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Ibrance dosages

hdhonda profile image
12 Replies

Someone posted a link that said there is almost no differences in the Ibrance dosages. Anyone remember? I can't find it. Blessings Hannah

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hdhonda profile image
hdhonda
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12 Replies

I remember reading that as well. I'm on 75mg and I sincerely hope and pray that 75 is just as effective 🙏🙏🙏

Barbteeth profile image
Barbteeth

I can’t remember either but the gist was that all doses work the same and lots of ladies are on 75 mg

I’ve mentioned on here before that my oncologist only had one patient on the high dose...god knows why were started on it at the beginning of treatment...probably for research purposes but I think it’s unkind to do so especially as we’re in a state of shock at that time and probably in the worst frame of mind to deal with such toxicity

Barb XX

hdhonda profile image
hdhonda in reply toBarbteeth

Hi Barb,

My understanding was they start you on the highest dose and go down if blood counts are too big a problem. It seems like starting on the lowest and going up if tolerating well - but what do I know? Blessings, Hannah

Godbeforme profile image
Godbeforme in reply toBarbteeth

off the subject, but I just wanted to mention that my hubby has been taking statins for 21 years and never any muscle or joint aches, for what that's worth! God bless you and heal us all please Father, in Jesus name, amen!

Barbteeth profile image
Barbteeth in reply toGodbeforme

Oh that’s interesting...it’s difficult to know which med is causing what side effects so it’s a guessing game sometimes...easy to blame the wrong one!... when I stopped Ibrance for five weeks my joint pain was the same so I suspect the letrazole is the culprit yet I was adamant it was the Ibrance!!!... just goes to show

Best wishes

Barb xx

Godbeforme profile image
Godbeforme in reply toBarbteeth

same thing happened to me when I tried taking the letrozole every other day, I actually felt WORSE ... so much of it is psychological as well ... hard to know what's true and what's placebo! <3

BangorBelle56 profile image
BangorBelle56

When I took it, I was on 125mg

hdhonda profile image
hdhonda

Sandra,

Thank you so much. Blessings Hannah

Godbeforme profile image
Godbeforme

I've read that too! my onc said he would make a deal with me, that if my neutrophils drop below 1.5 he would put me on the 75 mg. dose because I want to take the least amount possible that is effective. God bless you and heal us all please Father, in Jesus name, amen!

NPmary profile image
NPmary

I've been on 75 mg for at least the past year and doing well - stable no progression since I started. Started 10/17 on 125 mg kept getting lowered because of neutropenic. The research leading to approval uses higher doses hoping to be effective for the largest number of people so that's what the FAD approved the dose at. Many others do well on the 75 mg I don't think the dose matters so much just don't know when it will stop working or if we will be a long time outlier. Good luck to you and everyone on this site. ♥️

Southside25 profile image
Southside25

Hi. That might have been me. Below are a couple of cut-and-pastes I previously posted from a site called "Inspire" or "Team Inspire"; I'm sure you can find it. This pastes kind of weirdly, so I tried to clean it up to make it more readable. I've gone from 125 to 100 to 75. My latest scans, after 4 months at 75, were good. No spreading and everything remains stable.

"Hi, Debbie...I just had an appointment with my oncologist yesterday-- she told me that a Pfizer

representative told her recently that post-marketing analysis of both the earlier clinical trials and actual

patient use (data to be released in the future) is showing that ANY dose is equally effective-- that if it

works, it works, regardless of the dose, and there doesn't seem to be any correlation with degree or

duration of response based on dose.There will be more sub-group analyses reported in the next year or so

trying to determine if a particular sub-group of patients (lobular vs ductal, ER+only vs both ER and PR+,

etc...) responds better than others....

So I wouldn't be concerned about lowering the dose- I am almost at the end of cycle 32--the last 28 of

them at 75 mg. So it hasn't affected the effectiveness for me...and I will continue at this dose at least until

my next scans in January.

One other thing to consider is a recommendation from a research pharmacist I talked with when I was

having difficulty with the higher doses and low WBCs/ANC-- he said, based on his knowledge of cancer

biology and where Ibrance works in the cell reproduction process, it is his recommendation to take a

lower dose for more days in a row and also minimize the amount of time off the medication, than to take

a higher dose for fewer days or having longer days-off intervals.

Hope that you find that you get less side effects from the lower dose. May you dance with NED for years to

come!

"

and

"My onc, who is a researcher and has a wonderful team of scientists-- including pharmacists-- to work

with, typically has a threshold of 2 cycles in a row either needing dose interruption due to a day 14 or day

one WBC less than 2.7 or an ANC less than 0.8-0.9, or "time off drug" prolongation longer than a week

(barring extenuating circumstances like surgery or some such thing).

She and her pharmacist feel that due to the average 29-hour half-life, prolonging the time off beyond 7

days is not as optimal as keeping on a consistent dose, even if it is a lower dose....however, they also

believe that once you have titrated down to 75 mg, if you are still getting a good clinical response but also

still having those low blood counts, then shifting the dosing schedule around is definitely worth trying.

Her pharmacist colleague (Sam, a lovely man!) says "There is no magic in the number 7", so you don't

necessarily have to move to taking an entire second week o􀁷, nor do you need to keep on a 21-day "on"

cycle....he is a strong advocate for being creative, so long as you keep a few principles in mind:

Based on where Ibrance works in the cell reproduction cycle (and likely this holds true for

ribociclib/Kisquli, since it shares very similar CDK4 and CDK6 activity--abemaciclib has a slight different

action profile and we never discussed it since it was long before it came to marker that we had our

discussions)

* the time "on" Ibrance should always be longer than the time "off" the drug, and the longer "on" interval

with the shortest "off" interval is the better choice (so, for example, 14 days on and 4 days off is better

than 17 days on and 7 days off)

* due to the onset, duration of action and half-life of the drug, he suggests at least 10 days "on"is best to

get meaningful benefit

* 2 days on and 1 day off for 21 days (or the 30 days you would have medication for on that regimen, then

take some days off if needed based on your labs) is a very sound approach; he would not suggest ever

going beyond every-other-day dosing; and he would prefer someone try every 36 hour dosing before they

tried every-other-day. Other schedules could include 3 days on and one off or 4 on and 1 off

Also, please also keep in mind that there is NO data that suggests that people on a higher dose get a

better (regression vs stable disease) or longer response than people at a lower dose, so I would not be too

reluctant to lower the dose based on undesirable side effects (low blood counts as well as fatigue,

nausea, GI upset, mouth sores, etc). I know that I was very reluctant and unhappy when I had to go to

lower doses, but I certainly felt better and also was finally able to complete full cycles and start the next

one on time, which ultimately is the best thing for suppressing the cancer cells. And now that I am more

than 30 months (32 cycles) on it, I know that it is true that lower doses can be equally effective. In fact, my

onc believes that the lower doses may be more beneficial in the long run due to the lighter effects on the

bone marrow, liver, kidneys and thus will allow my body to be in the best shape possible to deal with the

cancer and the cancer medications for a long time. She says that it is well known that about 1/3 of cancer related

deaths are due to the ultimate effects of the medications and not to the extent or action of the

cancer at the time of death...so she almost always shifts doses around when possible to find the minimal

effective dose for each patient in order to minimize the collateral damage to the body and it's organs.

Bonus is that many of her patients seem to have fewer or less serious side effects that is seen at the

highest doses.

Whew--didn't meant to get so long-winded on you....and as for the 125mg unopened bottle-- you can ask

your onc if s/he has a patient who is having difficulty meeting the co-pays; or perhaps someone from this

site will message you directly and privately. It is technically illegal to share medications that were

prescribed for you, but typically since both you and the recipient have a prescription for it, and you are

not selling it, in reality there would not be any consequences to you, at least here in the US. I would be

reluctant to mail medications to certain foreign countries...

Be well! May you feel less fatigued and get great results for months to come."

Godbeforme profile image
Godbeforme in reply toSouthside25

Thank you so much for this valuable information, I am saving it in an email to myself; it has helped me very much as I have been in ibrance hell for the last few days, of my own making mind you, but hell nevertheless! It all started when I started reading and searching for people who had experience with the 75 mg. dose and lo and behold, here was your post and had I found it sooner I could have saved myself and others quite a bit of anguish! I thank God for this site, the support, and you marvelous sister warriors! Have a blessed day! <3 xo

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