Ibrance (Palbociclib)
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what is the best time to take Ibrance??
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Whatever time you remember it. Seriously, I don’t think it makes a difference, I take it in am with the rest of the morning meds.
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Hi all!
Sugarbaker, my onc wants me to take it at the same time every day. It works best for me to take it around 8pm and I keep the weekly pack in my purse. I started Ibrance pre-covid and found that we were away from home often (fall/holiday 2019). I have tried morning, and dinner time but 8pm seems easiest for me AND I have to set an alarm on my iphone. We eat dinner late (around 7) so I am not taking it on an empty stomach, etc.
RRabbit - hope you had a wonderful anniversary weekend celebration! Congratulations:)
Candy - I am so sorry to hear about your sister. Of course, take care of your self too - remember... on a plane oxygen mask on you first, then help your sister. It is a lot to deal with and I send you love and strength.
RK2020 - I am sorry about the cancer center limbo - it is so frustrating at times to be US, as we are waiting for their expertise but COME ON! They need to get your scans and read them.
SF-Cakes - my heart goes out to you, too. It is a LOT to you both you and your husband stage IV. Hope you have had a good week.
Jack5ie - how are you? Anyone heard from her? Sending her love.
Prariesea - I am happy to hear you went on vacation and hope it was a blast! Hope your oncologist meeting goes well.
RosieRed - I have not been nauseous on Ibrance but I rarely get nausea.
Jaycee. Such a big loss. I appreciated her so much, she was really helpful, no nonsense and I admire all she did to get New Mexico to pass a bill for End of Life/ right to die. It passed just a few months ago. Sending all who know her my love and prayers.
Nothing new with me, still hasn't rained in the Seattle area for over 46 days! Everyone seems edgy and dare I say "bitchy" and I feel like a nice cool marine breeze with some rain would seriously help! Maybe it's me:) As Covid numbers are rising, so is a bit of anxiety. I am vaccinated but really don't want to get the Delta variant. I am still working quite a bit but started wearing a mask when indoors (stores, showing property etc).
Hope everyone is doing well!
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Hello Ibrance Dancers!
So sorry to learn of Jaycee... she was an inspiration to us all.
Candy - I was on olaparib for 20 months with no ill effects. Just got a little nauseous when I first started taking it, but that went away pretty quickly. I was on it from June 2019 to March 2021 until I progressed.
In my opinion, it was easier than Ibrance. April and Ciaci - yay for good scans.
Just a quick note... after progressing on olaparib in March, I was quickly moved to carboplatin+gemcitabine+keytruda. I was on that until two weeks ago. I just got out of the hospital - I had pneumonia and a chest tube was placed in my body to remove the pleural fluid which had become loculated. A scan on Monday shows that I am progressing still (more lymph nodes getting bigger and pleural lining is now at 12mm). So now I am moving on to Trodelvy. Hopefully that will help get me stable.
I wish all the best for you Ibrance dancers and continue to follow you, even though I don't post.
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Hollyli- you have been on my mind, sorry I missed you on my post! I am thankful you checked in and I am sorry you were in the hospital and had a progression. Sending you love and prayers that Trodelvy is the ONE to knock the cancer to oblivion. Please continue to give us updates when you can.
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Cure-ious and BlueGirlRedState - thank you for your responses. Hip x-ray showed no need for radiation, so I guess we'll just wait for next PET scan to see how things are going. I assume at that time I will need to switch to Piqray, but I hope against hope that I will be able to continue with Ibrance. It's my first progression and I was truly hoping to be one of the lucky ones that get 5 years out of Ibrance.
BlueGirl - yes, Piqray targets the PIK3CA mutation.
I was sorry to hear about Jaycee. She's been a contributor for a good long while.
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Holly, 20 mos on Olaparib is great- what subtype of MBC do you have? BRCA mutant?
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cureious - at initial dx in 2012 (age 35), I was ER+ HER2- and BRCA2+. When I became MBC in 2019, I was still ER+ (70%) and started on ibrance/fulvestrant. That killed all the hormone positive cancer. But in June 2019, a second biopsy was done and it was TNBC and I was started on olaparib. I do carry the pik3 (is that it?) mutation. But I think all those therapies are for HR positive people. I think olaparib was a great treatment for me. I could feel one of my palpable lymph nodes get smaller within a week of starting it. I just wish there were more tnbc treatments out there
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To All,
I completed 2 weeks of 125 Ibrance and was so sick to my stomach and faint.
I am getting a lower dose now. The doctor gave me samples but now I will have to pay at pharmacy.
Can anyone direct me to how and where I can get Ibrance at a reasonable price. I am on Medicare and blue shield supplemental.
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Contact your MO office, they should be able to help you get it free, or less than $100 month. My MO did it for me, I have $0.00 copay. I don’t think regular pharmacy carry this, CVSetc.
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Holli, Trodelvy is a great drug, and hopefully you get a long time on it! Leronlimab (CCR5 antibody) in combination with chemo is also looking good for TNBC, but agreed, much more is needed..
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Positive2strong, pfizer has copay assistance. I initially got my ibrance through CVS speciality pharmacy and they helped me get that. I pay $0 for my ibrance. You could probably call Pfizer if your MO can't help.
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Positive, I, too, pay nothing for my Ibrance. I started with one specialty pharmacy (can't remember which one), but they called me, set it up and got my $75.00 co-pay covered with the Pfizer assistance program. Now I'm with another specialty pharmacy and I still have the co-pay covered.
I tried having it delivered to my house, but when UPS tossed the package on my porch without ringing the doorbell I switched to having it delivered to a local CVS. If I hadn't seen it on my security camera, it would have sat in the sun or been snatched by a porch pirate.
I do call the specialty pharmacy each month just to make sure I don't have a big co-pay. They always have a list of questions related to the medication, but overall it's a pretty easy process.
BTW, don't you all think it's funny that the word Ibrance gets marked as a possible mis-spelling? What's with that?
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Positive2strong, start here:
https://www.ibrance.com/financial-support-resource...
There is a phone number about 2/3 of the way down. Call and tell them you're on Medicare, and which supplement you have. Explain about the dose reduction. They'll take care of you.
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Holly- good to see you check in tho I'm sorry to hear you just got out of the hospital. My goodness on all you've been through. I'm glad they were able to get rid of the pneumonia and the pleural effusion for you. Come on Trodelvy, work your magic!
Cakes- I do not know how you do it, both you and DH at Stage IV, but you've quickly become a favorite of mine
Spookie, I don't know how you did it either, but I think of you often too as you pick up pieces.RK- isn't amazing how centers become stupid when they make mistakes? Isn't it odd we have to go Cujo just to get people to talk or do their jobs in the medical profession. I'm hoping things have sorted out by now, if not, I propose we organize a chant "What do we want?!" "Scans read!" "When do we want it?!" "Now!!" around each building. Or hire a window washer to hold up a sign on the radiology floor window. "Crazy women with Stage IV demand scans be read for their comrade RK...We have no estrogen and we're cranky be forewarned!".
Candy- I'm so sorry to hear your still in limbo for awhile longer and also to hear the news of your sister. Please take care of you too. This must be unbelievably hard on many many fronts and i'm thinking of you as you deal with these things. Your missed around here but we understand, We're here waiting and ready to help or comfort in a moments notice
Sugarbaker- I've taken it at different times during the day to see how it effects me. I can't say honestly sometimes I take it consistently at the same time. Just remembering to get the pill in my mouth once a day is an accomplishment. The one thing that I think does help is taking it with food, if not dinner a substantial snack, otherwise tummy isn't happy. Try to pick a time of day you'll most easy remember and go from there.
RosieRed- I have off and on dealt with nausea on Ibrance but not really consistently. I do keep ginger ale in the fridge to help if queasiness becomes a problem. Sometimes just eating light on those days helps too. I guess its all part of " the dance".
Aprilgirl - hoping you get some rain headed your way to help with everyone's mood around you. I think its so funny. In the winter people say "Its so cold, omg! I can't wait until it's warmer!" and then in the summer people say "It's so hot, omg! I can't wait until it's colder!". Hoping this year is your best year sales wise! Go Girl!
Have not heard from Jackie, haven't reached out lately either, just giving space. WBR is rough. SE afterwards can linger for awhile. Thinking of her and miss her around these parts.
So...MO appt on the 12th. Just a vampire blood draw, hi how are you, see you next month kinda thing. Its been a william shakespeare week for me this week. Have watched about 3 different film versions of Romeo and Juliet (One with Olivia hussey and the new one with diCaprio etc). I was goofing with my Beloved while driving around doing errands yesterday and said, hey, what if i went on all shakespearan in describing my Ibrance gas woes this week to my cancer sisters. "Hark! What harsh wind from yonder buttocks breaks!" "It's the aroma from Verona"
Hope you all have a good week!
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Oh Rabbit that’s too funny 🤣🤣🤣🤣
Saw MO last week, got the ok to start back ibrance. Thought I was supposed to pick it up at his office today, long story, wasn’t there. Problem solved, Phizer will overnight it. But got a little teary when I left. Was weird, don’t know why.
He did say he doesn’t see a lot of nausea in his ibrance patand agrees it was probably stress with DH.
He had a resident dr with him. I managed to crack them up. Said I’d gotten a letter from PAN Foundation, they were going to cancel DH $$. Said he was non compliant. I wrote on the letter Ya think? He died March 29, so I guess he is non compliant. And sent it back to them.
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Had my monthly dr appointment today. Platelet count dipped to 33 when last month it was at 76. They told me to not take Ibrance this week and get another CBC done next Monday.
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Rabbit, I laughed so hard at the Shakespearean version of the Ibrance toots! I am stealing your line, "Hark! What harsh wind from yonder buttocks breaks!" and plan to say this regularly. I've always liked hark, and "methinks", and shall reintroduce them into my vocabulary, forthwith.
RosieRed, my platelets dropped that low on 125mg, so that in combination with febrile neutropenia was why my MO dropped my dose to 75mg. They did recover quickly and now are in normal range again every month. I hope yours recover, too.
Aprilgirl, I feel like I've forgotten what rain is, nearly...it would be so nice to have some! I grew up in the Pacific NW, I miss the sound of rain and the freshness it brings. Standing in the shower is just not the same.
I'm also happy to march around with signs demanding that RK gets her scans read. That is a protest I feel passionate about!
Latest blood work shows my thyroid levels are off, which is totally my fault as I kept forgetting that I can't take the calcium supplement too close to my thyroid med. Whoopsie. At least that's an easy fix. My nextdoor neighbors are painting their house black, which is a bold choice - it won't show any dirt though!
Thinking of everyone here, thank you for sharing your thoughts/fears/suggestions/hilarity, they really help me feel part of a community and not so alone.
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Fas shots Wed, but no monthly MO visit cuz no available appts- when I asked they said she is on leave of absence and they would let me know if she decides not to come back....
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Cure-ious, would you mind looking at these and seeing if one falls in with other trials you've researched? They're being offered at a cancer center in Memphis where my oncologist mentioned researching what's available. They sound familiar and I thought perhaps you had written about them here.
https://www.clinicaltrials.gov/ct2/show/NCT0454600...
https://www.onclive.com/view/fda-grants-lasofoxifene-fast-track-designation-for-eresr1mutant-metastatic-breast-cancer
Love from PatGMc
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Hi Pat, Are you considering trials to switch to next?
Lasofoxifene is a tamoxifen-like drug (SERM), so fewer side effects of menopause or bone problems than AIs or SERDs. It inhibits ESR1 mutations which often pop up after Faslodex or AI therapy, and can cause endocrine resistance. In principle, it would be even better to get Lasofoxifene in combination with a CDK4,6 inhibitor, and there is a trial that includes Verzenio but it took only 29 patients and is already full.
ESR1 mutations can also be inhibited by SERDs (which are oral faslodex-type drugs), including giredestrant. The trial you link to has Ibrance included, but is phase 3 so one may not end up on the trial drug, and the control group is Ibrance-Femara?
Dee has the ESR1 mutation and is in the ARV-471 trial at Sarah Cannon in Nashville. ARV-471 is an ER-degrader appearing to possibly be best-in-class for these drugs, and certainly she has had a terrific response. They say they have also had success in patients who already progressed on SERD trials, so it might be possible to go onto either the Lasofoxifene or the Giredestrant trials and still plan to take ARV-471 beyond that?
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Oh Rabbit, you never fail to crack me up. I do believe we need to rally outside the cancer center. I was a cheerleader many, many moons ago so I could probably do a good job leading the protest!
I never did get a comparison read (with some detail please) from my Wisconsin facility. I called them last Thursday and told them that I’ve moved. I’m washing my hands of them.
I did, however, get a new report in my Florida portal. Did my MO call to discuss? No. Apparently only Dr. RK2020 cares about the findings. It’s a good thing that I got my degree at breast cancer.org. Lol. Im glad I stayed on Ibrance because the progression seems to be minor. This is probably the beginning of the end but I’d like to wring out as many cycles on Ibrance as I can. The only part of the report that I’d like to hear my MOs take is related to my lymph nodes. I’ll post the exert below. I know the SUV numbers are low, but I’m still curious why they are lighting up. I had my covid vaccine in Jan and Feb. My PETs were in April and June. I’m wondering if a biopsy is in order. Does anyone have an opinion? Dr RK needs a second opinion. Lol
“Overall similar size and metabolic activity left axillary level 1 and 2 nodes measuring up to SUV max 2.3 left axilla level 1/2 (CT 65), prior SUV max 1.8. The appearance is nonspecific and could represent ongoing evolution of post immunization changes although early metastasis cannot be completely excluded. Clinical correlation is recommended. Lymph node identified on most recent exam of the upper hilum measures SUV max 2.5 (CT 72) and 8 mm in diameter, present on most recent prior PET/CT dated April 8, 2021 with SUV max 1.7, grossly unchanged.”
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Dr.RK (I like that) I have similar concerns, tumors in my vertebrae that radiated still lighting up in pet and bone scans! my axillary lymph suv is pretty high, and not shrinking, stupid stubborn. In fact non of tumors have shrunk, my MO said because “those tumors are solid so less likely to expect them shrinking” actually it is THE most informative answers I got! So maybe it is a reason those stubborn lighting up in scans, I guess. Recent bone scans showed new lucent lesion, MO called it lytic type lesions, and started convincing me for change in treatment. She ordered F1, anxiety is high... I hate this disease
I don’t understand why my onc team don’t want to remove tumors from my body, including original tumor in my breast. I know some of us, mostly de novo s, have same experience.
My MO, out of the blue measured level of my Vitamin D, and it is in borderline, 30, despite I take 2000 iu vitamin D3 daily. So I added 1000 more to daily prescription! I don’t know if it is ok??
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I take 5000 D3 daily.
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Thank you, Cure-ious, I'm just thinking ahead in case the September scans demand a change. I mentioned to my oncologist that I might be ready for a trial so she's looking.
I very much want a trial that lets me continue with Ibrance if possible. The Giredestrant control group with Ibrance/Femara would be a deal breaker for me as my quality of life stunk on Femara alone. I can't imagine it on top of these Ibrance side effects.
Would the ESR1 mutations have shown up on my Guardant360 test?
If I do have the mutation doesn't it make sense that my onc could prescribe Lasofoxifene with Ibrance for me since it's fast tracked or am I showing my ignorance?
The prospect of Verzenio side effects doesn't thrill me as I have hemmorhoids (WTMI?!).
Perhaps I should just make some art and stop fretting about this, huh?! I hope you're doing well. We could all use some pictures of your garden!
Love and thanks again from PatGMc
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snow-drop - My vertebrae that was radiated in February still lights up but my MO said the “light” is coming from a spot on the other side of my vertebrae. What the heck. They just radiated that area and I have a new spot so soon? Ugh.
I’m curious if my lymph nodes are cancer or not. Could it really be some delayed vaccine reaction like my report eluded to? But it’s getting slightly brighter, so I have my doubts. It looks like I’m going to have to send my MO another note to get her to read my new radiologist report. Sigh
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Cure-ious, your MO is on a leave and might not come back? Holy shite. That's not super reassuring! This is a ridiculous question I realize, but do you have a back up MO? Also, I think I need to get me one of those, just in case (a back-up).
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Sf-Cakes, I know, right?! The guy on the phone dropped that nugget in there about "If she decides to come back", like everybody knows what's going on with her, and I'm clue-less. Still wondering if somehow he just worded that really badly, or meant it literally... I have not had the best of luck with MOs- the first guy died of pancreatic cancer- we got a letter in August that his practice was closing immediately, no explanation, and then his nurse told me his diagnosis. When I googled him to get an email so I could thank him for treating me, I came across several news articles from the previous year where he had been in court, being sued for giving patients chemo drugs that were not FDA-grade. He was not a breast specialist, and had his own operation (ie, not a group practice) and was always griping about how tough it was in cancer med, tough to get reimbursements on time and in the full amount, how Medicare was cheap, his payroll was high, etc, etc. So apparently he was buying and using some non-FDA-approved chemo drugs from Turkey- they were made by the same manufacturer in Canada as the FDA-approved batches, but the Turkey drugs were obviously cheaper.
He maintained the stuff was fine but had already received warning letters but continued on doing it and so eventually got busted by whoever over-sees this kind of thing. I asked my primary doc about him, and he said what is amazing is that while they have clear and strict laws for minor infractions, there are no precedents for stuff like this that is so far over the line. He was on the panel that decided what they should do, he said he disagreed with the decision, but the group decided to let him continue practicing because that was the only way he could afford to pay the fines involved. And then he got cancer and died a few months later.
Well, after the MBC diagnosis I got a referral to the "best breast specialist" in our large metropolitan area, but then she abruptly decided to retire early, and then I inherited my current MO, who I hope is recovering swiftly from whatever it is she is going through. I did notice at the time that she looked stressed at our last meeting. In the meantime, I have had no scans since March when I changed treatments, not that I am complaining, keeping my head down and hope its all OK...
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So, Pat, what we all need is to see some more of your ARTWORK!!! I so hope you have been busy and making fabulous art during the lockdown?!!!
Yes, its good to have some trial in your pocket, it makes the scans so much less stressful. The ESR1 mutation is something that might come up when the cancer becomes endocrine resistant, and it would be detected at the time of progression (will not be there before) by a Foundation One blood liquid biopsy. However, if you do not have the mutation, lasofoxifene might still work, tho its asking a lot to work as a monotherapy. I will go look for some trials and come back- is Nashville too far?
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Oh, Cure-ious, if you've gotta' have a cancer story it might as well be over-the-top interesting! At least the Turkey-treatment guy wasn't doing what that Kansas oncologist did years ago - just giving half doses to save money! Yikes! (I need to research him and see if he went to jail for insurance fraud.)
I guess you and I are Zsa-Zsa Gabors in the oncology world. I'm on my fourth doctor! I thought Number three would be my last but I got too old to die young and he's now past eighty. He decided to shrink his practice and drive to a small town where the people are poor and have no one else. Just a lovely man and I miss him. The one I chose to follow him is quite delightful and I see her every other month. I imagine I could request more visits but I'm good with this plan for now. I do hope you find a keeper if the current one moves on.
I'm practicing avoidance on an art commission right now. Waiting for the muse to show up! I'll post one from some years ago that's autobiographical:
"You Can't Have a Bright Happy Life Stuck in Sensible Shoes"
Love from PatGMc
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