Moving dosage on Ibrance from 125mg to 100mg

[Terilyn12]

I have Mets to bones and lungs. Diagnosed in May 2018 and been on letrozole and 125mg of Ibrance. My neutrophil is consistently low (between .3 - .6) but today it hit a really low level at .2. My dr finally agreed to move me from 125 to 100

My question is : anyone who has lowered dosage , did it help with neutrophil count and white blood count. AND... what is difference in the effectiveness in the lower dose

Thank you - I am a little disappointed that, after 7 mos, my WBC just can’t keep up

Teri

[Hidden]

Hi Terilyn -

I understand that studies have shown no decrease in efficacy with a lower dose of Ibrance. And, yes, I understand that your neutrophils should bounce back pretty quickly. Best wishes!

[Terilyn12 in reply to Hidden]

Thank you..

[Barbteeth]

Hi Teri

I only managed 2 weeks on 125 mg and have been on 100mg dose since July

My oncologist has only one patient who has tolerated the higher dose so you’ve actually stuck it out for a long time

Apparently the lower doses are just as effective

I have widespread bone mets

Barb xx

[Terilyn12 in reply to Barbteeth]

Thank you so much ♥️ I needed to hear from someone other than a dr.

[Barbteeth in reply to Terilyn12]

Hi Teri

Sometimes I learn more on this site than I do from doctors..I find it difficult to remember to ask things at my appointments and let’s face it..they’re not experiencing the physical or mental side effects of mbc like us ladies

All the best to you

Barb xx

[Hidden]

I have been on 100 for 3 months and no change in my bloodwork. Mine are still low.

[Terilyn12 in reply to Hidden]

Sarcie, where are your neutrophil #s? Did your dr explain the different in effect on the cancer at the 100mg level? That’s where I get 🤷‍♂️ confused

[Hidden in reply to Terilyn12]

He said studies show it works the same as the 125. My neutrophils were 0.3 after my one week off so it will be 3 weeks off again this month before I can start the Ibrance again. He is torn in whether drop me to 75 and hope I can only have one week off or stay at 100 and be off for 2-3 weeks. He said he honestly doesn’t know which will work best. I’m his “trial” patient.

[Terilyn12 in reply to Hidden]

I hope so too!!! Happy to find someone struggling as low as I am. My dr says that even as low as I am, it is pretty rare for infections when the low neutrophil is caused by Ibrance. Thank you for answering - I am just trying not to freak out

[Hidden in reply to Terilyn12]

Glad I could help. A lot of women on here take 75 and seem to be doing well. I have never caught anything, not even a cold in the past year taking Ibrance.

[Tap321 in reply to Hidden]

I agree.

[Tap321 in reply to Terilyn12]

I tend to agree. I have been living with low wbcs around 1.9 for three years and seem to do fine. My neutrophils are around .9.

[Barbteeth in reply to Terilyn12]

Hi

Me again

My question is this..why on earth are we given the high dose at all if the lower doses work the same?.. maybe because it’s such a relatively new drug?

I was actually scared of going on a flight soon after I started Ibrance in case I caught anything from another passenger as my wbc were low..however I go on flights cinema trips theatre etc etc now and f don’t even think about it..so far (fingers crossed!) not had any infections..not even bothered with a flu jab

Barb xx

[mariootsi in reply to Barbteeth]

That's my question also! Why not start with low dose?

[Terilyn12 in reply to Barbteeth]

That gives me so much more confidence ♥️ .... I haven’t gotten sick once in past 7 months and my counts are always low — now I am looking forward to seeing what the lower dose will do (and pet scan next Wednesday )

[Hidden in reply to Barbteeth]

I think they want the higher dose as it is the optimum dose but for those of us that can’t handle that they have the other doses. Honestly I feel we are guinea pigs as the drug is so new.

[Hidden in reply to Hidden]

Yes we are guinea pigs because so 10 year studies are available. We just learn from each other here.

My onc lowered my dose to 100 and told me to take a two week break. My labs looked great after the two week break and I started the 100mg 2 days ago.

[Terilyn12 in reply to Hidden]

Great news!!!! I am looking forward now, to lowering to 100 ♥️

[Hidden in reply to Barbteeth]

Barb, I asked my very experienced and knowledgeable onc that same question and her answer was "because that's what the manufacturer suggests to start with"

[Tap321 in reply to Hidden]

Why not get a second opinion with a dr. Very experienced with this?

[Barbteeth in reply to Hidden]

Same for me ☹️

Barb xx

[Red71]

I am on 75mg of Ibrance with Letrozole. I started at 125, went to 100 and then down to 75 in my first three courses of taking it. I have bone mets in my back and hip. The ones in my back were bad enough to cause compression fractures and make me loose 3 inches of height. I am now on my 4th round of 75 mg. My wbc has been about 1.1 right before I start, but my doc thinks that’s where it will probably stabilize. The lower dose has not kept the Ibrance from working. I got the results of my last scan last Wednesday. There were no active cancer cells! Merry Christmas to me! I hope it works as well for you.

[mariootsi in reply to Red71]

The Merriest of Christmas to you! Celebrate!

[Terilyn12 in reply to Red71]

That is awesome!!! Thank you for shsring!!!!

[AmosF in reply to Red71]

That is such positive news. Thank you for giving the rest of us just starting this med some hope.

[Red1246 in reply to Red71]

Fabulous! Congratulations.

[Buffwright]

I was on 125 for about 3 months and was getting dizzy. I’ve been on 100 for about 27 months. My counts on 100 have been between .6 and .9, which seems to be acceptable. Everyone responds differently. Do what you can to strengthen your immune system.... nutrition, acupuncture, whatever! Healthy wishes...

[Terilyn12 in reply to Buffwright]

Thank you - that is so exciting !!!

[Bobbie86]

My mum on same than you since diagnosis April 2018 and started on 125mg. Her neutrophils have never been over 2.2. Quite often go to 0.9 so she was put on 100mg but they still drop low quite often. Her latest scan results were better than expected so it’s still working

[Dianne417]

Hi, Terilyn12! My med onc started me on 100 mg of Ibrance two years ago, because I told him how drug sensitive I am. He told me, as so many of the ladies have replied, that it's just as effective as the higher dose, but with fewer side effects, like peripheral neuropathy. My neutrophil count was between .8 and 1.0 for most of the year, but recently "shot up" to 1.2. On the face of it, that would seem to be good news, but my latest scan indicates possible progression, so it might be a sign that my Ibrance/Letrozole combination is wearing off. I have extensive bone mets in my spine, with some spots in my pelvis and now right hip socket.

[mariootsi]

They had to lower my dose from 125mg to 100mg too because of low platelet issues. I have heard lower dose is as effective. Bless you and good luck on your new dose! Love, Marianne

[Terilyn12 in reply to mariootsi]

Good luck to you also!!!

[mariootsi in reply to Terilyn12]

Thank you!

[mjmom]

I just started 15 days ago. My WBC went from 7 to 3 in 2 weeks. I also have a cold. I haven’t had a cold in many years.

[mjmom]

youtu.be/g7e_diyIESE(Not working as expected?)

[demanos]

I was on 125 for 2 years. I've been on 100 now for almost 2 years. My last lab test showed all my counts were normal, for the first time. My CT scan is showing more arthritis than cancer. I'm glad I'm on 100; no more brushing my teeth with more blood than toothpaste. I feel I have fewer days of being as tired as I once was. I've read what everyone else said below and agree that tests show it works just as well. We are all on a personal journey. I can only speak for myself that life is a little better on 100 than 125. Take care Terilyn!

[Terilyn12 in reply to demanos]

You make me feel so much better about lowering the dose. It is so confusing that 100 can work as well as 125 — why have the 125 dose?!! Thank you and Merry Christmas!!

[Keylaw]

I just started my first cycle of ibrance. My dr started me at 100. When I went through chemo my counts would drop and I’d feel awful and couldn’t get off couch much less work. He knew I wanted to continue to work and he said there was no difference in effectiveness of 100. He said if I tolerated it fine I could go up to 125 next. But My counts have dropped this past week and my neut on day 16 were 1.6. He wasn’t worried about them but my platelets are very low. So he said if they aren’t up by Monday when my cycle is over he’s giving me platelets and changing me to 75. I don’t know why more drs don’t Just start on 100. I also got an upper resp infection week two when my counts were still great. My neut were 4.0 after day 12 and even after getting sick. But 4 days later they were 1.6. I’m scared to think what they are this last week. I still have the crud 9 days later and still don’t leave my house for fear of getting sicker. Only 2 pills left on Cycle 1. If mine aren’t better Monday I will gladly move on down to 75. I don’t want to chance getting sick and continuing to have to stay in the house. I haven’t worked in almost 2 weeks. So if going down to 75 will help get back to work I’m fine with it! You should do much better on 100!!

[Terilyn12 in reply to Keylaw]

Thank you!! I just struggled with moving down a dose. Now that I look back and my neutrophil hasn’t been above .5 in months, I realize it is time. I have heard from so many that 100mg is as effective as 125mg

[youngfarm]

Several dosages are used w Ibrance to get optimum results and not wipe out WBC. 7 days on and 7 off is one possibility. R U getting supplemental hormonal injections w Ibrance. I can not tolerate 125mg, so just began 100mg for next cycle to determine efficacy.

[Survivornow]

My Oncologist and I both just read a new study that said the lowered dosage of Ibrance to 100mg. had no effect on it's ability to fight or control cancer but did help with side effects like lowered WBC. So my dosage is now 100mg. So hang in there! It works! Prayers.