Ibrance (Palbociclib)
Comments
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Feel similarly kind of discouraged by the latest report from the PALOMA-2 study. My MO is on vacation until the end of the month, but I anticipate a highly spirited discussion between us when she gets back, I'm sure I'm not her only MBC patient that's going to bring this up. Sigh. I of course like the concept of a longer period of time without progression, but am curious if the cancer is just marshaling the troops for a massive attack in the meantime.
Rats, cats, and bats.
In your pocket for scans, Aprilgirl! We shall continue to scan, cancer be dammed! (I'll work on a better rhyme for you before then)
Hello RK! Pool party this summer, yes? What I wouldn't give for us all to hang out poolside with a massive table of taco fixings.
Hello Divine! Good to see you here, I've missed your posts. This new site revamp is poopypants (sort of rhymes).
Waving hello to everyone else, giving hugs and tacos so we can carry on, in this MBC life. ❤️🌮🌮
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anne16,
Regarding treatment for bone pain......After I was diagnosed with MBC with mets to bones and liver, I was started on Zometa, an IV infusion bisphosphonate, for the purpose of reducing or controlling bone pain. That was my MO's explanation for why she ordered it. I've had minimal to no bone pain so far. I've been getting the infusion every 3 months, and will now start to get it every 6 months. The drug does have rare, but serious side effects - jaw bone necrosis and atypical femur fracture.
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Anne16 - I have not had bone mets so don't have the answer to your question...hopefully more with this experience will chime in!
Re the recent Paloma-2 study....yeah...rats, cats and bats...
SF-Cakes, perfect comment! I talked to a former client who is a breast oncologist (sold his home in early 2019 and moved a few states away so has never been my doctor). He said never switch meds or drug therapy if its working. Never. He said stay on it, "you are doing fine". There are many great drugs/treatments in studies and coming up so keep the faith. I am still going to discuss it when I see my new temporary oncologist on 6/27 but if my scans are clear (God willing!) I will most likely stay on Ibrance/fulvestrant.
AnnTop - maybe the "best toxicity profile" of the CDK 4/6's is why they start with Ibrance in certain cases. Good point. Let us know what opinion your new MO has in July.
WendyinWi - I agree that in your case, if you have signs of progression why would you not switch? Unless you switch to faslodex from femara and perhaps that will make a difference?
Divine, great to see your post and opinion. This news is disheartening for sure.
RK2020 - sign me up for the pool party!
Thank you for pocket duty:) 6/21 is the date for my pet/ct scan:)
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sf-cakes, thanks for the laughs:
rats, cats, and bats!
We'll continue to scan, cancer be damned!
Hugs and tacos are welcome any time!
Weninwi, I'm reading the book on IF. Thank you for telling me about it. I think we can mention the name and author, but mods, correct me if I'm wrong. I'm not trying to promote anything or claim a cure. I'm just looking at ways to lose a few (15) pesky pounds.
Carol
(weninwi PM'd me with the info. I can do the same if anyone is interested.)
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Im no longer on Ibrance but I am curious about how all this shakes out and what you ladies find out from your onc chats. Some interesting points in the FiercePharma article, though, and I imagine there are some very interesting statistical tidbits deep in the data someone will eventually tease out (hopefully not from the Pfizer marketing department!). I think of some of our long term ladies on this drug and wonder if perhaps just an AI would be working for them instead of AI + CDK 4/6. But Im not an oncologist.
I hope that for some of us we didn't blow our CDK 4/6 chance on Ibrance and can perhaps, like some, circle back in the future but onto Kisqali or Verzenio. And while the stats on OS and PFS may be handwaved by MOs, the side effects endured are not so easily dismissed - if I would have had a similar run with just an AI, I would have taken that, OR put up with similar/slightly more side effects on one of the others for a much longer run.
All anyone can do in this shitshow is go with the information we have at any given time!
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Aprilgirl, I agree with your onc client. My personal approach has been not to fix what ain’t broken! I stay the course when a treatment works. After being on Arimidex awhile, I complained to my onc about joint pain and she said, “do you want to switch to something else?” and I firmly said no because it was keeping me stable. Currently I take oral chemo, Xeloda, a tolerable drug. I have the common side effect, hand and foot syndrome. My new onc (other one retired) is very focused on the hfs so I don’t complain about it much because 1) it’s working and 2) she’d want switch me to something else if I complained too much.
I have to wonder if Verzenio will be found to have the same issue as Ibrance, that it does not lengthen overall survival. It was hard on me to the point I needed a blood transfusion to raise my red blood cell count which did not recover after I stopped taking it. Plus it did not work. (Between that and Ibrance, I spent thousands of dollars, so I’d like my money back!) I stayed on Verzenio long enough to give it a chance to work, but nah.
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Yes, yes and yes. I agree with you all. We made the best decision we could given the facts at the time. If it ain’t broke, don’t try to fix it. And if longer PFS is all I got from Ibrance, I’ll take it. I’m all about QOL so if I was able to kick the can down the road, I’m good. Sure, longer IS would be nice but it’s spilt milk. Onward and upward. Let the good times roll!
Speaking of good times, it’s perfect pool party weather! And I’ve got a great music play list all ready to go. Jump in. The water is refreshing (and good exercise too!). In your pocket Aprilgirl. ❤️😎👙🩴⛱ 🌮 Oh dear…I better put on my knee brace because I know I’m gonna start dancing on the pool deck. 🎼💃
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anntop- Thanks for your detailed response, I will go through the article for sur
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So interesting. I've been on Ibrance for two years and my scans today showed that I am stable. I will see my MO on the 20th and will ask her about it. But like some of you have said, if it ain't broke, don't fix it.
RK, what can I bring to the pool party? (My fingers kept wanting to type "poop" not "pool!")
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rk2020, I'm packing my bags and moving in with you for the summer!!! The pool and hot tub ♥️♥️ look like a little slice of heaven on earth! I'll bring the salsa, chips and margaritas!
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What I wouldn't give for a pool right now. The one closest has an outdoor and indoor lap pool, but the outdoor one is closed because of lack of staff and the indoor one is closed more often than not because its 60 years old and the physical plant is on its last legs. Other option is unheated and Im waiting for it to warm up to justify the cost of getting there and using it!
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I have been on Ibrance for almost 2.5 years and have been NEAD since July 2020. I am nervous about switching to one of the other drug options because they sound like they have potential for worse side effects and I seem to be doing fine medically on Ibrance. I wonder if Pfizer may have to lower the price on Ibrance. I don't go to see my MO again until August so I am thinking that what to do about Ibrance will be figured out by then. I did find this on the Pfizer site about the recent findings: https://www.pfizer.com/news/press-release/press-re... .
The pool sounds wonderful! I'll bring tacos!
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Sunshine - it would only be a poop party if we were on Verzenio. 😂😂
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rk, that's funny (or not, if you're on Verzenio.) I'm still on Ibrance, so I think I'd be safe.
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I had my oncology appointment today. We discussed the Ibrance study-neither my doctor nor I want to move me from Ibrance since it has worked great for me for almost 6 years. We don't know why but it has. She has other patients who have also had long runs on it.
Even knowing what we know now, I still think I would choose Ibrance over the other CDK 4/6 inhibitors because the side effects have been extremely tolerable for me. She was very optimistic about treatments down the line such as Enhertu. I will finally get my genetics test later this year to see if I have the BRCA 1 gene to know if Lynparza is also a future option.
It's great to have this site b/c the community at BCO helps keep us aware of our options.
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Hi all, I've just now been reading the comments made here since March, as we wait & wait for the mods to do something (anything) to get this site back. But I wanted to comment on the Ibrance discussion. I've just gotten all-clear scans marking seven years on Ibrance, first with Femara, now Faslodex. Ibrance is clearly a huge drug, not saying it because I've been OK, but the trials all showed a more than doubling of PFS with Ibrance, so its definitely contributing!!! And many trials have had a Faslodex alone arm so we know the PFS totally sucks for monotherapy, just a few months.. Why does it not show an OS advantage? 1) The trial composition was skewed in some way to be different from ribocyclib and so doesn't show it, tho it trends in that direction, 2) there is some other (currently unknown) thing ribocyclib does, for example enhance the immune system, in a way that makes subsequent treatments stronger. Most importantly, there is no reason to not circle back to a CDK4,6 inhibitor and try a different one in subsequent lines of treatment. For example, Verzenio works as monotherapy (the others don't) and is particular good on liver mets, and has shown trial efficacy in later lines, so there is no reason to not try that. If one was on I-F and moved to a SERD or ARV-471, it could be tried in combination with ribocyclib rather than Ibrance, etc..
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If anyone is interested, here is a study suggesting that we might be able to squeeze out a few more months PFS by circling back to a CDK4/6 inhibitor. In this case, Kisqali. https://www.practiceupdate.com/content/asco-2022-maintain-demonstrates-role-for-ribociclib-following-progression-of-hr-positiveher2-negative-metastatic-breast-cancer-on-a-cdk46-inhibitor/137526
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Wow, that's a lot of information. I can't process it but thank you for posting it for those who do understand it. I just complete cycle 26 of Ibrance and it appears to be working. I'll see my MO on Monday. I may ask her about it but I'm thinking if it ain't broke, don't fix it.
My apologies if I posted this already.
Carol
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Chicagoan - congrats on 6 years! Good info from your MO.
Cure-ious - 7 years and thank you for the fantastic recap and opinion on the recent Ibrance study . If gives me a lot of hope and definitely helps me feel better about "staying the course ".
I would love to stay on this combo for many years to come .
sunshine99- agreed, "if it ain't broke" ...RK2020 - your pool and Landacaping are gorgeous ! Sign me up ! I'll bring margaritas and salsa/ chips !
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I'm so glad so many have posted about this ibrance-doesn't-equal-longer-overall-survival topic, because I'm about to start my next cycle of it and I was giving the box of Ibrance the old side-eye. 🤨
I agree with the idea that if it's working, stick with it, and thanks for sharing what your oncologist friend said, Aprilgirl. I suspect my MO is going to say the same thing when I talk with her.
It's funny, ha ha, how my mind STILL believes at some point I can stop taking meds because I'll be better! Good grief, I tell myself, get with the program, Cakes! (Cakes is what my husband calls me.)
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I haven't posted here in a while - a combination of hard-hitting losses of people I have known from back in 2018 when I first joined, site glitches and much craziness on the home front.
However, I feel compelled to chime in on the much-discussed results of the Ibrance/letrozole PALOMA-2 trial that did not show an overall survival benefit for Ibrance/letrozole. It is normal to feel disappointed, but I think the headline results paint an unnecessarily discouraging picture.
This will be rather long, but I hope that some will find it helpful.
The "headline numbers" for overall survival in the Ibrance trial were 53.9 months for the combination and 51.2 months for letrozole alone. By comparison, the "similar" MONALEESA 2 trial for Kisqali/letrozole showed a headline-grabbing overall survival of 63.9 months for the combination vs. 51.4 months for letrozole alone.
Based on those numbers, we ought to wonder why are our MO's not switching us immediately to Kisqali? Should we demand that they do? I have a few thoughts below:
1. The Ibrance results were skewed by unexpected differences in the numbers of patients that were lost to follow-up for whatever reason and are required to be presumed "alive" for the purposes of the analysis. If one arm has substantially more of these patients, that can make the survival data appear artificially better. In the Ibrance trial, 13% of the patients in the Ibrance arm and 22% of the patients in the letrozole arm were lost to follow-up. When they took those patients out of the equation, median overall survival was 51.6 months for Ibrance/letrozole and 44.6 months for letrozole alone. That shows a difference, but it still looks worse than the Kisqali results
2. The difference in patient population between the Kisqali and the Ibrance trials. The Kisqali trial did not allow any patients that had developed mets while taking aromatase inhibitors or less than 12 months after stopping. That is, the Kisqali trial EXCLUDED patients that were KNOWN TO BE endocrine-resistant (i.e., resistant to hormonal therapies). In the Ibrance trial, 22% of the patients developed mets less than 12 months after finishing treatment for early stage disease; the vast majority of those patients received some type of hormonal treatment. That means that about 20% of the patients in the Ibrance trial were endocrine resistant.
3. In patients that developed mets more than 12 months after finishing early stage treatment (including anti-hormonals), the combination of Ibrance/letrozole showed an overall survival of 66.3 months; letrozole alone showed an overall survival of 47.4 months. That's a big difference, particularly considering that these are all recurring patients (not de-novo).
4. To put it in even sharper perspective, the Kisqali trial showed only a month difference (52.4 vs 51.2 months) in median overall survival in patients that were not de-novo, despite excluding endocrine resistant patients. Virtually the entire survival benefit in the Kisqali trial comes from de-novo patients. I'm not saying that Kisqali is not worth taking for recurring patients, and there are likely some additional factors at play here; just pointing out that showing a difference in median survival is hard and depends on a lot of factors.
5. Real world studies for Ibrance have shown a survival benefit over letrozole. For example, this study shows that the overall survival was not reached for ibrance/letrozole vs. ~43 months for letrozole alone. The curves in Figure 3c look pretty convincing to me.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC79890...
6. At 7.5 years of follow-up, 10% of the patients in the Ibrance/letrozole arm were still on Ibrance/letrozole. Only 2% of the patients in the letrozole arm were still on letrozole. This suggests that what we are seeing on these boards with people lasting many years on this combination is not a fluke, and it's not just a case of people who would have done just as well on letrozole alone. One in ten of the patients in that combination trial got to see their kindergarteners start high-school or their high-school freshmen graduate college while staying on the same treatment.
Obviously we need better chances than 1 in 10, and we need longer than 7.5 years. But I have confidence that being put on Ibrance was the right decision for the vast majority of us here, and that staying on it for as long as possible is the way to go.
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Piggy99 - where did your post go? I think you brought up some very valid points and I want to thank you for digging into the data and posting your analysis. If I was still taking Ibrance, I wouldn’t jump ship especially in light of some of your points. And as several of us have already said, if it ain’t broke, don’t fix it. To these long term ladies, I say “keep on keepin ‘ on” and I hope one day down the road that you blow your MO’s mind because you are alive and kicking!
That being said, I’m a realist and appreciate good data even if the data isn’t what I had hoped. The stats out of SEER are so old that I’ve been patiently waiting for CDK4/6 OS stats. Now that we’ve got them, I think many are disappointed that OS for any of the CDK4/6 inhibitors isn’t better. At least I know I am. I’m not too surprised, but I am disappointed. To your point, we need more then 10% of us still living at 7.5 years. It’s so frustrating that we can all have the same sub-type of BC and yet only a handful do really well on these drugs. I’m privileged to know several of them that follow this thread but we need MORE. Months are great but I’m looking for years.0 -
Aprilgrl1,
Thank you for the information. I have actually got 6 opinions so far working on my 7th at Mayo. I am switching from Ibrance to Kisquali as well. I’ve seen many data analysis that suggests it’s a better drug. This was one report, but lately I’ve seen many, they seem to do more data testing than Ibrance Or Verzenio. Hoping it will get me to NEAD, then I can see what options there are. Always so much to consider. The information from others really helps. TY
https://www.facebook.com/groups/385737558243843/permalink/2221597207991193/0 -
Ddil, did you bring up switching from Ibrance to Kisquali, or did your MO? I was also diagnosed at the beginning of this year, and have only been on Ibrance for a short time. I have an appointment with my MO on Wednesday, so I guess we’ll have this conversation.
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piggy99- I missed your post ! If your still doing well on Ibrance , send me the info in a pm!
Ddil- I don't have the answer for Ibrance users and when or if we should switch drugs . Another question I have is with our insurance companies, will they allow the switch and will they allow patients to go back to Ibrance.
We all have MBC but each case is different!
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Weninwi
I’m lobular as well and on Ibrance for 5 months. Although I’m responding to the treatment it’s certainly has been a roulette of side effects. In addition, my CA27.29 is stuck at 75. I’m switching next month to Kisquali I figure I’m already getting side effects might as well try a drug that can get me to NEAD. Lobular is also such a different cancer than ductal I’m finding out. I hope you get on a drug that will stop that progression! The reviews from the ASSO (?) conference confirms Ribo.
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In your pocket, Aprilgirl, for your scans. May you get great technicians who are in a good and helpful mood, and may your results be stable!
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I totally forgot to mention the Ibrance study to my MO yesterday when I saw her for my quarterly appointment. Neither she or the Fellow mentioned it and just said I was OK to start my next cycle (#27) on Saturday this week.
I also had my quarterly infusion of Zometa. I had been getting it monthly and was afraid that with the extended time between infusions, that it might make be sick like in the beginning. Nope. Zip. Nada. No SEs (nausea, fever) so I'd call that a win.
Not a bad Monday, all in all.
Pocket duty for Aprilgirl and anyone else who needs it (or just wants someone to come hang out with snacks!)
Carol
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Did someone say snacks? I’ll bring the pizza but I’m warning you. You’ve got to be quick grabbing a slice.
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