Misleading information: Ibrance is a... - SHARE Metastatic ...

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Misleading information

Ibrance is a very recent cancer medication. Has not been around for 6 years. Do not mistake cycles or round per years. In UK was approved in 2017 and US if I'm not mistaken 2015,but never six years ago. All the best. I would like to know if 75mg work as good but I guess that at the moment, being early years of palbociclib (Ibrance) there's not enough data to be 100% sure.

All the best

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What I’ve noticed is that hospitals do not understand the medicines that interacts with Palbociclib. Last week, I was in the hospital. I had hives all over my body and seizures when I was sleeping. The various medical websites do no show all the interactions.

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I do agree, but am not sure what this is in response to. If it is data, remember that it was in clinical trials prior to those dates, so there could be articles relating to that. Also, if a person participated in the clinical trials, they could have experience with the drug prior to the FDA approval date.

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Including trials the drug has only been used for 7 years.. Pfzier only ran trials on 125mgs not 100 and 75!! BUT all dosages seem to have the same effect , with some variations according to individual tolerances. All dosages knock the heck out of bone marrow whichbus our biggest concern. If we keep neutrophil levels extremely low leukemia becomes the big concern resulting after about 7 years. There are patients on Ibrance that long and still fine but we are just entering past that time frame

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All dosages seem to work

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Do you mean that there are patients on Ibrance for 7 years and it's still working for them?

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My onco at Georgetown as a patient that was in beginning trials and still on Ibrance at 75 mgs and doing well. Now with that considered, apparently she had taxol and other IV chemo right before Ibrance. So I’m not sure for me that counts!

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I’ll ask him at next visit in two weeks about others in two weeks

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Thank you, that would be great! I've been a little anxious because I'm hearing Ibrance stops working after about 2 years. I have been taking it for 18 months. I have heard of it working longer, and I know of a woman who is taking it 5 years now, but I don't know if that's a rare exception. I'm very curious to know more about the patient you mentioned.

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I’ll ask more questions next visit

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I know someone who has had zero progression on Ibrance for three years. She's had mets for 12 years!

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That’s great did her nets diminish?

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Yes, but her side effects are really bad, so she might ask to be switched to something else.

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Have you had mri of your brain?

Also, Ibrance is lowering your immune system substantially and therefore many other things you eat or do that would not have bothered you, may now.

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Hi All...I see some questions here re: duration of efficacy of Ibrance, so i'll add something here...

You can find a graph that shows duration from a study of Ibrance, i.e. the Kaplan Meier curve on progression-free survival (PFS) from for women taking Ibrance + Letrezole vs. just Letrezole. **If someone can tell me how to include an image here, I will. **Here's a link, I hope it works: accessdata.fda.gov/drugsatf...

If you google kaplan meier Progression free Survival palbociclib (or similar) you can find your way there. I think I once found it on Pfizer's website too.

I actually keep a copy of this graph and then track my duration to look at the odds of progression over the next month, year, whatever. Yes, I know it varies, but i feel like that's a bit of a cop out that docs say that whenever we ask for data...Data like this for our cohort/folks like us are the best available data and we make decisions all the time that, either explicitly or implicitly, are based on assumptions re: our medical future...

Some highlights from this curve are:

- Just under 50% of women made it 12 months without progression on just letrezole...about 75% of women on Ibrance + Letrezole made it 12 months before progression.

- Looking at the 50% (like an average...) rate another way; again, 50% of women on just letrezole experienced progression after about 11 months; women on Ibrance + Let made it almost 24 months, on average (50%) before progression.

- The curve has a steep slope early on and then flattens out, which I find interesting. According to the published curve from the study, for a theoretical 100 women starting Ibrance + Letrezole, 25 experience progression in the first year; another 25 in the second year, another 20 in the third year (so it drops more slowly) and then the numbers end at 40 months, where the curve is even flatter, i.e. women getting progression at a slower rate.

- 40 months in, 30 of the (theoretical) 100 women still have no progression, which I find remarkable. Compare that to the line for just letrezole, where 0-5% of women are still progression free at 40 months.

***CAVEAT***

This curve is based on a cohort of fewer than 90 women. But, it has a high degree of statistical validity because of the large difference we see between the with and without Ibrance groups. But that validity decreases as the duration gets longer because there are fewer and fewer women remaining in the study (ie. after progression they presumably move on to another treatment...). So that flattening that we see in the later months could just be random because so few women are in that group.

**Some notes from my discussion w my docs about this data.

- Data has been added and analyzed to break this curve down further based on factors like: de novo vs. recurrence; if recurrence, length of time since original dx; bone vs. viscera mets; age at dx; etc, etc. I do not believe this is yet published - and i don't want to share what might be my faulty memories - but my doc showed me because she had just come back from a conference where it was presented. Your doc could very well have this detail, too, since it's been shared within the Onc community.

I hope that helps...

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Thank you for this, it is very informative and interesting. I will ask my oncologist about this.

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Good info. And basically every oncologist in the country, at least from a cancer center, went to San Antonio conference and do every year. Thank God for that!!

But keep in mind they only studied 125 mgs. That I find a bit disconcerting

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...one more note: i'll echo/add to someone below who noted that there are women who have been on Ibrance for 6 (or more) years, i.e. participants in the original study. An onc at Duke told me more than two years ago that he had someone who had been on for four years...

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Yep! Stats of leukemia will be coming out in next two to three years. I hope that this is not significant and that our bodies just get used to low bone marrow counts. I do think it’s interesting and encouraging that several women say that those counts get a little stronger after being in Ibrance for several months. So hopefully our bodies adjust and don’t damage that much!!!

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Please give me more information, I am really worried know because have never read that Ibrance causes leukaemia. My cycles have to be stopped a few times because Ibrance gives me neutropinia and my hemoglobin is always low as well. Thank you,

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No Ibrance itself does not cause leukemia but if we suppress our production of bone marrow too long then we are in jeopardy of no longer being able toniridice white cells etc. nothing we can really do about this as we want to stay alive in the next 7 years! It tsj s about that long to damage your bone Martha permanently and Ibrance has not been around long enough to see if that will happen!! So sorry to scare you! Think positively, keep calm as much as possible and we are here to support one another!!

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I have also questioned the "22 months" I keep reading about. My onc says- remember that number is the average. Many are higher and many lower. Also, when it stops working, they look for a new drug. Keep thinking we are the ones WAY above the average :)

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Sounds like your oncologist is hedging his bets!! Keep knowing that EVERY day women with MBC go into remission and why not YOU!!

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