Ibrance dosage for those 3+ years

[Greatday2]

Hello everyone. For those of you who have been on Ibrance 3+ years.... what dosage are you on? If you are NED, did any of you get your dose lowered based on the NED scans? Did any of you just want to be at a lower dose to have your bloodwork better? And did your doctor agree to that? I know that usually the dose is lowered due to low blood counts. Just wondering if it could be lowered just for better bloodwork numbers (even if they aren't "too low").

[2Hopeful]

I’ve been on Ibrance 100 for 4 1/2 years. Have never changed dosage. Not NED but remain stable. My blood counts hold up good enough that it hasn’t been an issue so far.

[Greatday2 in reply to 2Hopeful]

Thanks for your reply. Glad to hear it has been working well for you! So you started on the 100 dosage?

[2Hopeful in reply to Greatday2]

Yes. Originally diagnosed in 2001. Had surgery, chemo radiation. Seemed ok until 2015 when a tumor was found in brachial plexus area after I experienced numbness in fingers and hand problems. Had more chemo, tamoxifen for about 4 years until I had some progression and then put on Ibrance and Letrozole. So far, so good. It’s never spread to bones or organs at this point.

[Discocat]

Hello

Around 3 years 7 months since diagnosis. Have been on ibrance for about 3.5 years at full dosage 3weeks on one off.

Scans remain stable with NEAD....no evidence of active disease...but since I have multiple bone mets from skull to pelvis I'll never reach NED....it's actually extremely rare with doctors to ever say a stage 4 patient is NED ....that would mean being in total remission with no sign of any residual cancer cells.

Have annual full body nuclear bone scan this Wednesday....takes 3hrs!!! So fingers crossed for that!

Wishing you all the best

Zoe

Xx

[Greatday2 in reply to Discocat]

Wow that's a long time for a scan! Wishing the best for you! Let us know about your good results!

[Discocat in reply to Greatday2]

Thanks

Actual scan time ....in the machine is 1hr...but 2 hrs before is having the radioactive trace injection...drinking lots of water and waiting in isolation for the trace to disperse throughout the body in preparation for the scan process.

Had 1/2 body CT last week and results show stability so hopefully the whole skeleton will also remain the same.

[Kdiet]

I am in my 60th month of Ibrance . I am ER+. One year ago, to deal with low neutrophil counts, I was lowered to 75mg. I have two oncologists. Neither will take me off Ibrance or Letrozole. They do not use the term NED but one feels I am in remission. I still get very very tired days 23-27 when I am having my week off and try not to schedule anything important during those days . My best days are those filled with easy distractions. Overall, I consider myself lucky.

[Greatday2 in reply to Kdiet]

Thanks for sharing. I'm glad to hear about your success!

[Artesa]

Hi Everyone,

My blood marker Ca15-3 has been 46-47 since I was started Ibrance and letrozole in June, 2023. It was found in my sternum, ribs, hip, but since I've been on Ibrance , now 100 mg with letrozole the scan shows no evidence of new metastasis. So do the active cancer cells just stay put or could the markers be indicative of dead cancer cells. I get the zometa infusion for my bones and so far it shows sclerosis markings which I interpret as healed scarred areas. I try to envision the cancer cells as flowing through the bloodstream since there are no solid tumors. Why isn't the blood marker within normal by now ? Should I assume the medications have killed off other cancer cells?

[Greatday2 in reply to Artesa]

I can't answer your question about the CA 15-3 markers but hopefully someone can!

[love2golfwell]

I have been on Ibrance 125mg for over 4 years. Had been NEAD until recently. My White blood counts and ANC have never dropped really low on this dose so it has never been lowered. I have tolerated it well.

[Greatday2 in reply to love2golfwell]

Thanks for your reply. Wishing you the best

[love2golfwell in reply to Greatday2]

Thank you, wishing you well, also.

[Dragonfighter]

Hi and welcome. Not a group you ever want to have to join but you will find lots of caring and support here. I have been on ibrance and letrozole for almost 5 years and had the dosage reduced to 100 mg about 8 months ago, due to low blood counts. My oncologist says it will probably have to be reduced again in a couple of years. I take that as a positive note as it indicates she believes it will be ok as is for that long! No real symptoms other than fatigue.

Great quality of life and very grateful for that I am not ned but am considered stable. Best wishes for you. Oh, I had significant shrinkage after the first two scans, no change since. I have one tumor on my spine, her2 - hr +

[Greatday2 in reply to Dragonfighter]

That's great to hear about your success on these meds! Thank you for sharing. It's an inspiration to us all!

[MaryCos]

I have been on Ibrance 125 since late September 2020. My counts aren't "too low" but are lowered as a result of the meds, meaning... I am not in "normal" range. But my side effects are pretty nominal (although I DO have some), so I have not requested a dose reduction. Maybe my nausea and other things would be less, but I am NEAD. So, I ain't gonna mess with what is working for me! Oh, and no fatigue. I feel quite lucky all the way around.

[Greatday2 in reply to MaryCos]

Thanks for your reply. My dosage of 125 is working well also. Glad to hear it has been working so well for you

[MaryCos in reply to Greatday2]

I HAD considered potentially dropping down to see if my labs might be even better and whether my relatively mild side effects might disappear entirely. Gonna keep it real on that. I THOUGHT about it, although, again... I don't want to fix what isn't broken! Maybe there will come a time where I need to drop down. I've decided to ride this as far as it will take me, and decided not to mess with my good fortune!

[Lilywallytootsie]

I was diagnosed with stage 4 BC with Mets to lungs in spring of 2017. Was put on 125 mg of Ibrance/Letrozole. Later reduced to 100 mg and last few years to 75 mg. It was reduced due to fatigue which I still have but Ibrance doesn't go lower and I am not going to change from something that is working to try something else. It has been a good drug for me. I wish that I had stayed on 125 mg since I have fatigue anyway. I should talk to onc about working my way back up. Anyone ever done that? Wonder if it would make a difference at this point. Should point out that I am retired, married and have grown children but no grandchildren. It means I don't have obligations or distractions others may have. I wish all of you the very best. Hugs, Hannah

[Greatday2 in reply to Lilywallytootsie]

So you've been on it for over 7 years?! Glad to hear it is working so well for you! Did your blood counts improve on the lower dosage?

[Lilywallytootsie in reply to Greatday2]

My blood counts did improve but are still below normal. Hannah

[Mimiholl in reply to Greatday2]

No but have remained steady in the low range , so I’m happy

Mimi

[JKMS]

I was diagnosed in August 2020 and have been on 125mg of Palbo and Letrozole. Have been NEAD since October 2021. No discussion about reducing the dose but I have minimal side effects so that is one of the few things I haven’t queried! Wish you well xx

[Greatday2 in reply to JKMS]

Thank you for sharing. It's good to hear about your success on this combo!

[Ara31]

Hi, I´ve been on 75 mg 2 weeks on, 2 weeks off for 3 1/2 years. I started with 125 mg, had to lower because of low neutrophils. Stable disease so far without other side effects from Ibrance. Wishing you the best!

[Greatday2 in reply to Ara31]

Thanks for your reply. Are your blood counts in the normal range on that dosage and schedule? (WBCs, RBCs and neutrophils)

[Mimiholl in reply to Greatday2]

I’m still on 21 day cycle,I’ve had to go off all meds when I had knee. Replacement, broken ankle and Rhabdomylosis. So far God willing I’ve been blessed

Mimi

[Ara31 in reply to Greatday2]

Hi, RBC is in the normal range, WBC and neutrophils are lower than normal. But it is never worse than grade 1 or 2 neutropenia. Thanks god so far I have not had more infections than before starting Ibrance. My doc suggested that I could switch from Ibrance to Verzenio, but because I have no side effects on Ibrance besides the neutropenia I prefer to stay on Ibrance until it stops working. I am afraid of changing a running system 😉

[Mimiholl]

I’ve been on ibrance and letrozole since 2017 currently dosage 100. Lowered once due to blood tests ,I am NED too.

[Greatday2 in reply to Mimiholl]

Thanks for your reply. I'm so glad to hear about your long-term success! Are you blood counts in the normal range on this dose?

[Gingerann1]

I have been on Ibrance just over 4 years with Fulvestrant. Started at 125 mg and was lowered to 100 mg due to side effects. Got to NED after 15 months (will be 3 yrs in March with clear scans). Next scans are in Feb. Praying to stay the course with this combo with no progression.

[Greatday2 in reply to Gingerann1]

So glad to hear about your long-term success with those drugs. Thank you for sharing. Are your blood counts in the normal range on the lower dosage?

[Gingerann1 in reply to Greatday2]

Yes. Much the same as with the higher dose. I was “allowed” to take a 2 week break at Christmas for traveling and hosting the holidays because I’ve done so well. My Jan. Labs were all in the normal range. My neutrophils were 3.3! Short lived I’m sure but it was nice to have a break and experience that. They usually fall in the 1.5 to 2.0 range.