Hello gorgeous ladies. After how long on Ibrance 125mg did your oncologist reduce the dose and why? I’m on 125mg with Letrozole for 8 months now. I’m feeling more nausea, dizziness, headaches and zero appetite. He’s sending me for a brain scan this Friday along with regular CT scan. He said that we may have to adjust my meds but I’m scared to lower the dose. My Mets now are to the chest cavity nodes and liver. I pray it hasn’t spread to the brain because honestly I dint know what I’ll do 😢.
Thank you and God bless you all 🙏💞
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Annadm
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Hi! I was on Ibrance for a year and then because of neutrophils being very low reduced to 100. I was on 100mg for another year and now my count was again severely low for over 3 months. I am now being put on 75 mg. I’m hoping to be on this for at least another year.
I’m on Letrozole, Ibrance and Zometa after being diagnosed de novo in November 2018. I was unable to stay on the higher doses of 125 and 100 as my neutrophils were too low even after two weeks off. I suffered badly from fatigue as well and some of the symptoms you mentioned. After about 8 months I dropped down to 100 then in February I was dropped down to the 75 dose. I have felt much better since then and my neutrophils are just good enough for me to continue on Ibrance. My energy levels are better and I don’t need to nap in the afternoons to get through the day. It has worked so far for me and other women here so you shouldn’t worry if you need to drop down to a lower dose. We are all different and some women do well on the lower dose with much less side effects.
I am sorry you are feeling unwell and its normal to feel anxious with every new ache and pain but it isn’t necessarily due to the cancer and can be side effects from the meds. You will have the results of your scan soon to put you mind at rest. Dropping to the lower dose may make you feel much better as it did for me. Take care.
I started at 125mg of ibrance and also letrozole and zometa May, 2019. I struggled all summer and dropped to 75 in Nov. feeling better and just managing to keep my neutrophils high enough to keep going.
I was on Ibrance 125 mg for just one month then on 100 mg for over a year then it failed...dose reduction was due to low neutrophils
I think most ladies can’t cope with the high dose...majority are on lower doses which are just as effective...don’t worry if you have to reduce the dose
I am definitely with you, hoping your brain scan is clear! I'm sure it's very stressful to ponder that...I've not had mine scanned since the initial dx and of course any little head ache, etc., has me thinking...but your symptoms sound like they could easily be from the meds or numerous other non-scary things...I'll be thinking of you on Friday..
Re: the Ibrance, I've been on 125 for over five years, no issues except for low blood counts, especially ANC's but to some degree RBC's, other WBC's, and - more recently - platelets....
...BUT, I read a study posted here on this site a few years ago which indicated that reducing dosage does not reduce effectiveness of the Ibrance. So that's good news and I imagine it's why the docs do so frequently to keep side-effects in check...
I'm wishing you the best with it, hoping for good news and relief from your side-effect...
I was lowered to 100mg after being on 125mg a month because my neutrophils never came back up high enough even after being off the week. I’ve been on 100mg over a year and all my scans have been stable so far. So 100mg is working just fine.
I am really not too sure as the neutrophil count seems to be measured differently in the USA. Here in the UK the count should be 1 to resume treatment but my onc would let me go back on if I reached 0.9. Looking back over the past few months it has been between 0.8 - 1.1 on the lowest Ibrance dose. The normal range for a healthy individual is between 1.9 to 7.5. Ho hum.
I've been on Ibrance/letrozole for about 28 months. I started on 125 Ibrance, but due to side effects went down to 100, and I've been at 75 for well over a year. At my last PET in March, there was no sign of hypermetobolic activity anywhere. Spinal mets (I take Xgeva every 4 months) are gone and the one lymph node that was active is completely clear. Side effects are also reduced. I've read in several places that if you respond to Ibrance, dosage makes no difference. If it works, it works, and the lower dose has worked wonderfully for me. I wouldn't give one negative thought to reducing the Ibrance dosage.
Here are 2 Ibrance-related studies that should put your mind at ease!
A Phase II study that randomized 72 HR+ HER2- MBC patients to receive Ibrance in either a 125 mg or 100 mg dose in combination with physician’s choice of fulvestrant or tamoxifen concluded that the 100 mg dose was associated with a lower rate of grade 3 or 4 neutropenia. Furthermore, both Progression Free Survival and clinical benefit were the same in both groups. Dr Hope Rugo was the lead investigator. targetedonc.com/news/reduce...
In a slide entitled, “PALOMA-3: Effect on PFS of Dose Reductions due to Neutropenia” presented by Dr. Sara Hurvitz at Clinical Care Options Oncology on June 18, 2020, it was reported that the PFS observed between patients who had ≥ 1 Ibrance dose reduction vs. no dose reduction due to neutropenia was identical at 9.5 months
I've been stable on 125 mg. Ibrance + 2.5 mg. Letrozole for over four years. So far, so good with lung mets only. I have VERY thin hair now and thin brittle nails. My joints are sore. I am very, very overweight at 300 pounds and I have wondered if that is why I've been able to tolerate 125 mg. Anyway, it's still working
I’m glad it’s working for you but I just can’t bear the side effects anymore.
My wife is on 75mg Ibrance (she is currently on cycle 6) because she had a bad reaction previously to high dosage Verzenios (300mg) and her oncologist didn't want a repeat of the severe nausea and fatigue she suffered then. So far, so good; her blood tests are fine and her energy levels are reasonable given her circumstances (she had a stroke at the beginning of the year). I cannot understand why the standard protocol is to push high dosages first when, as others have said, lower dosages seem to be just as effective but with far fewer side effects.
Please be strong. I was started out on 100 mg of Ibrance. I have yet to finish a complete cycle so they are trying now 2 weeks on and one week off. I understand your feeling, we are helpless in many ways to have the right decisions made. Be strong
Hi there, I have not been lowered so not sure I can offer anything but I wanted to mention. I am on Ibrance 125, letrozole and zolodex 3 mos injections. Have been on Ibrance 125 a year.
I don’t like the new pills of ibrance. It has a horrendous pungent “taste” If I don’t get it down quick I will get nauseous and dizzy. Also if I don’t drink a lot of water I will get the symptoms you described. My doc sent me for a brain mri (was due for one coincidentally) and all was ok.
Don't worry! There's several studies out there (including a new one my oncologist told me about last week) indicating there's no difference between Ibrance 125 and 100mg as far as efficacy goes. I was only on 125mg for a few months and have been on 100mg for over 3 years. I've been NED since August 2017 and tolerating the lower dose so much better. Go ahead and switch to the 100mg if that's what your doc says - you'll feel better and still be on the right track. Hope you get a long, long ride with it.
I have been taking Ibrance since November 2017. I believe I was on the 125mg dosage for just a matter of months (maybe six) before it was reduced to 100mg. Like nearly everyone who has had a dose reduction, mine was based on declining white cell counts and/or neutrophils that were negatively impacting my immune system as a result.
I don't think that lowering your Ibrance dosage will introduce a risk. Many patients are on 75mg with satisfactory results. Has your oncologist discussed the impact to your white cell count and neutrophils? Your diminished immune system might be causing some of these side effects you describe?
God bless you, Anna! You are in my collective prayer for all of the precious MBC sisters who share the same fears and anxieties. We are with you!! XXOO
Good morning. My dose of 125 Ibrance was reduced to 100 after 11 months as my blood counts dropped too low. I do feel less tired with a reduced dosage. Time will tell I guess if it still works as well. I am very grateful for all the information I receive on this site as I do not do my own research except to google symptoms and read commentary from Mayo Clinic. Thank you to all the wonderful people here who share. It is very helpful. Madlyn
I was on 125 mg dose for 7 months. Changed to 100mg & had less side effects (fatique, neuropathy, dry skin & nails, etc) & bone met is gone. Feel better on 100mg and my last scan came back NED. Been on 100mg for 8 months. Doing much better. ❤️🙏❤️
started on 125mg with the onset of treatment in 2015. commented on the fatigue and other challenges this body was experiencing. within a few months the dosage was lowered to 100mg. not long thereafter, requested to the dosage be lowered to 75mg. scans have been stable, NEAD. headaches are part of this life, and they're increased on Ibrance; migraines have returned recently, also. had a baseline brain scan with the mets dx and have one yearly. a cyst was identified in the brain. the neuro onc stated, "it is not cancer, he's not sure what it is, and it could have been there prior to the dx." i chose not to do anything more; the cyst has not changed or grown. i see another neuro onc for the headaches and migraines, b/c each nuero onc has their specialty. keeping you in thoughts.
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Changes
Verzenio dose reduction?
MRI Scans - changes in Mets
Changing times.
