Has anyone had their oncologist push back about reducing the Ibrance RX from 125 to 100. My understanding is that they R equally effective.

[Kdiet]

Ibrance Dosage.

[Bestbird]

I am sorry (but not surprised) to hear your oncologist is pushing back about reducing the Ibrance dose. You may want to share this:

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.

[13plus in reply to Bestbird]

Exactly!

[hdhonda]

My oncologist at Moffitt didn't reduce my Ibrance until my neutrophils got down to .6. They are better now and I am hoping that he will increase it back to 125mg. I started taking a multi vitamin when it was reduced, so that may have helped increase my neutrophils. My last blood test they were at 1.68. l had seen that study, but still feel more comfortable being on as high a dose as my body can take. Blessings, Hannah

[blms]

Yes, I had as they want to stay with complete protocol and don't like to change unless symptoms are difficult to handle. I had nose bleeds, 10% of people, and was sleeping12 to 15 hours daily, etc. So, my onco whom now has retired, changed my meds without a problem. But, my new onco is more reluctant to change the basic protocols. I push for what I want. I did start with 125 as everyone basically does, I went down to 100 and never below that. I am now on taxol and have been aggressive to get what I want. First it was to stop the steroids. i brought it up initially, agreed to have it infused for first round of treatment and then made a point of reminding her before the next round that she said she would consider if I did not have an allergic reaction. So, I was able to get rid of that and am very happy with that decision, seven months later. If you want to go down, and I agree there is no, or very little, difference in the dosages, i suggest you exemplify any side effects.

[Hidden]

I started Ibrance in 2018. After a few months of crushing fatigue, my oncologist had no issue reducing the dosage to 100.

Made a big difference.

[8576]

Be your own advocate. I have heard of people going to 75mgs. of Ibrance because of Neutrophils. And this is an accepted dose. I had the same experience with Tamoxifen and found a study had been done that found that it is effective at 5mgs. as the 20mgs. usually prescribed!

I am fortunate to have a wonderful highly respected and very experienced oncologist to go to for a second opinion. My regular oncologist is fresh out of school and is very good but goes by the book.

wishing you all the best,

Cheers, June S.

[Kdiet]

Thank you all for your help.

[Southside25]

My onc had no problem reducing Ibrance from 125 to 100 to 75 due to low neutrophils and thrush. I've been stable at 75 for over 2-1/2 years (also taking letrozole). I'm also on a 5/2 schedule which I think has helped keep neutrophils within standard range. You're the patient; it should be your right to determine treatment.

[valentinecalico]

I was only on the 125 mg dose for 1 cycle and the side effects were such that the oncologist lowered it to 100mg. Like others have posted, it's my understanding that they are equally effective. Good luck!!

[Dragonfly2]

Hello Kdiet! I am in the same situation after being reduced to the 100mg dosage about 6 months ago. I used to drink alcohol regularly and was frequently struggling with resuming the meds after only a one week . I usually needed a two week break. At Christmas I gave up alcohol. Then I got my covid vaccine and that stressed my system even more. Finally I settled into a good rhythm on the 100. I asked my Onc about returning to the 125. Her response was that this is not a sprint…but a marathon. The longer your body can tolerate the med and keep blood numbers acceptable, the better for you overall. IBrance, as amazing a drug as it is, it is NOT a cure. More is not better. Your best outcome is based on creating a balance where metastatic cells are kept in check while your marrow can produce blood cells and keep this body alive.

Try not to stress about this. If we all live long enough to enjoy an actual cure, we’ll be lucky indeed. In the meantime, choose your poison carefully.😉

[Kdiet]

Thanks for your reply. I have been doing Ibrance for 2 years. In the last three months, the side effects have really increased: fatigue, heartburn, headaches, and getting out of breath. My neutrophils are always around .5 on Day 28 but I start right up anyway after a Neupogen shot. Am feeling like a failure that I cannot seem to tolerate 125mg as well as I used to. But I cannot seem to rally so am going to discuss with my Onc. Have also done radiation three times in three years. But it all seems to work.

Good for you on giving up the booze. As far as I can tell, there are really only two things all of my docs agree on: exercise good. Booze bad.

Thanks again.

[Hidden]

Mine was reduced during the first lockdown. My Neuts were low but not too bad, but my Nurse thought it was a good idea to keep them higher to help me fight if I caught Covid. I have stayed on the 100 mg dose ever since

[13plus]

I had started on 125 and my blood counts didn’t come back up fast enough. My onc just dropped me right down then to 100. Same result so she straight took me down to 75. Ironically I still needed 2 weeks break between but I was great for close to 3 years before needing to change drugs altogether. I recently read a study similar to what someone has already shared. That they found no discernible difference in survivorship for those who had had the smaller dose. I don’t think the drug company ever did studies themselves of the different amounts so some docs want to go only with the studied amount. Be your own advocate 💪 If your life quality has gone down a lot with the side effects you have every right to say you don’t want to stay on that stronger dose!

[Bestbird in reply to 13plus]

Thank you for sharing your thoughts! All too often individuals living with MBC suffer significant treatment-related side effects that could be mitigated by a lower dose. This is the reason I launched the Patient-Centered Dosing Initiative (PCDI) and we were privileged to deliver an oral presentation at this year's American Society of Clinical Oncology (ASCO). We are now liaising with the FDA regarding this topic. All are invited to visit the PCDI's website at TheRightDose.org

[13plus in reply to Bestbird]

Amazing and important work, thank you for devoting your time to this! And congrats on getting some recognition!

[Teddielottie]

I’m still sticking with 125 mg too .I have tolerated it well so far and my neutrophils are above the 1.0 min (day 28) , but my onc would drop me to 100mg if my neutrophils regularly dropped below 1.0. Fortunately I don’t seem to suffer from the fatigue and have remained ‘stable’ for nearly four years on this med .🤞

[hurricaneheather]

no pushback. this body is sensitive to medication. mets dx to right pleura and pleural effusion, July 2015. treatment began Aug 2015: Ibrance 125mg, Letrozole, 2.5mg, and Lupron quarterly. still on the same line of treatment. what's changed: Ibrance lowered to 75 mg and changed to Anastrozole by end of 2015. this year, Lupron was changed to Zoladex. noticeable decrease in activity with Nov 2015 scans. NEAD and stable scans consistent since March 2016.

[Goldenhair]

I'm not a doctor; just a tech. I don't know why your Oncologist would want to change from 125 mg to 100 mg. I've either been taken off Ibrance all together for 3 months due to low blood count, 1 week until a wound was able to heal or have been on my regular dosage. I did find this website which may help you:

Lowering Ibrance dose : Anyone else... healthunlocked.com/share-me...

My best to you, -GH

[stardust1965]

I couldn’t tolerate the higher doses due to constant low neutrophils so dropped to 100 and eventually settled on the 75. It was a dramatic change for my body and my energy levels picked up again. Hope this helps.

[AuntC in reply to stardust1965]

I'm also on 75mg. because of very low neutrophils, so I'm two weeks on & two weeks off. Everyone is different and we have to find what works best for us. I'm 75, I wonder if age makes a difference? I had no active mets in May, I pray everything is still stable when I go for my PET scan in two weeks.

Carolyn

[stardust1965 in reply to AuntC]

I really don’t know if age makes a difference to how well we tolerate treatments. It’s more likely to be a combination of many things or just random, like cancer itself. 🤔. I’m 56 and over the summer changed to my second line of treatment as I have active bone-only disease now.It’s great news that you are stable with no active mets. 🎉 I hope you continue to get good scan results in two weeks. 🤞

[AuntC in reply to stardust1965]

Thank you!