does anyone know the difference in treatment between Ibrance 125, 100, and 75? My dr changed me from 125 to 100 and I didn’t know til I got my order this month? I don’t go back til the 13th and am just wondering. Thanks and hugs and prayers to you all.
Sharon
Hi Sharon,
My understanding is that everyone is started on the highest dose and then depending on how you respond the dose may be lowered. For example, many people struggle to keep neutrophil levels up, or experience liver toxicity at higher doses.
Don’t be alarmed that the dose is being reduced - it’s tempting to fear that it’ll be less effective. In fact, it seems that the most effective dose is the highest one that your body tolerates well. My mum had to have her dose reduced to a schedule of 75mg every other day for 3 weeks, 1 week off- it was still very effective!
One doctor told us to think of it in terms of sensitivity- if you need to reduce the dose because of bad side effects, it shows you’re sensitive to the drug so need less of it for it to do its job. Conversely, if you make yourself unwell on a dose that’s too high for you, your body will be less able to mount the desired response to the cancer. So it’s about getting the right dose for you individually, and they’ll be guided by your blood tests.
Hopefully they’ll explain the precise reason for the reduction on your next visit. My bet would be that your last blood test showed low neutrophils as this is v v common!
Wishing you well 😊
Thank you so much, so I think it had to do with my blood count levels? Hugs
hi Sharon , Petal pigtails has explained the dosage reasons so well, I was on 125mg , my neutrophils were low , I was changed to 100mg , I tolerate it a lot better , my neutrophils are ok , just low enough so I can have Ibrance
Wonderful explanation - thank you! 🙏🏻
Great explanation
I am facing a reduction to 100mg, and this is an excellent explanation.
Thanks! Hugs!
I was started on 100 and have stayed there.
Hi there,
I’ve been on Ibrance for almost 5 ½ yrs. I started out on 125 and at about 3 yrs, when my blood counts didn’t recover on the week off, my dr . Lowered the dose to 100 and I’ve been there ever since. So the dosage is based on what your body can tolerate.
They may have reduced you due to low neutrophil numbers. I was reduced from 125 to 100 for that reason. They say each dosage is equally effective.
hi, I was also started at 125mg but needed many breaks in treatment due to lo neutrophils. I have been on 100mg for over 18 months and all well. Having PET scan next week.
I have been on all the doses, kept lowering because of neutropenia. The drug companies always research with highest doses thinking the drug will be most effective for the most people. Not always true. In the case of lbrance for me and for anyone l have known on it - if lbrance works it will work on the lowest dose until it meets resistance. I had 5 progression free years on the med - was on 75 mg formula of that time. Wish you the best.❤
Did you have any fatigue, hair thinning, or other side effects during those 5 years? Or did they subside after a while? Also, what treatment were you changed to? --Trish
Trish, l just read you Bio, oh my goodness you have been thru so much. My condolences for your losses. ❤️
I use to have very thick hair, now it is very thin and course and turned wavy and have two cowlicks on both sides of my crown. I’m about ready to shave it all and get a wig.
Real hair of any kind is better than wearing a wig--trust me, I know!
but it looks so terrible! 😊
See notes from NPmary. Keep asking everyone for good hairdresser.
I had fatigue but it wasnt really debilitating. I am on faslodex only now and the fatigue for me is much worse. My hair became coarse, curly, very thin, very dry, very visible scalp right in front I try to comb over. Moisturize your hair alot, use wide combs. If your younger and still working find a hairdresser who will work with you well, and look into hair weaves and such if you need them. I had some GI problems but l they were complicated by radiation side effects so not just from lbrance. Lots of people have trouble sleeping l sure did l always blamed it on cancer anxiety but it is listed as a side effect. I wish l had asked for ambien sooner to help me sleep. All in all side effects from lbrance were not so bad. Side effects kind of had an ebb and flo to them cannot say they subsided. Are you on letrozole as well? That caused aches and joint stiffness. Exercise and sleep do help everything.Wish you the very best of outcomes, many birthdays. 🎂🌺🎂
I have the same problem with my hair! Ugh
Another suggestion is to try wearing a zimasilk silk cap at nite (only one l have experience with admittedly not that much) I have the mulberry silk one it's soft and comfortable looks like a granny cap, sort of prorects your hair at nite, if you scratch your head like me it can remind you not to and it's supposed to leave your hair feeling good. I am trying it again tonite. You can Google zimasilk or find it on Amazon.
Good luck!
I was on 125 til I got Mouth sores towards the end of the cycle and requested to go to 100. Been on Ibrance almost 4 years.
hi ,Avid Booklover, I too had mouth sores when I was on 125 mg , It was awful , I took strong painkillers to help with the pain , I also used a straw to drink my fluids so I could keep the sores dry , I seem ok on 100mg , Touchwood no mouth sores up to now
My doctor gave me a mouthwash that worked...and something else to swish around. Occasionally when on 100 mg I get some at the end of the cycle...very occasionally....but nothing like on 125...and they go away fast even taking nothing.
thanks , I didn’t know about a mouthwash , that’s good to know as I sometimes get small mouth ulcers on my tongue and gums , they are nothing like the cold sores I was getting when I was in 125 mg Ibrance
Ask your doctor. I am treated at MSK in NJ and they gave me two prescriptions as soon as I developed a sore.
I am in the UK north east of England , I will definitely ask the doctor about it , cheers
I lived i. London for 6.5 years in the 90s, it was wonderful. Hopefully I get to go to a wedding in May of the little boy who lived next door. He was two and we were very close and still today we still chat on the phone through Facebook, it’s free!
aww that’s so lovely , how nice to keep in touch , I do hope you get to go to the wedding, I absolutely loved London
it’s not the London I knew anymore! Instagram has gotten me updated about how updated London is now. The sweets do look wonderful!
you will have a great time ,
Started on 125 mg in January 2018 and was moved to 100 mg in June of that year. I've had really good results while on Ibrance.
Great positive news , thanks that is really good to hear,
Hi Sharon
I started on ibrance 125 and after about 6 months I dropped to 75. I have been on that foe 31/2 years and everything is stable. I think it is whatever your body can tolerate. I absolutely could not tolerate 125. Theresa
What were your issues with the 125? My mother is experiencing extreme fatigue.
it had domestic do with my blood count.
Extremely fatigued, nauseated and all my blood levels low. Could never get my neutrophils up in time to start my next cycle. After about 6 months I dropped to 75mg. I do two weeks on and two weeks off. Tried many combinations but I see to tolerate this one not too bad. Hope this helps for your Mom and that she will be ok.
Hi.
I started at 125 (Ibrance) and after a month, the Dr dropped me to 100, then after another month or so, dropped me to 75, and now I am on 75 for 3 weeks, then two weeks off, and that seems to have been the right place for me. Neutrophils were just too low, and then the low platelet count and low white blood cell count. Now that I have been on the 75 for 3 weeks, off for 2, everything has settled down. While neutrophils are still low, they are not horribly low like they were.
The lower blood test results are the only side effect I have experienced with Ibrance. No side effects from the Faslodex shots either.
Past two scans have all been good. But I have to say the first scan after about 10 weeks on Ibrance showed the best result (tumor size reduced almost 50%), and since then, everything has stayed the same... not growing, but not shrinking either.
The oncologist was never worried about the effectiveness with lower doses... she just said the important thing was finding the dosage level your body worked best with. That was comforting to me...
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