Ibrance (Palbociclib)
Comments
-
Hi everyone,
I'm just going to pipe in on the low ANC conversation. I have been on Ibrance at 125 for 61 cycles. I was very sick when I began Ibrance with extensive bones mets and pleural effusion. After about 6 months on Ibrance, my bone mets healed and the pleural effusion dried up. My ANC generally hovers between .7 and 1.2. After the first few months, we stopped testing it midcycle. Now it is tested every three months when I have my Xgeva shot-it is not timed with the end of my off week.
Working closely with my MO, we have never held my Ibrance due to low ANC because I have almost never been sick or had an infection while under Ibrance. Seeing numerous patients, my MO is under the thinking that low ANC under Ibrance is much different that low ANC under IV chemo. The only time I was sick under Ibrance is when I experimented with the 5/2 dosing. At that time I was swimming in a public pool with lots of babies and think I contracted something viral from that pool. I had a low grade fever for about 3 weeks and then it went away. So now I stick with the 21 days on/7 days off. If I ever have a fever or am sick, I am to contact the MO's office immediately. During the pandemic, I continued to go to stores and did a lot of socializing outdoors without any ill effects.
I write this so that others do not leave Ibrance prematurely. My cancer was and is much more serious to me than potential problems from low ANC that have not manifested. Unlike others report, I find Ibrance easier to tolerate the longer I am on it. I just completed a vigorous vacation with lots of hiking, climbing stairs with luggage, etc and to my relief, I was totally able to handle it. Diet, yoga and outdoor exercise have been key to my thriving under Ibrance. Eating lots of vegetables and protein helps me. Drinking lots of water also helps with the side effects. I also cut out alcohol and caffeine so that I get high quality sleep. My first 3 months on Ibrance were rough with fatigue and side effects but they were also rough on the cancer! I just want to offer another point of view so that people do not leave Ibrance before they need to for another treatment that may be even more difficult.
0 -
Chicagoan - thank you for telling us about your experience. I am a newbie compared to you (on cycle 5 now @ 125mg) and it’s good to know that you are still going strong. I was on letrozole when diagnosed with MBC to the bones only. MO decided to put me on Faslodex and Zometa as well as Ibrance. My biggest complaint is stomach upset. Some days are better than others, but I hate feeling sick like that. I work part-time and there are times when I’m sitting in my cubicle turning all shades of green while trying to get my work done. My second complaint is hair thinning, but I think that has to do with fresh memories of losing all my hair during my first round with cancer in 2018.
I’m trying to eat healthy and I exercise on the elliptical every other day for a 1/2 hour with an app that teaches interval training, so I walk some and run some and I change directions from forwards to backwards. I just want to stay strong through it all.
0 -
Chicagoan- thank you for posting this valuable information! I wish my MO didn't freak out about my ANC so much. This gives me something else to discuss with him. I'm also glad to know that good diet, exercise and proper sleep have helped you tolerate the Ibrance better. Thank you for sharing these tips! I love that you enjoyed an active vacation.
0 -
Thanks Chicagoan....and KBL and others responding--for these helpful experiences. I do hope to stay on Ibrance, as generally I find it tolerable. If my ANC levels had not dropped so much, I'd also argue for not having a lower doses, but unfortunately they feel into the .40s both times. I agree that the fact that still I did not get sick (even with having attended a couple of social events while they were low) suggests that this isn't necessarily super dangerous. However, below .50 isn't usually considered tolerable, I think. Your stoiry about the 5 days/2 days episode is very helpful.... I was going to suggest this but maybe I won't. What I'm hoping is that the levels won't drop so much at 75 and I can persuade the MO to keep to this if it looks like it's working. I do understand his concern though.....he was very anxious to get me on something strong because my diagnosis took so long and the mets seemed so extensive. It might help to suggest that even if I do decline the first time we give it one more go when I get back, though. It's helpful to know that people have thrived for years while using Ibrance at a number of different doses, I'm hoping I can settle into that, and you all are great models!
0 -
Scan #1 done. Barely kept that second bottle of barium down, ugh nasty nasty nasty stuff. CT Tech about wrapped my arm to the point of losing circulation after scan. Had to race back and say "Uh, excuse me, arm's about to fall off here". Another tech helped me to get it off and went "Holy hell" as he carefully cut it off, couldn't get a thumb under it or anything so had to cut carefully so as to not cut me. Then my IV nurse gently rewrapped me to which I replied "Much better, thank you". Beloved treated me to an Italian sub and a loaded chocolate chip cookie and I spent a good long nap in a quiet cool room snuggled in bed with one of my cats. One more scan to go. Was out of sorts so didn't go directly to medical records to sign release to get it emailed to me. But will get printed copy of report after bone scan is done...will remember to go to medical records to sign that release afterwards for the bone scan. Sometimes trying to keep everything sorted out of all the things i gotta do and keep track of when it comes to this disease is overwhelming and i hate feeling overwhelmed...As far as the scan itself was the easiest i've done, had to be because i knew candy and aprilgirl were with me in the machine along with all of you. *bursts out into rendition "We are family, I got all my sistas with me!"
I got an update from Jackie so I wanted to pass along.
Jackie first wanted to thank all of you who have been asking about her and wishing her well, it really means alot to her. Jackie also wanted me to relay the long lapse in her meds was due to 2 inconclusive tissue biopsies, blood biopsy and then the piqray approval. (Sounds like a perfect storm of medical and insurance incompetence to me!). Jackie reports treatment has been tough. She is doing rads and is on Piqray right now with 8 more rads to go. Hoping rads improves her double vision otherwise a neurologist ophthalmologist may be brought in. Piqray has been tough on her too with some nasty SE. Jackie misses being around here and talking but its very hard for her to do right. Praying ladies, lets keep her in prayer as she endures all this. There are some absolutely amazing women who share themselves on these threads and Jackie is one of them. Its gotta be surreal to read updates of yourself relayed by other people. We love and miss you Jackie and I know I can't wait to see you pop up again in these threads
Off to snooze some more. Appts and scans are energy zappers, i find i need to just totally veg after them. Check in again after scan #2. Will report how scan #1 results go soon. Fingers crossed for me, candy and aprilgirl!.
0 -
Rabbit - I look forward to hearing positive news from all 3 of you soon. Now get some rest. It will do you good.Jackie - we are all rooting for you! Hang in there! And as Rabbit says…"We are family, I got all my sistas with me!"
0 -
Home from my scans. Long day with the drive and the tests. Now for the wait--- over the weekend. MO appointment Monday. Thanks for the pocket duty. Needed again Monday for what the scans show.
0 -
Thanks Rabbit. Now that’s gonna be stuck in my head. 🤣🤣yay scans over! Have a good nap.
0 -
Hi Chicagoan, I'm glad you're doing good on the Ibrance. Your post helped me get my chin up a little. I'm hoping to get back to hiking too.
0 -
I’m in the middle of a tug of war. My insurance company sent me a letter last month saying Accredo is the only approved pharmacy to dispense Ibrance to me. I originally got my Ibrance from my oncology clinic’s specialty pharmacy. Now both pharmacies are calling me repeatedly wanting to know if they can fill my Ibrance. I am afraid to go against what my insurance company says, because I don’t want to be stuck with a $16,000 bill for going against their letter. Yet the oncology clinic special pharmacy called and cancelled my order with Accredo. I’m fortunate that I am on day 13 of my 21 day cycle, so there is time to sort this out. Has anyone else on this thread had a similar experience with two pharmacies fighting to be the one to fill the Ibrance
0 -
Aprilgirl- Got thru those scans ok? Rabbit and I checked in. How about you?
0 -
FGodmother - Ugh. I’ve never had your issue. My BCBS policy requires me to fill my long term prescriptions with ExpressScripts so when I switched from tamoxifen to Ibrance, my script was automatically transferred to Accredo. I used to pay a co-pay of $20 per cycle but a couple of months ago, Accredo required me to sign up with a service (I can’t remember the name right now). Accredo still fills my prescription but who pays for the script has changed. The end result to me being I now pay $0. I’d be very hesitant to get a script filled at a location not sanctioned by my insurance. Good luck sorting through this bologna.
0 -
Candy, Rabbit and all - thank you so much for the pocket duty! I arrived at my cancer center at 10am (as scheduled) for my pet appt which was scheduled at 12:15pm. The nice gal at the front desk said "you are here for 2 scans" .... I said - I only have on MyChart one scan? She said "they do them at the same time". While waiting for the scan tech to come get me I check the MyChart app and notes from my oncologist's last appt and it only mentions quarterly petscan to be scheduled end of June/early July. So - I had both a CT with contrast (neck to pelvis) and a PET CT mid body. It kind of threw me off but really, I welcome all scans and any info to make sure tx is working.
I do have quarterly pet scans but apparently haven't had a CT with contrast/neck to pelvis since 11/08/2019 when I was first getting the stage IV dx. Happy to tell you that there was no evidence of disease anywhere and there is a lengthy report of "unremarkable" in all areas. WOOHOO! The other nice thing about the PET and CT at the same time is the CT contract was injected vs me having to drink it as drinking it would have messed up the PET scan (I dislike drinking that stuff). Had a nice long music session with the Foo Fighters, although as y'all know - the recorded voice "breathe" and Hold your breathe" kind of interrupt the vibe?
PetScan results are not in, yet. I am hoping they will be the same, unremarkable. If they are NED then I will have Ibrance danced my way to NED for 12-14 months.
FGodmother - I also use Accredo, as required through our insurance (also use ExpressScripts) and would be hesitant to use a different pharmacy due to the cost. My insurance covers it with a $2,000 co pay and the insurance company (Anthem?) had a specialist call me and enrolled me in a Pfizer program that covers the copay so my out of pocket is $0.
Candy, scan days are long days - we have unusual hot weather for Seattle, plus Fridays in the summer create a backlog on the ferries. I ferry commute to appts - it's only a 30 minute ferry but I had to wait 2 hours to get home (overloaded and I forgot my medical boarding pass). Long time to wait in a hot car and I didn't feel like walking on the waterfront....I am in your pocket for your onc. meeting and results on Monday. I also meet with my onc. on Monday!
RRabbit - sounds like your scan day was overall pretty good but tiring. One scan down, one to go! It is exhausting to have to keep up on all of this, plus the scheduling, plus the "going to the records dept to get a copy". Thank you for updating us on Jackie - she is on my mind and I am sure all of our minds, as "WE ARE FAMILY". Praying that the piqray and radiation do there job and annihilate the cancer cells.
Chicagoan - love your post and success on Ibrance. This info keeps me going!
Hope all of you have a nice weekend and our dx can be out of our thoughts for 1/2 day or so!
0 -
Candy I wanted to check on you earlier, good luck with the results and MO visit on Monday (((hugs)))
April and rabbit good vibes for good results 🤗 🤗
I had a bit of event... I rescheduled to see my MO 1/5 months sooner because I thought she forgot to order scans and it is already 5 months from last one, her nurse was ok with no scans until seeing MO! I was right she had forgotten so she placed the order as stat. she’d like scans with both injection and oral contrast. Long story short when I showed up full- contrast-drunk (!) they put me in a long line, about 1h 45m wait, then they got me another bottle of contrast before scans which wasn’t fun at all, that made me so sick staying in bed for few days, I felt heavy on my chest, like couldn’t breathe... injection alone burnt me from top to down...
anyway, I’ll have chest results by Monday, hopefully, abdomen results say heterogeneous perfusion of r kidney and decreased liver parenchyma attenuation.I don’t know what are these not successful googling, any thoughts? Thanks 🙏
0 -
Aprilgirl - how awesome it must be to be “unremarkable”. ❤️ I hope everyone on this site gets to be unremarkable.
Chicagoan - loved your story…there is hope…❤️
0 -
@RK2020, thank you! I will take stable or shrinkage but have never been so thrilled to be "unremarkable".
@Snow-drop - wow, I am so sorry! Your situation is what is exhausting - we HAVE to keep track of all of this stuff, so often I catch little slip ups in the "scheduling" of tests, follow up appts etc. I am relieved you were scheduled for scans but then to have that long of a wait and have to drink MORE contrast. SIGH....I would have felt sick as well. In your pocket for the monday appt. I don't know what those terms mean but keep us posted.
0 -
So, was everyone MBC when started on Ibrance? I was not metastatic, but it was my 3rd incidence of BC, 2 left (2009, 2016) , one right (2019). My oncologist feels strongly that each was a new cancer, but admits that there is no way of really knowing, and that maybe I have a mutation that is not documented yet. I took Ibrance for 11 months before the cancer blew up and became metastatic, at which point she took me off Ibrance, saying to was not working. Exemestane/Everolimus seems to be the last tool, except maybe chemo. I just finished 18 rounds of radiation. The chemo in 2016 did not seem to do much for the cancer, I do not know if she is proposing the same chemo. Many of you seem to be MBC but stable. Should I ask about resuming Ibrance?
0 -
Aprilgirl- I agree that 2 scans are better than 1--- especially since different scans see different views. The more information the better, I think. Woohoo for "unremarkable" on the CT !!!! I do not have to drink the stuff anymore--- my CT is of the chest, to look at lungs. IV contrast but not the drink. My MRI is of the abdomen and pelvis. So MRI IV contrast, but not the drink kind. Haha-- I wanted to listen to Contemporary Christian music, but it drowned out the "take a deep breathe and hold" voice. I think I missed a couple of commands before I realized it. Then I told the tech and she stopped the music. First time that has happened. Must have been something with their microphone.
Snow-drop--- You need to tell them about the reaction with the drink. I never had an issue with the drink. Heavy chest does not sound right. Sorry I do not understand "heterogeneous perfusion of kidney" or "decreased liver parenchyma attenuation".
Pocket duty Monday for Aprilgirl, Rabbit, and Snow-drop.
0 -
bluegirl - What about trying verzenio after an Ibrance holiday? My Wisconsin onc said that once Ibrance fails me, his 'go to' is everolimus (Afinitor) plus exemestane but I could stay on fulvestrant instead of exemestane. My choice. Then he is open to trying Verzenio as my third line. Of course, if I was to have a crisis type progression, things could change but this is a general roadmap. I have not had this same conversation with my Moffitt MO.
You might find this article helpful or maybe just confusing. Lol. https://www.medpagetoday.com/meetingcoverage/mbcc/85370
You haven't updated your profile. What chemo did you take in 2016? After my AC+T chemo in 2016, I was put on tamoxifen until I was dx MBC in 2020. I/f was my first line for MBC.
0 -
BlueGirl - Istarted Ibrance/fulvestrant when I became stage IV. I had stage 1 cancer in 2008. Completed 6.5 years on femara after surgery/cmf chemo and radiation.
Re: Ibrance reboot: What kind of estrogen blocking med were you on with Ibrance? A/I or Fulvestrant?
It's not clear to me if we progress on hormone blocking meds and a cdk 4/6 is it the hormone blocker to blame, did our cancer morph and drop ER status or ? If you haven't been on Fulvestrant and your cancer is ER + would it be an option with Ibrance or perhaps one of the other cdk 4-6 meds (Verzenio or Kisqali? I am not clear on if we have progression on one CDK 4/6 inhibitor does that rule all of them out for us?
Pat McG came back to Ibrance and is doing well. Maybe Cure-ious knows what the options might be in this situation?
0 -
BlueGirl, First, get a Foundation One test if you haven't already, to make sure you do not have the ESR1 mutation- if you have that, the cancer will not respond to an AI and probably won't do great with Faslodex either. If there is no ESR1 or PI3KCA mutation (which would indicate you should try Piqray), then agree with RK2020, ask for Verzenio as the CDK4,6 inhibitor, its stronger than Ibrance and hits other targets also. Following progression after that, or if you have the ESR1 mutation, pick out a clinical trial with a SERD, or ARV-471 (Dee's trial, which also has an arm that includes Ibrance) -people are able to go on a lot longer on endocrine therapy by tacking on a SERD or PROTAC. If you have ESR1 mutation then you probably are still sensitive to a CDK4,6 inhibitor, so you can stay on Ibrance and save the Verzenio for later, which maybe useful because V works well on its own, even in later stages when the cancer is endocrine resistant. And there are other drugs to try before chemo (PARP inhibitor, CDK7 or CDK12 inhibitors, etc), plus when you do get to chemo the targeted ADCs, like Trodelvy and Enhertu, are a lot stronger than traditional chemo with fewer side effects. There are many options but you have to be willing to get some guidance from an MO at a large cancer center that does clinical trials. And don't do much chemo before moving in that direction, many trials exclude more than one or two chemos in the metastatic setting...
0 -
After reading the scan stories, I am starting to wonder how my CT scan will go tomorrow. I'm scheduled for early morning with drinking the contrast as well as IV contrast. After that, I have my oncologist visit and somewhere in there I bet I will have blood drawn for lab work to see if I can start another round of Ibrance. So I was planning to go to work after all this. Should I feel well enough to go to the office, do you think? I can't remember if I was told I could refrigerate the bottle of contrast to make it more tolerable. Is that right?
AprilGirl - wow! So happy to hear your good news!
Snow-drop - so sorry you had to drink 2 bottles of contrast. I hope that never happens again.
FGodmother - I hope you can get the insurance stuff worked out quickly. I have been getting my prescription filled at the cancer center pharmacy, and normally ExpressScripts does the long-term prescriptions. The cancer center files all the insurance and gets the pre-approvals. But I am relatively new to this so I could get a letter from the insurance company, too. The cancer center wants to fill the Ibrance prescription so that I only get one month at a time (versus a 90 day supply that EXpress Scripts suggested) in case I have to lower the dose.
Candy - good luck with the report.
0 -
GoKale, my scan days are like this: I check in to clinic for my nuclear med injection. I ask them to leave the IV in so that the CT techs don't have to stick me again. Once I have the injection I walk over to the hospital and check in for the CT scan. I am supposed to be there an hour early so that I can drink the bottle of contrast. It's room temp, but it looks like clear water and it doesn't have a noticeable taste. I do usually empty my bladder before the scan.
During the scan, they use the IV line to inject the other contrast (which makes me feel like I've wet myself!) and then they continue the scan. When they are finished, they remove the IV line and after emptying my bladder again, I trot back over to the clinic to get the bone scan. I try to make sure that at least 2 hours have passed between the NM injection and the bone scan - just so that the stuff has a chance to work its way through my system.
It's sort of a long-ish morning, but I basically feel fine afterwards. My husband drops me off and then picks me back up, so that I don't have to drive myself (just in case I don't feel well).
Good luck with your scans and your appointments!
Carol
0 -
Happy to hear about AprilGirl's good scan report and hoping for similar good news for Rabbit and Candy as well as SnowDrop. Hoping current treatments lead to improvements for Jack5ie.
A little bummed I cannot start on Ibrance 75 today.....had blood work and ANC is only up to 910. Onc definitely wants me over 1000 before I can get going. So he's going to test again Friday. That's a drag as I leave two weeks after that....he said we would test the day before I leave to see where they are then. So hoping that 75 is the magic dose that does not send my numbers plummeting....otherwise its some other dance for me, I think.
0 -
GoKale - I don't have to do the drinking contest, or a nuclear bone scan, so instead its rock up, get encannulated, wait to be called into CT scanner room, they hook me up and I am in and then back out and about in maybe 15 minutes, with 2 hours planned for the whole manoeuver. Ive got a no underwire bra for scan days to keep it easy. Mostly I block off the morning as out of office and then I am back at my desk for the afternoon,though I usually block that off as well (sometimes it can take a few hours to mentally return from Cancerland) for no meetings.
0 -
Sondra, your "no underwire bra" comment is funny but true. I have my "scan outfit" that consists of yoga like pants (no snaps or zippers) and a loose tee shirt with no bra. I'm small busted, well, actually half-busted, so I just wear a light vest over my tee shirt. I like the yoga pants, because then I don't have to change or try to pull my pants down to my knees while I'm on the CT scan bed. The tee shirt has 3/4 length sleeves, so they can get the IV line in, but it doesn't show when I'm walking from scan to scan.
0 -
Cross posting with a couple of my go-to Threads----
Ok I am home from my MO appt and want to post while it is fresh in my mind. Though I am very tired from the long day--- travel to the center, lab work, MO appointment, and Xgeva injection.
So the conversation took a turn I was not expecting. 3 months ago, my MO presented my case to the liver tumor board and came back to me that they did not have any recommendations but "watch and wait" for now. So, this time I was thinking systemic treatment change options. I was ready to discuss PARP's or Xeloda due to my biopsy results (biopsy done in April). I had my scans on Friday and had not seen the results before today's appointment. Scans this time show I had 1-3mm changes in all 4 liver mets again this time. So, since last September, there have been small increases of 1-6mm in each tumor each scan. Slow, steady growth. So today my MO starts discussing liver resection or ablation. I said "I thought the liver board did not advise on that". She said she will ask them again. She said that she hates to change me to a PARP yet. That they are hard on the blood counts and that prolonged use of PARP's can cause leukemia. ??!! That she wants to zap these tumors and keep me on Ibrance/Letrozole. That we can use I/L for a long time with minimal side effects, I guess minimal compared to other meds.
So now I am at a loss as to what I should do.
Edited--- The whole ER-/PR+ now on my biopsy---- that is evidently rare. And with the PR still + my MO thinks that the hormone pathway is still a problem and that hormonal therapy may still be working. At least some with the small growth I am having. She said she would be more concerned about moving from hormonals if I develop NEW tumors.
0 -
Candy, your MO has a good strategy, her plan to keep you in ibrance sounds logical. So now you wait to hear from tumor board?
0 -
Snow-drop-- I messaged the nurse after I got home. I use the portal messaging system way too much I am afraid. Anywho, I messaged her and asked what the next step is. Will I hear from them after MO talks with the tumor board? So I should hear back.
0 -
Candy, I love your MO's proposed plan! I'm all for any kind of direct attack on one or more MBC tumors. We had a woman in support group who was four years out from a liver resection with no signs of the MBC on her scans. That's what I'll pray for as you move forward!
Love from PatGMc
0
