my posting. Hope you all don't mind a few random replies that I meant to post a day or two ago!

    LA894, we all love to hear hope and optimism. Thanks! And congratulations! So glad for you.

    Lauren, your little goalie is *fabulous*! What a sweet picture. That really made me smile.

    Crazeejane, I hope you've continued on an upswing. I was also diagnosed de novo, going on two years ago. My DH and I had done cargiving and home-hospice for both my Mom and sister for nearly three brutal nigthmarish years, and after many months of trying to recover I felt like I was finally starting to breathe again. I felt like I could *finally* focus on my two beautiful kids, and perhaps eventually even get back to work full-time. And then this hit me. I didn't think I could go on. I couldn't imagine fighting this fight myself.

    But I did. And I am. I'm doing well. It ain't always easy, but I'm finding joy in every day. You probably can't imagine it now, but I believe you'll get here too. :-)

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

    Every new drug is a step toward a cure for each type of BC. PARP Inhibitor approved.

    https://www.fda.gov/Drugs/InformationOnDrugs/Appro...

  • Penny-78
    Penny-78 Member Posts: 271
    edited October 2018

    Thanks Pat!

    Just watched the video you posted yesterday. Thanks for that too! Just to add a bit (and sorry if I'm repeating myself) but last year, when there was false alarm it looked like I might have already progressed on I/L my MO suggested that I enroll in a trial of Falsodex with Ribociclib. I have a feeling our friend Cure-ious will know more about this, but I believe there has been some evidence that there can be some benefit from switching CDK4/6 inhibitors in combo with F in the second line.

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

    Friends, I'm helping to plan an MBC support/educational group here in Memphis for a BC charity. I facilitated support groups for a couple of decades but never one specifically for MBC. Please share your ideas about the type group you would find helpful. Maybe we'll come up with something wonderful that can spread around the world!

    Love from PatGMc

  • cure-ious
    cure-ious Member Posts: 2,869
    edited October 2018

    Pat, Can I say it again?- you are amazing. Really.I might fly to Mephis just to be in your group.

  • WANDERING
    WANDERING Member Posts: 197
    edited October 2018

    Pat: We are working on a cancer support group In Helena Montana. We will be a chapter of cancersupportmontana.org located in Bozeman, Montana. This group is a non profit organization part of a national organization. They have a large website which might be beneficial to your project. Our group is not focused on MBC. There are only two out of 90 that have MBC. Don't know if we will be able to raise funds for our chapter. We have a meeting tomorrow with the person who started the Bozeman chapter and has been very instrumental in fundraising. They have some interesting ideas for fundraising, i.e. a stationary bike "ride". Our town only has about 40,000 residents so not sure how successful we will be in raising money for our chapter.

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

    Cure-ious, come on! I wish all of you could...What fun we'd have!

    Wandering, this group will be done with a grant from Pfizer to Susan G. Komen in Memphis. We're pretty confident my cancer center will provide space and food. If I were you, I'd contact Pfizer and see if there's money left in their pot! I learned a long time ago that the way to get money is just to keep asking until someone is happy to say, "Yes." I also learned that you can do a lot without a bunch of money.

    Love from PatGMc

  • jaycee49
    jaycee49 Member Posts: 1,264
    edited October 2018

    Pat, I just posted the Edie Wadsworth eulogy of her aunt to my MS forum and sent it separately to my MS friend who has an adult daughter with CP. I know she will love it. Thank you for posting it. I don't remember who said they have to think about buying clothes because who knows how long we will be here to wear them. I'm on a clothes buying jag and enjoying it immensely. Why not?

  • sandibeach57
    sandibeach57 Member Posts: 1,387
    edited October 2018

    I gave away a lot of my clothes.. didn't want to burden my daughter with that task. Two years later, I am buying new stuff. Why not indeed Jaycee49.

  • intolight
    intolight Member Posts: 2,338
    edited October 2018

    I gave away almost all of my business/work clothes (more than half of all) and am replacing them with only what I really want and will wear... slowly. (Also, most didn't fit anymore!) I purged my closet and am adding shelves and new doors next month. It will be way more useful for the way I live now. It is all about cleaning out and doing away with excess, and making living easier for me. I downsized when we moved back to Cali before my dx, and in many ways now I am thankful I did.

  • Crazeejane
    Crazeejane Member Posts: 47
    edited October 2018

    This is my oldest daughter and I. When I found out I was stage IV I decided to get a cancer ribbon tattoo and my daughter decided that for her very first tattoo she would like one too. We had her Senior Pics taken yesterday by my Aunt and she thought it would be a great idea to take one of the both of us together. I think it turned out wonderful. This is one of the reasons that I fight this dreadful disease. It's for moments like these that are priceless!! I just wanted to share!!image

  • MuddlingThrough
    MuddlingThrough Member Posts: 655
    edited October 2018

    Great photo Crazeejane!

  • Penny-78
    Penny-78 Member Posts: 271
    edited October 2018

    Crazeejane, that photo makes my heart sing. :-)

    When I collapsed two years ago, and ultimately got my diagnosis after weeks of misery and testing, my twins had just started high school. They initally warned me from the hospital that I might never make it home again. My heart was in shreds at the thought at the thought that I would miss their high school years.

    So far, we've had two years packed with fun and full of joy.

    My daughter goes for her Junior Class photos next week! (Our daughters look quite a bit alike!)

  • Crazeejane
    Crazeejane Member Posts: 47
    edited October 2018

    Penny-78- Kids are just great aren’t they? Twins would be so fun and I’m sure you enjoy every moment. This will be my second graduate as my oldest son was last year and is now in college. After this one I have a 3 year break with 4 more to go after that. My youngest is a 4th grader so I have a long ways to go yet but I will cherish every bit of it

  • twinklecat
    twinklecat Member Posts: 31
    edited October 2018

    OK -- I have a complicated question for the experienced Ibrance-dancers....

    I am scheduled to have an endoscopy procedure on November 9 (not directly related to my BC), and I am not to have any food or drink after midnight. It is OK for me to take my regular medications with a small sip of water.

    Here is my dilemma: it will be day 19 of my Ibrance cycle, and I take it in the morning. I should explain: the reason I take my meds in the morning is because I get up at the same time every day, and I am a breakfast eater. I am very inconsistent about taking medications later in the day. I get very intensely focused on what I am doing and I just forget.

    The way I see it, there are a few options:

    1) take it at my regular time on an empty stomach

    2) take it 7-8 hours late, after my procedure is over

    3) skip it

    4) take it at dinner time for this upcoming cycle

    I'm not considering option 3, by the way -- I only included it for the sake of completeness. The other options all have pluses and minuses...

    Has anyone else had this issue? If so, what did you do?

    THANKS!

  • LoveFromPhilly
    LoveFromPhilly Member Posts: 1,019
    edited October 2018

    Hi twinklecat!

    I have had to skip a couple doses here and there and have also forgotten a dose.

    My protocol is to always call my MO and let them know my dilemma and then let them figure it out for me.

    Takes the trouble out of my brain and lets them do their job :-) and I don’t have to think too hard, which I love!

    And I don’t think missing a day is a huge deal :

    Good luck with your endoscopy!

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

    Twinklecat, I don't think missing a day is a big deal. I discovered tonight that I had obviously taken my AI and Ibrance twice in one day this month. Yikes! That bothers me more than missing one! I hope the results from your endoscopy tell you what you need to know.

    Penny, Crazeejane and others who have children still at home, it breaks my heart to know how much scarier this is for you than for those of us whose children are grown. During all my years at the support center I remember the thing that always brought people to tears was talking about what their children would do without them. I wish you could meet all my friends who cried those tears yet lived to see them graduate and have babies of their own! I pray special prayers that each of you in this group get to do that too. Crazeejane, your daughter is lovely. (You obviously don't mind needles as much as I do!)

    Those of you shopping for new clothes, enjoy! My daughter is helping me sort out and give away lots of stuff collected over 50 years of marriage and 42 in this house. We started this a few years ago and she's back at it tomorrow. We've especially had fun giving away household stuff and furniture. Our house is the turn-around street for the elementary school so Amber lines the giveaways along the curb and the young moms stop and shop. Between the neighbors and moms it gets cleaned out within an hour!

    I'm glad you enjoyed Edie's words. She wrote an excellent book about her difficult childhood. Can't remember the name but you can find it on Amazon.

    Love from PatGMc


  • sandibeach57
    sandibeach57 Member Posts: 1,387
    edited October 2018

    Hi Twinklecat, I delay taking my Ibrance when I have morning scans..for me, that can be up to 6 hours. I just like taking it with food.

  • husband11
    husband11 Member Posts: 1,287
    edited October 2018

    Twinklecat,

    Ibrance is recommended to be taken with food, because food stimulates stomach acid, and stomach acid improves the absorption of ibrance. There is some variation in the blood levels of some people, when they take it with food vs without. The effect varies from person to person. Over the long term, the difference could be significant for some people, if they took it on an empty stomach all the time vs not. For you, for one time, the long term implications would likely be negligible.

    As well, the half life of ibrance is approx 29 hours. That means it sticks around in the system for several days, and it takes over a day for you to eliminate half of it. That again suggests that minor variations in the time you take it would not be of great impact. Especially if its only a one off.

    I'm not a medical person, so this is just my opinion, but it is based on the data published by the drug maker.

    If you skip a day, you will have only approx 1/4 of the level that you would have if you took it daily, so that may not be the best option, but some minor variation in the time you take it, or the amount absorbed because you took it on an empty stomach, would have far less impact.

    The bottom line is, don't sweat it.

  • time-for-a-cure
    time-for-a-cure Member Posts: 67
    edited October 2018

    since the half-life of Ibrance is 29 hours, it will reach a steady state in about 7-8 days. After that , timing is not as important. Missing one dose wont have much impact, especially on day 19. It will still clear your body in approximately the same time. If it were me, I would take the dose with my next meal after the procedure, then go back to my regular schedule. But I think skipping the dose is also a viable alternative. I would not take it on an empty stomach, it just isn’t absorbed and would be a wasted pill. My 2 cen

  • LaurenH
    LaurenH Member Posts: 382
    edited October 2018

    CrazyJane - I love your photo and your new tattoos! How awesome that your daughter shared that with you. So did I add this up right? You have 6 kids? BLESS YOU!!!! I can barely keep up with the one I've got.

    And I'm with Jaycee - I've been buying new clothes like a crazy person. I don't ponder purchases much any more. If I like, I buy it. I desperately need to do the purge thing though... I'm horrible at that!

    Pat - I will think about your support group.... I have a group here in Pittsburgh and we get lots of presenters from the medical community for things like chemo brain and lymphedema to come and meet with a smallish group and we are able to do a lot of Q & A. If the group is just starting up and no one knows each other, I recently used a "speed dating" concept at a work event. (where you meet 1 on 1 with every person in the group for a time limited period - like 5 minutes, focused on a specific topic or to generate ideas). It was super fun!

  • husband11
    husband11 Member Posts: 1,287
    edited October 2018

    Here is a summation of the study done on the influence of food on palbociclib absorption. From the monograph:

    Administration in a fasting state decreased absorption and systemic exposure in approximately 13% of patients.1 Systemic exposure increased when drug was administered with food in these individuals; no effect on systemic exposure in other individuals.1 Administration with food reduces interindividual variability in systemic exposure.

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

    Twinkle, I had the same dilemma when I got my PET a couple of weeks ago. I take my Ibrance after breakfast every morning. I took it at the same time on the morning of the scan without food so as to be on my regular schedule (what a surprise, Jaycee!!). It's helpful to see the medical info on that....thanks, Husband and Time for a Cure!

  • twinklecat
    twinklecat Member Posts: 31
    edited October 2018

    Thanks, everyone, for your input! I also read the same pharmacokinetic info and figured it is probably OK to take it late or on an empty stomach... especially so late in the cycle. I have an appointment with my MO next week, so I will ask her.

    JoynerL -- did it upset your stomach to take without food?

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

    Twinkle, no, not at all. But, it has never upset my stomach, so I may not be a good sample.

  • LaurenH
    LaurenH Member Posts: 382
    edited October 2018

    Twinkle - I took it at bedtime with no food at all for at least a full cycle until I learned here that I was supposed to take it with food. It has never upset my stomach, like Joyner, but I started adding a small amount of food when I learned the fat breakdown made it actually work better. (I take all of my meds at night though - because that's the best time for me - I'm always rushing off to an early meeting in the morning!)

  • Crazeejane
    Crazeejane Member Posts: 47
    edited October 2018

    LaurenH yes I have 6 children. 3 boys and 3 girls, ages are 19,17,15,14,13, and 9. 5 are my natural born children and I have a step son that I have legally adopted as well. Lots of teenagers so my stress level is pretty high at times. However I wouldn’t change it for anything as they are pretty great and such a blessing.

    Question for all of you.....does anyone else seem to be more emotional on their off week from the Ibrance? I was so weepy and sad.....just wondering if anyone else has had this happen or if it’s just me. Also has anyone had more SE’s the longer you are on it? My first cycle I had no nausea but this time around I have had some off and on it seems, plus I’ve had some pain in the breast that has the tumors which has never happened before. Thanks for any information you can give me

  • LaurenH
    LaurenH Member Posts: 382
    edited October 2018

    Wow CrazeeJane! I’m so impressed with your stamina, given you are raising 6 kids, mostly teens, through all of this. You have my deep admiration!

    I have found my week off is the worst for me in a lot of ways. Back when I used to to get a rash, it only came during the week off. My fatigue is also tough that week. None of this makes sense to me and seemed to surprise my medical team.

    As far as pain in your breast tumors, from what I have read here and elsewhere, I think that’s really good news! It typically means the tumor is being impacted by the meds and that’s what’s causing the pain. So if there is such a thing as good pain, I think this might be it!

  • Crazeejane
    Crazeejane Member Posts: 47
    edited October 2018

    Lauren H- Speaking of a rash, was it like tiny bumps like pimples?? I noticed on my left arm I had a bunch of these little spots but no where else. As for the pain, glad to hear it could be a very good sign as I don’t have a scan till December to find out if the meds are doing their job. Thanks for the information. As for the stamina of being a mom of 6, that is exactly while I am constantly saying that I just don’t have time for this cancer nonsense! I just have too much going on lol. It definitely makes me fight a little harder to overcome certain SE’s that’s for sure

  • jaycee49
    jaycee49 Member Posts: 1,264
    edited October 2018

    Twinkle, I would delay the dose until your first meal. I never take any meds without food unless specifically told to do so. Finally caught Joyner breaking a rule. You took Ibrance without food? Shame, shame.

    I wish I had the energy or motivation to clean out all my old clothes. That is definitely on a to-do list. I have no room for the new stuff I am buying and it is all piling up on my dresser. These new clothes include something I have just discovered is ok for old women to wear: leggings. Talk about pajama pants. And today, I even wore a pair out of the house. The big problem with them is that they have no pockets, right? I found some with pockets and am collecting tops, sweaters and sweatshirts with pockets to wear with no pocket leggings.

    Crazeejane, that photo is lovely. I can't imagine that sweet girl fighting with her siblings. It must be the other ones. Especially the BOYS.