Ibrance (Palbociclib)
Comments
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Hi Stllivin -- I take Ibrance in the morning with my oatmeal. I've always been a morning pill taker, since I am a breakfast eater (I totally do not understand people who skip breakfast! It is seriously THE FIRST thing I do when I get up), and I usually get up around the same time each day. The rest of the day is usually pretty hectic for me, so I've never been able to get into a consistent routine with medications later in the day.
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Dee, I wish you the best on your new protocol and hope your side effects are manageable.You might want to talk with people here about Y90 for the liver lesion.
Love to you from PatGMc
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Pat, that's what I heard too which is why I take mine with dinner. Fat in the morning just doesn't fit with me...
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I take mine in the morning with breakfast. I have always been a breakfast eater and so I just go ahead and take the Letrozole and Ibrance then. Also I am home in the morning so I don't have to pack the meds for another meal where I would be out somewhere. I hadn't heard about the "fat" food thing, just supposed to take with "food".
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I take mine in the morning, too, right after breakfast. Just Ibrance. The specialty pharmacy specified to take with food but never mentioned fat. I usually have yogurt or cottage cheese or almond milk, so I guess I've had some fat anyway.
Another question: I love Deep Eddy's pink grapefruit vodka. I gave it up because of Ibrance. Do you suppose I could have it on my week off or not?
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I too take my Ibrance and Letrozole in the morning with breakfast because if I didn’t do it then, I would forget. I never used to be a breakfast eater but I sure do now. It’s actually a nice time to reflect on my plans for the day.
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Dee it's great to see you!! I was just posting somewhere that at least one person on Alpelisib and Faslodex combo has been on it for four years now!! Also, what happens is your body reacts to the drug by driving up your blood sugar, which is not good for you and effectively allows the cancer to escape the effect of the drug- SO, they found that the drug will work way better if you keep your blood sugar low as possible, eating less sugar straight off, but also giving yourself an extra couple of hours at night with no food (since so many foods are converted to sugar), just water, so your body can more efficiently burn off the sugar that was consumed that day... There is a new thread for this drug, hope you can find time to post on there what your experience is with it..
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I love Edie Wadsworth and have been reading her blog for years. I loved the eulogy she gave for her aunt this week and thought you might also like its message:
Let's write our stories, Big, Bold and Courageous!
I got a call last Sunday from cousin Jamie. She said Aunt Darlene probably wouldn't make it through the night.
The hour that I drove to get there took forever. It felt eerily similar to a drive I made 21 years ago, the night Daddy died.
When I walked in her breathing was labored with some pauses.
But she hung on.
Until Wednesday.
My sister called at 6:30 and said it looked like she wouldn't last the morning.
Again, I made the drive, but this time I didn't make it in time.
She died as the sun rose, wearing a bright turquoise floral dress and a stack of shiny bracelets on her right arm.
My daddy's baby sister, plagued her whole life with the frustrations and limitations of living with cerebral palsy, finally at peace in glory.
Aunt Glenda, sister, and cousin Jeff and I stayed in her room until the nurses needed to prepare her body to leave—crying and talking and laughing, remembering her life and trying to make peace with saying goodbye.
This week has been so surreal, making funeral arrangements and driving a lot and thinking about this FLASH of time we call life— bookended with picking up Thomas and making the best of a hard few days.
I'm giving the eulogy at the funeral this afternoon and by the time you read this email, we will have said our last goodbyes to someone whose life was harder than most and whose passing will be felt by precious few.
But the lessons she is teaching me keep on coming.Here's what I wrote about her:
*****************
She was 67 yesterday when she went home to be with Jesus—my sister and her sister by her side.She never married and never had children. She never drove a car or owned a home or made a meal.
She never learned to roller skate or ride a bike or throw a frisbee and she never twirled in a poofy dress under the moonlight.
She didn't graduate from high school or go to prom or get her license or take dance lessons or learn to water ski.
She never knew the simple pleasure of going for a hike in the mountains or swimming in the river.
She grew up poor and was often surrounded by heartache.
She knew loss and grief and frustration well.
But perhaps her deepest wound was the loneliness of never being fully heard and understood, of never being fully able to articulate herself, of living her whole life defined by her disability.
Cerebral palsy robbed her of running and jumping and playing in the creek. It took her words from her and made her feel alone and different. But what it didn't take from her was her fire. What it could never quench was her desire to know her Creator and to live out her life as His dear child.
She never stopped hungering for truth.
She never let the wheelchair be the deciding factor for where she could go. She's always been fierce.
She didn't let living in a nursing home stop her from wearing her cocktail dresses and her statement necklaces. She refused to stop laughing and eating steak and buying unreasonable boots and wearing too many shiny bracelets on her arm.
She refused to stop shopping at Forever 21 and she never met a bejeweled headband that she didn't like. She never really stopped fighting and trying to be heard.
She was brilliant with dates and names and remembered EVERYTHING. She was smarter than any of us.
She taught me so much about gratitude without ever saying a word. I almost never go for a run or drive a car or give a talk that I don't remember what a privilege it is to do it.
She is my aunt Darlene, my Daddy's little sister, my mentor in thankfulness, my favorite statement jewelry wearing relative, my teacher, and the one cornerstone of our family that I can't imagine being gone.
She died as the sun was coming up wearing a bright turquoise floral dress and a stack of pretty bracelets on her right arm.
Here's what Aunt Darlene would say if her Cerebral Palsy hadn't rendered her speech almost incomprehensible:
Life is short and sometimes brutal. Live it big anyway.
Time will run out faster than you think.
The smallest things will bring you joy, so don't discount them. Things like juicy fruit gum and old gospel eight track tapes and wedge sandals and real Coke.
Sing loud to the music. Wear the statement necklace and the wedge sandals. Wear them even in the nursing home. Wear them no matter what people say.
Don't wait for a special occasion.
TODAY IS THE ONLY SPECIAL OCCASION YOU'VE BEEN GIVEN.
TODAY IS THE DAY FOR THINGS THAT BRING YOU JOY.
WEAR the necklace and remember that if you can walk and talk and breathe in oxygen, you are blessed indeed.
And if you can't walk and talk like you want, be grateful anyway. Cling to Jesus, our only hope and peace. He loves you and He will never forsake you.
Don't take one step or one word or one breath for granted.
❤️❤️❤️😭😭😭
Rest in Jesus, my beautiful warrior princess. I'm sure you are taking heaven by storm. You will be greatly missed.
****************
It makes me EVER MORE determined to live my best, beautiful life—to say what needs to be said, to LOVE with all my heart, to serve and bless the people I can, to say YES to a wide open and sometimes brutal life.
That is what we are here to do.
You woke up today so you still have the chance to write your story BIG, BOLD, and COURAGEOUS.
If we were telling your story to your grandchildren or giving the eulogy at your funeral, do you like the story we'd be telling? Would you continue to hold those grudges, to put off that forgiveness, to stay stuck in old wounds and resentments, to continue to obsess and worry over things you can't control instead of fixing the things you can? Would you be proud of how you loved and sacrificed and just WENT FOR IT? Someone IS writing your story and that someone is YOU. WRITE IT LIKE YOU MEAN IT.
Stop playing small, stop numbing yourself to hard things, stop waiting for next Monday or next year to roll around.
YOU ONLY HAVE TODAY. Make it count, mama.
All my love,
edie0 -
PatGMc
Thanks for posting that moving eulogy. There is so much wisdom and inspiration to be found in it, I saved it to read and ponder more.
I think my favorite part is "She refused to stop shopping at Forever 21 and she never met a bejeweled headband that she didn't like. She never really stopped fighting and trying to be heard." I remember a few years ago I ordered online a bunch of colorful fanciful tops (and underwear) from Forever21 and I guess it was such an odd purchase for someone my age that the credit card company actually contacted me and asked if those were my purchases or had my card been hijacked. lol No, it's me, buying and wearing youthful bright and happy tops that I need at this age more than I ever did when I was younger. Not for me the head to toe tasteful beige look that many older people adopt (not knocking it for those who like that look, it's just not me.) I haven't worn some of those tops much, I haven't cared lately about how I have looked, have schlepped around in old clothes, depressed. Lately I have stopped buying any new clothes or shoes; I think, "is it worth it? will I even be alive long enough that I should buy this?" That needs to change. Like it says, each day is worth fighting for.
Amica
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Amica, I'm sorry I didn't make it clear that this is the aunt of Edie Wadsworth and she gave this obituary.
Let's see your picture in one of your Forever 21 tops! You go, girl! It also made me think about how many days I spend in pajama pants and t-shirts!
Love from PatG
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Oh OK, thanks ! oops, I'll correct it.
You were clear, I read that part too fast and missed it.and I just saved Edie Wadsworth's site, it looks awesome!
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GG. Thirty months is a good run for IL. But I'm sure you're not feeling too great about that blasted liver met. I don't know much about the trial you are on. I do know a little about radioembolization for liver mets. Mine was done with SIR Spheres y90. If you want more information let me know. I've gotten eighteen months from it.
Joyner I read that IL has a half life that keeps it in our system for a whole week! In other words our week off is not a real week off. No grapefruit juice for me, I love it too.
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morning all!
At this point they won't talk about doing anything to the liver met(s) scan 2 months ago showed 1 met & 1 benign tumour, scan 2 weeks ago they talked about 2 mets, so I'm not sure but no radiation or Y90, I asked. I guess the thinking is that the new trial should take care of them & then if not, we will revisit.
I will know more after tomorrow's appt. The past 2 weeks have been a whirlwind as the ct found a blood clot beside my port line so have been injecting myself with heparin every day, they were more concerned about that than a couple of dinky liver mets.
cheers to all, dee
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hello there,,haven't been on in a while..hope all is well...got almost 3 months in with ibrance and letrozole,,feeling super! just a little hair thinning,but not much...I had my bloodwork for my routine clestrohol and it was amazing dr said,,sure surprise me since I hadn't been watching my diet real close,,he was amazed,,,and the only thing I can think of is maybe the ibrance/letrozole combo helped keep my numbers low and where they should be...has anyone else ever had these results while taking ibrance/letrozole?..
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they told me it take about 40 mins for the sugar solution to go thru your body and yes the rooms are small,cold and they recline you in a chair,offer blankets,no reading in the one I go to,,and ive had many...then they let you use restroom,then the actual scan take about 25 mins,,a little warmer,lie very still...
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I also take my ibrance/letrozole with breakfast in the morning,,i never was a breakfast eater,,but I am now..lol...gotta have something in my belly when I take it...and I eat every 3/4 hours during the day to keep the nausea away..even if its just a few bites of something,,it sure helps keep my belly happy...
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I was tired the first week I was on ibrance/letrozole...and im on my third cycle now and the tiredness has left up a lot,,yea some days I can nap for a hour,,but not everyday...hope your body gets used to it soon..keep us posted...
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Hi,
Feels a bit ego but I must share. Before I got my BMC 2,5 years ago, I trained on regular basis. When I got my dx I ended my gym card and have only been doing walks (10000 steps a day). Don't think I'm this well fitted well trained lady, I never been. Always been a bit o heavy but I've been strong and used to exercise and just dropped it. I've have been hating my body because it fouls me with this disease.Today I friend got me to the gym. I cried of anxiety in my car to the gym. But I went in and did my weight training and I was not in that poor condition as I thought. This was the first but not the last time :-D
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Good luck, GG!
Josalo, you GO girl!! What a great feeling that must have been!
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I haven't watched this yet but knew I would forget to send it if I waited. About interchangeability of CDK4/6 Inhibitors:
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Thank you to all who responded about taking Ibrance with breakfast. I’m going to give it a try and I’ll add some almonds for good measure (fat). I really appreciate having this great group to get feedback from when I have a concern. Praying for us all.
Suzy
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Suzy...we were hoping for bacon...with a side of butter!
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That sounds soooo much better!!!! 😋
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Pat, thanks for the link. I find all of this so confusing, and it was very helpful to listen to the Stanford (I think) doctor discuss his own thoughts and his practice with regard to the CDK4/6 inhibitors. I knew that the three drugs mentioned were in the same class but didn't know whether they were used serially or not. So interesting to hear his take on it and his thoughts on possible next steps.
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PatgMcR.....thanks for posting that fantastic eulogy. I've kinda taken what I want from it and I'm going to remember it. Live big and dream big. Don't let anything stand in your way. We're all here to make our mark in the world whatever way we can. I know that's quite different from the actual wording but I'm going to make a meme and use it because that has resonated with me!
I had quite a showdown with my poor husband on Saturday. He's so used to having a meek compliant little wife because I've been giving in the last few years from sheer weakness and fatigue. Well, no more! I'm making this apartment into a home more each day and I love living here. My friends can pop in any time. One friend who has SIX SONS has had them all move out with their wives and girlfriends one after the other this year and finds herself an empty nester for the first time in 41 years! She's so conflicted. She was looking forward to having time to do the sewing that she loves but yesterday, the first day of being alone, she called me at midday and asked if she could come over and make my lunch for me or do anything else I wanted! As it turned out my back has been painful since the ultrasound I had last Thursday so I have a strong feeling the angels had something to do with that as I was creeping around the kitchen telling myself, "I CAN do this" (make lunch) while know that I couldn't!
I know this has nothing whatsoever to do with cancer but it has a lot to do with why we're here and what the purpose of our life is and a few other existential questions, many of which I've been asking myself over the last 2 months since I left home. The way I see it lately (and this could change in a flash as we all know because mood changes and Ibrance go hand in hand) is that cancer actually set me free from a toxic situation. If I hadn't got cancer I would have carried on with my heedless life obeying my husband's orders but fortunately I've climbed a high enough hill to see the sunlight now that the treatment has me stable and I intend to live the Ibrance Dance as Pat calls it for at least another 12 years and during that time I'll live big and dream big and no one will stop me!
On a more practical, less philosophical note, I just found this in a journal I was reading.
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SanJF and Seaway,
I do not have lung mets (that we know of...one lesion we have been watching is enlarging though...).
Why I am writing is just a possible connection...food for thought so to speak.
Last year before stage IV dx, I had a similar, unrelenting cough with vomiting. I got immunotherapy drops from ENT and inhaler from fam practice Dr. Nothing. 5 mos of no sleep, severe hoarseness and no improvement.
I was finally referred to a speech pathologist who diagnosed me immediately in the 1st visit. He said on average it takes 5 medical professionals before patients make it to him with this condition: PARADOXICAL VOCAL FOLD MOTION DISORDER.
It is treated with breathing exercises. Mine was exacerbated by reflux and severe stress from work. Very possibly I had it my whole life, looking back at my coughing history.
While I am a board-certified periodontist, this is obviously not my area of expertise. But it worth asking the question to get checked out to rule it out. He scoped my vocal cords and told me right away - yes this is what you have and here is what we r going to do about it...
And everything we did with the bresthing exercises worked. I no longer have this problem.
Just throwing this out there as something to consider...it could be happening on top of everything else you/we are dealing with.
Prayers for you...
Gumdoctor
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Gumdoctor;
Thanks a lot. I'll check it out. My runny nose has been going on for years now. It was also something my father had so I just assumed, as did my PCP that it was an allergic reaction. I take nothing for it as I really didn't want to take any more pills. If this is something that could be resolved with exercise I would be thrilled.
Cathy
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I also have a port and they will use it for ct scan but not for pet scan...it doesn't matter to me which they use..
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Ladies,
has anyone experienced sudden rising of triglycerides on Ibrance? Also, does anyone know anything about taking meds to lower them in combination with it?
Daniel
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buzzy, They wouldn't use my port for the PET until one day a nurse said if I had a Power Port they could. Turns out I do have one and now they use it. It may be that your radiology clinic doesn't have anyone who can access yours.
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