Hi, I saw my oncologist yesterday and she reduced my ibrance from 125 to 100 mg. This makes me very nervous, though she says there should be no reduction in effectiveness . Has anybody had this happen and what were the results? Did the smaller dose still work for you? I have been on ibrance and letrozole for 3 1/2 years and my white blood cell counts are lower than they should be. thanks
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reduced doseage of ibrance
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Dragonfighter
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Hi Dragonfighter, 3.5 years on Ibrance and letrozole is great ! I've been on Ibrance and faslodex for a little over 4 years. I also had low white blood cell counts from Ibrance . I've been on 75 mg ibrance for almost 3 years . I've had clear scans (no evidence of active disease ) for over 3 years (nead scans since 9 months on treatment ). My oncologist has told me that a reduced dose of 100 or 75mg Ibrance is just as effective and it's better than having to take addl weeks off due to low white blood cell counts .
I have noticed that my wbc count is slightly higher if I have my blood work in the afternoon . It's a slight difference but a count of 1.1 vs .80 is a big difference for those of us on these medications. I'm going to try to have my blood tests in the early afternoon going forward .
I hope this helps.
It does really help, Thank-you! Helps me keep the panic at bay!
Good 
next time go in the afternoon for bloodwork if you've been going in the am . I'm going to do this and see if my wbc is consistently higher in the afternoon .
I will, thanks.
I have my bloods done early afternoon and it does make a difference. Last cycle had blood done one day in the morning neuts were 0.89. Had them repeated the next after 1.2. So afternoon works best for me.
That's interesting. I have to have mine done early morning as I have my hospital call the following day and they have to have results through. X
That is so awesome that you have done well on the lowest dose of Ibrance for a long time. If the lowest dose is still as effective, I wonder why our doctors don't just put us on that. I'm sure the toxicity level is lower than the highest dose. Also, I never understood how they could give the 125mg dose to every patient no matter what their weight is. I would think it would make a difference. I have been on the highest dose for over three years. My WBC is usually in the 3 range and my ANC is close to normal or slightly above. I have been NEAD for awhile now but would love to go on a lower dose if it would lessen the long-term effects. Thanks for sharing.
So right! I always ask my oncologist about both the questions you raise. I am small, I have less blood, fewer cells than a regular size person. Shouldn't dose depend on that? Won't I be more saturated than someone who weighs double? No, they say, but no explanation.
Also, why do they start at the highest and work their way down if we don't tolerate it? Why not start at the lowest effective dose? I think the evidence is in for Ibrance that there is no difference by dose. I tolerated the full dose, but when I went on Verzenio, not so much. My oncologist reduced it twice, to the lowest dose. She said something like "it works or it doesn't. If it is working for you, you can go on the lower dose."
Now I am starting Kisqali. From what I have read, Kisqali is less effective at lower doses, yet she is starting me at a lower dose because of the risk of prolonged QT and mine is borderline. Go figure. (I figure it doesn't matter because of my size, even if they deny it.)
Been on that dosage for 3.5 years and no issues.
Good to know. Are you on the 21 day cycle? Have you ever stopped taking it during the last 3.5 years for any reason?
Stopped when I had thyroid surgery. Other than that...no pauses!
Hi Dragonfighter,
I have been on Ibrance/Anastrozole since 2019...first at 150 mg., then 100 mg. and finally at 75 mg. with no loss of efficacy. I am in remisssion per my oncologist and I feel truly blessed. I was so tired by my 3rd week and felt that 2 weeks out of a month was not good enough for me. My quality of life is vastly improved. I also take Ibrance non-traditionally. I take it 5 days a week and 2 days off with no breaks in a month. I have had no issues with my WBC or my tumor markers elevating. I wish you the best with the lower dose. If it's something your doctor is suggesting, that's great. I suggested it to my oncologist base on no active disease and we are both thrilled with the results.
Good luck, Patti
Hi Patti,
Have you ever stopped taking Ibrance (for couple weeks or months), since 2019?
Hi Greatday2,
Yes, about 2 years ago, I stopped for about 3 months and we saw some progression in my lungs. I told my oncologist I wanted to go back on, and he was going to change up my meds. I insisted it didn't stop working....I stopped taking it. He agreed to put me back on Ibrance. I have had zero progression in 2 years at 75 mg.
Happy Holidays, Patti
Thanks for your reply, Patti!
Can I ask why you stopped taking it for 3 months? Was your doctor still prescribing it but you just didn’t take it? Or did he know?
I was sooooo fatigued by week 2, I just felt my quality of life wasn't what I wanted it to be. Oh, my oncologist knew my decision and was not supportive....I was still taking anastrozole which is a whole other story. He still saw me and did blood work and ordered CATs. I could feel I needed to go back on.....I started coughing again and was short of breath. I needed to confirm to myself that I wasn't ready to throw in the towel.....I am glad I didn't.
I started with 125 and then reduced to 100. No difference, although I only got 2 1/2 years on it. Don’t worry.
Dear Dragonfighter,
Congratulations on doing so well for 3+ years.
No fear. I was on Ibrance 125 mg when wbc’s too low to continue at that dose. Lowered to 100mg in 2020 and I have continued to be stable with no metastasis. It’s fairly common I believe to change dose and, while I don’t completely understand it, I’m told whatever the dose it will work. Or not.
Happy holidays to you. Kathleen
Wow 3.5 yrs on 125mg is amazing. I managed 19 cycles. In Feb this year my dose was reduced, I can honestly say its been the best decision. I have more energy feel fine and more importantly am stable. So much so that My oncologist has moved me to 6 monthly scans as I am doing so well. Good luck 🍀
Hi. I just collected my first reduced dose Ibrance yesterday from 125 down to 100 after 21/2 years because of side effects. Very stiff and also painful joints and extreme tiredness. They thought maybe it’s too toxic for me. If it makes no difference then it will be due to the Letrazole and if so they will put the Ibrance back to 125. Review in 1 month. Sue
I’m there too. Reduced dosage to 100 due to fatigue. There was a study recently posted that dosage does not equal effectiveness. And I’ve also read that dosage is created based on what’s tolerable and not on what works best. I was very anxious to go down to 100. Since I have I feel so much better (less fatigue) and have so far remained stable. Prayers same for you! Love dragonfighter btw!!
I started on 125 mg but due to low white count I was reduced to 100. My oncologist said it’s just as effective though she did want to reduce to 75 mg. My BC is metastatic. I’ve been on it since 2020
I've been on Ibrance for 5 years, 4 of those years on 100. I'm doing great! No fear.
Hello!
Have you ever taken a break from ibrance since you’ve been on it?
Yes, a few breaks. I may stop for a month or two here and there. It's really the Letrozol that's the culprit for the bad side effects though.
Thanks for replying! Does your doctor suggest the breaks? If not, does he/she know you stop taking it sometimes?
I started on Ibrance 100 mg and letrozole in 2016. My Ibrance dosage was reduced to 75 mg by 2017 due to slow recovery from low white blood counts. I have been on that dosage ever since with no evidence of active disease. Hope this is reassuring to you.
After reading comments re: timing of blood draw, am going to try afternoon next time. I always learn something on this website. Thank you all.
That is great to hear! Have you ever stopped ibrance for short periods of time since 2016?
In August of 2017, April of 2018 and August of 2018 I had two week delays each time. Since then, I have been on a regular schedule.
I was on 125 ibrance and letrozole. Only lasted a few months because I was not well in and out of hospital because my blood counts were so low. My oncologist dropped me to 75 and it has worked for 4 years. I am sure the lower dose will work for you too.
Hi. I got dose reduced from 125 to 100 after just two monthly cycles of Ibrance due to very low blood counts. My husband read that studies show that 100 mg is just as effective as the 125. Hope this helps. Merry Christmas!
I had to have my dose reduced to 75. I take 3 days and then skip a day until I complete the 21 days on—16 tablets total. After a week off, if my neutrophils and platelets are high enough, I begin the cycle again. This has worked for me for over 7 years. I’m still on letrozole and Ibrance with scans showing NED. I think there should be trials on a lower dose. The way I take Ibrance, it is equivalent to about 57–I think 55mg would be a good dose for me
Hi! I am curious if your doctor suggested this schedule or did you just figure out that it worked for you? Also, have you ever taken a break from ibrance since you have been on it?
My oncologist suggested this schedule. Initially, I was doing 4 days on and 1 off—17 tablets in 21 days—but my neutrophils were still low. Occasionally, I have to stay off Ibrance for 2 weeks instead of one week. It really does a number on my platelets and neutrophils! When I saw a different oncologist, he thought it was a ridiculous schedule. I never saw him again!
The only break I have had from Ibrance was 4 years ago when I had a hip replacement. I had to stay off Ibrance for about 3-4 weeks so that my neutrophils and platelets were high enough.
I have been on Ibrance and letrozole for 7 years. Four years ago my oncologist reduced my dosage to 100 from 125, and I did fine until this year, I am still mestatic free in my body but the breast tumor grew and went into a lymph node. I am having a double mastectomy on January 5, I just finished my Ibrance cycle and will not go back on until 14 day’s after my surgery. I also know a lady in my support group that is on 75 of Ibrance and is doing great.
thank-you, good luck with your surgery, I had a mastectomy too., it went ok.
It does help, merry christmas to you too!
I think this is more common than the norm. From my understanding dosages are always prescribed at the highest possible to see how one's body metabolizes the medication. The same thing happened to me when taking Ibrance due to low WBC. Everything read and heard from my ONC (old Onc and current Onc) the efficacy would not be affected.
I was on 125mg for about 6 months until they had to lower dosage because my body couldn’t recover fast enough. I was on 100mg for about 6 more years… then because I complained of chronic lethargy, (and I’d been NED for 3+ years, the doc reduced me to 75 mg for 3 months. Still not much energy. He’s reduced it now to 75mg… 2 weeks on/2 weeks off… for 6 months. Will discover the effects of that decrease next week after Scan.
Will make a post! Praying lower dosage is still effective.
Happy Holidays to one and all!
Thanks for posting this question. I'm on Ibrance and Faslodex and while my blood counts are OK, the fatigue is difficult and gradually increasing. It's good to hear that, if needed, a lower dose may be an alternative in the future.
Hi Dragonfighter! I was on 100mg of Ibrance for over five years then dropped down to 75mg for these last two years and I'm doing great - no progression. It's getting harder on me (muscle pain) but I believe it's the buildup of toxicity from the chemicals in Ibrance and letrozole. Just a theory but I believe it's true.
It's interesting to read posts from others about blood counts being higher in the afternoon. I haven't noticed that, but I will watch my tests going forward!
Being at 75mg has made a big difference in my fatigue and my neutrophils are consistently over 1.0 - they were 1.6 last month which I haven't seen in years!
Don't fear the lower dose. Wishing you all the best in your journey.
Big hugs
Susan
The smaller dose has worked for me! Don't worry it's just as effective.
I was lowered to 100mg after 2 months on 125 mg because my neutrophils didn’t go above the 1 even after the week off. I worried about it because I was just getting started and was afraid to not be as aggressive as I could be with treatment. I have been on 100 mg only for4 months but I do feel better. Not tired and my numbers are now consistently above 1 I can’t comment on long term effectiveness because I am fairly new to the whole metastatic disease and its treatment. I had a lot of chemo 22 years ago and thus far this seems pretty easy in comparison to everything I did in the past. Best wishes!
I had my ibrance lowered from 150 to 100 6 months ago. I was getting a horrible rash on my hands.Its way better now. Been on ibrance for 10 years. All we can do is cross our fingers.
Hello,
That is great to hear! Have you ever taken a break from ibrance since you started 10 years ago?
I had my ibrance lowered from 150 to 100 6 months ago. I was getting a horrible rash on my hands.Its way better now. Been on ibrance for 10 years. All we can do is cross our fingers.
I had two dose reductions in quick succession when my neutrophils just could not handle the higher doses of Ibrance. I have been on 75mg for about 18 months and have been stable the whole time. I had the same worry but time has proven it is ok to do the reduction. Best wishes ❤️
I have been on Ibrance and Letrozole since June 2021. I can't remember when my onc. reduced my dose from 125 to 100, probably around the 4th or 5th cycle. Neutrophils couldn't keep up. I have less fatigue and side effects on the 100mg. I have taken breaks from the Ibrance several times over the years. Sometimes just an extra week off due to low neutrophils and sometimes for up to 4 weeks when we have a trip planned. Scans remain stable and the breaks are nice to get your energy and tastebuds back. Wishing you well on this crazy journey!!
Hello! I had my dosage reduced from 125 to 100 after being on Ibrance for a few years. I am now at 5 1/2 years, and have had no progression. And my neutrophils are within the acceptable range.
So good to hear! Are you on the regular schedule? (21 days on, 7 off)? Also, I was wondering if you ever stopped taking ibrance for any period of time since you’ve been on it?
Yes, I am on the regular schedule. I stopped taking ibrance briefly last year when I had covid, but other than that have been on it continuously.
Three months ago I was reduced to 100 after 5 1/2 years on 125. Feel so much better!
mBC to right pluera and pleural effusion dx July 2015. treatment involving Ibrance began August 2015. on lowest Ibrance dose @ Jan 2016. NEAD @ March 2016. still NEAD and on first line of treatment.
I was moved to 100 shortly after starting and then was on Ibrance for 3.5 years (4.5 years ago). I don’t think there has been a study explicitly comparing 125 and 100, but I was told the same thing about effectiveness of 100. You’ve had a good run at 125. And there will be other drugs if Ibrance 100 allows progression. Best wishes for a happier new year!
Thank-you happy new year to you too!
Hi - my oncologist put me on 75mg to start a year ago and has said that’s where I will remain. I had WBC and absolute neutrophil issues on the 21 day cycle (I was exhausted all the time) and she took me off for a week to stabilize me. That made me uncomfortable so I started researching if there were other dosage protocols that patients responded well to. I read about the 5/2 plan and asked my oncologist if I could move to that and she said absolutely. Since changing to 5/2 I am doing 100% better. I have felt as though my body and my mind have adjusted very well. I have no GI issues, or any other symptoms really. Although the joints in my hands and my shoulders ache, ligaments too. That may be the Letrozole. But it is not so bad that I can’t do what I have done for years. I do get tired but that is well managed by good sleeping practices ( a warm bath every night before bed). Happy New Year and good luck!
Thank-you, all these replies have helped me so much!
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