Lower Ibrance dosage?

[Trissh]

I have read in several places that Ibrance dosage can be adjusted without disrupting its effectiveness. Since my MBC diagnosis, I have been on Ibrance at 125mg with Letrozole for about six months and the fatigue and breathlessness are intense as I try to get back into some sort of routine workout schedule. It is working, just had improvement in scans, so I can live with it (and my blood work has been in an acceptable range) . But, I am very curious whether any of the folks on here have reduced the Ibrance dosage for quality of life reasons, and if so, have found there to be an impact on effectiveness. --Trish

[Gingerann1]

Hi Trish! I have been on 125 mg for 16 months and have tolerated it well but my Onc did tell me in the beginning that if I didn’t tolerate well with neutrophils being too low, etc. that it could be lowered to100 or even 75 mg. without changing efficacy. Not sure how that works but definitely a good question for your Onc. I have my monthly visit on Tues and I will try to get more specific info to share.

[Trissh in reply to Gingerann1]

Hey GingerAnn! My doc did offer to lower dose when I got first scans 4 months ago. But, since it was already showing improvement I was afraid to make the change. I will see her on Monday and talk about it again now that I have more information. The best of luck to you! --Trish

[Suzianna10 in reply to Gingerann1]

I too am on 125 mg (10 months) and I just wonder if 100 and 75 are just as effective why were we put on 125 in the first place ? Sue

[Gingerann1 in reply to Suzianna10]

Good question Suzianna10! I think on all the meds they tend to start at the highest dose to see if patient can tolerate but a lot of them seem to provide a better QOL at a lower dose so if they are just as effective, why not? One to add to my list for my visit on Tues.!

[sonycamera in reply to Gingerann1]

Hi Gingerann and all: My last blood test showed low WBC/RBC and hemoglobin. So my dosage has a been reduced to 100mg. I have been on 125 Ibrance/letrozol for 5 months. During that time my energy and tiredness has also reduced considerable. Since I am 81 much of the energy drain I figured was age related. Hope as my Ibrance levels are reduced my energy will return. Thanks so much for sharing

[Mermaiden]

Hello Trissh, yes I’m one of those that did step down, first to the 100mg, and then eventually to 75mg because of quality of life reasons. I also was neutropenic on day 15 with both the higher doses. Of course we all worry, will the lower dose be effective enough, but I’m 4 years and 4 months out from my metastatic diagnosis and have been NED (no evidence of disease) since. I’ve been on the 75mg at least 3 of those years, so it certainly seems to be working 🙏🏻. I’m sure you and your oncologist will make the right decision for you, and I send you love and light as you find your way through this.

[AutumnLove in reply to Mermaiden]

Awesome!😊❤

[DDIL1 in reply to Mermaiden]

That’s great to hear! First congratulations on a great outcome, second thanks for sharing! What type of Mets do you have if you don’t mind me asking?

[Mermaiden in reply to DDIL1]

I had a large met to the sternum. They radiated it, and had me on Xgeva to rebuild the remaining eggshell of a sternum, but I developed jaw necrosis, so no more Xgeva. I am hopefully enough bone was rebuilt.

[DDIL1 in reply to Mermaiden]

I have 3 bone Mets and lymph involvement. I want to radiate the Mets and trying to see what I should do about the axillary lymph. I want to get to NED

[viennagirl in reply to Mermaiden]

Bless you for sharing this information. It will give me courage to feel safe on my recently lowered dose of 75 mgs. Cheers Marlene

[atoth17]

Hi Trish, I have had my dose lowered twice, the last one being down to 75mg and alternating every other day with 100mg. I still have lower blood counts but this seems to be my "sweet spot" and my other side effects are more tolerable (I'm not so tired and the nausea is gone). I hope you can find the right dosage that will allow you a nice quality of life.

Allison

[Suzianna10]

I’m very interested too. It has been suggested to me to reduce from 125 due to side effects but up to now I have refused as I’d need some convincing that a lesser dose would be as effective. My oncologist says it would be as effective and it’s about finding the right level your body can tolerate. I just think 8 paracetamol are more effective than 2 for pain and psychologically use that principle. I’m sure I’m wrong but don’t want to play around and take risks with what is working. However, am open to persuasion and maybe I should be more trusting.

[KarenandLinda]

Hi TrishI’ve been on Ibrance and Letrozole since last October and have had a couple of occasions where I have had to wait a further week for my bloods to recover. This last month I’ve been on a reduced dosage of 100mg and am due for blood tests Tuesday will let you know how I get on but can’t say that I’ve felt any different with the reduced dosage although it’s early days yet and from what my health professionals have said it’s not unusual for this to occur

[8576]

Dear Trish: We are all different and what works for one doesn't work for the other. You and your oncologist can decide. wasAlthough, my oncologist was wrong to not allow me to go on one week off one week on. I was on two weeks on/off. The dosage was the same!

That is why I rely on a second opinion. Anyhow, you will be fine on the lower dose. There is plenty of articles written on this web.

Cheers, June S.

[Ilovehorses]

I was on 125 Ibrance and letrozole for almost 2 years. My scans are now clear. I too had been told initially that the 75 mg works just as well as the 125mg Ibrance. As my white cell count always drops low at the end of my cycle I requested to be put on a lower dose. I also experienced joint pain on letrozole so first did a switch to exemestane for a month before switching to 100 mg Ibrance. The joint pain is a little better and I think my hair is coming back a bit! I just started on the 100 mg dose last week so won’t really know if I have improvement in my tiredness till the last week I’m on it (when it zapped me on 125). I’m hoping for good results and if things maintain I’m going to eventually request going to 75mg I can’t see why we would want to put more of this poison (and it is a poison chemical even if it is cancer fighting) in our body than is necessary. I’ve often wondered what it’s doing to the rest of our organs It really can’t be good

[caw517]

Hi Trish , I started Ibrance at 125 but after severe neutropenia was quickly dropped to 100. I’ve been on that successfully for 5 1/2 years. Just recently things are changing so I may be going off ibrance . But I got 5 1/2 years which is great. Just wish I got more! We’ll see what comes next. Good luck with your decisions!

[DDIL1 in reply to caw517]

You had a good run on Ibrance maybe some adjustments can be made and you will find either another long term med or adjust this one with faslodex or something to keep it going. I can only hope to achieve that, I have some bone Mets and lymph but so far Ibrance is working for me.

[caw517 in reply to DDIL1]

Thanks for the encouragement. I've been on 3 different Ibrance combos---first with exemestane then when there was progression tried Ibrance with letrozole and then after more progression-- Faslodex with the Ibrance. Now here we go again -- progression-- so we are looking for new options. Fortunately, it is only in the nodes and multiple bones so far. New skin lesions have recently appeared, and we will be biopsying them to see if it is from the breast cancer... hoping not but I won't be surprised if it is.... We'll have to see what is next. Right now I am off Ibrance due to dental work . I am hoping that if I go back on Ibrance , the cancer will be "confused" and Ibrance will work again. Some have said a break kind of jump starts the work of the Ibrance. I am hoping that my onc agrees to try this. We will see.....

[Suzierox]

Hi Trish ☺️I was reduced to 75 mg within the first three months of treatment due to low neutrophils. I started at 125mg in February 2021, next month 100mg and landed on 75mg in April 2021. Quarterly scans have been stable, my last ones being just this past Thursday. Yay! Best wishes to you 🥰

[Melpub]

I had the same problem! I was on 125 mg plus Letrozole--this was, at the time, part of a clinical trial and I was trying to get back to ballet class. I got off the Ibrance completely. I later learned they should have done a hip scan and I should probably already have been on Faslodex--the tumor came back and now I'm on 75 mg. Ibrance plus Faslodex once a month plus Xgeva every third month. I'm 65. No more Letrozole for me--genomic testing revealed it wasn't doing anything for me (i.e. I'm apparently genetically or genomically programmed not to respond).

I have some breathlessness but much, much less on the 75 mg. That's been working just fine since March, 2018.

[AvidBooklover]

I was on 125 for a few months starting in April 2019 and had mouth sores and moved to 100. No issues. No progression.

[mariootsi]

Started out at 125mg. Changed to 100mg because of low platelets and worked. So far so good!

[mariootsi]

Also changed to 3 weeks on 2 weeks off.

[LadyKatarina]

I have been watching the FDA seminars on getting the "right dose." One of their concerns is getting not only oncologists but also patients to believe that a lower dose when proved so via clinical trial is as effective as the higher doses. Everyone seems to fall for the "more is better" thinking, which is not always true. The FDA just changed their rules for new drugs, and instead of the Maximum Tolerable Dose, all drugs must be tried at multiple dose levels. I don't have the links for these immediately at hand, but they can be found. You can start with the site the right dose.org and look for the table of drugs that have been tested at a variety of doses. Best to you! Kay

[Trissh in reply to LadyKatarina]

Thanks! I will take a look! --Trish

[seniorcitizen]

I also started at 125 mg but am now down to 75 mg and doing just fine. The lower dose can be just as effective as a higher dose which seems counter intuitive but so be it. It can seem risky to switch which is why one needs to research every drug

[Totheriver]

I dropped from 125 to 75 within the first few months and it has been almost three years and everything is stable.

[Bookclubof1]

I dropped to 100mg a few months ago and it made all the difference. My energy level is back up and consistent. My GI side effects are a little less intense too.

[Aquadog]

Hi Trish. My oncologist lowered my Ibrance from 125mg to 100mg about four months after I began taking it in February 2017 because my neutrophils were very low. I've had no progression and the side effects are doable. I used to struggle with afternoon fatigue crash until I began taking Ibrance at night - helped a lot. Also, I've read in many places Ibrance can be administered using different dosage schedules - for example, 2 weeks on/2 weeks off, or five days on/two days off, etc. People (with their doctor's approval) are finding creative ways to stay on this drug. Hope you figure it out and get rid of that nasty breathlessness and fatigue.

[Gramat]

I had Ibrance reduced to 100mg because of neutropenia August last year, in my case it works

[viennagirl]

Hi Trish, I started out on 125 for a couple of months and then the oncologist decided to lower it to 100 and I stayed on that for over two years and now have not had any progression and no evidence of disease. So my ONC has lowered it to 75 mgs. So hopefully I still stay well at that dose. If you are so tired from your dosage you might suggest lowering it. I did very well at 100. Best of luck. Stay happy and hopeful and Happy Mothers Day!

[Hopefulwmbc]

Trish, I was started on the 125 level of Ibrance January 2021 and had low neutrophils, extreme fatigue, loss of hair (I was ready to get a wig), etc. It was dropped to 100 then to 75 before six months were over. The 75 level allows me to go to the gym, out to see friends, etc. My hair grew back. The higher levels took the stuffing out of me. I had to go to three weeks on/2 weeks off with the Ibrance and that seems to be working. My neutrophils are over 1 with waiting the 2 weeks to test my blood.

I take Xgeva every 3 months or so. Letrozole every day. I get hand cramping fairly often and I did get severe leg cramps until I started taking electrolytes daily. I take Dr. Berg's electrolyte powder; you can get it on Amazon. So far, no progression. Next scans are next month. Good luck!

[hopehope67 in reply to Hopefulwmbc]

I am on 125mg, 3 weeks on, 1 week+3-4 days off with low WBC, fatigue, etc. My scans shows the disease is stable but marker CA 15-3 is 38 instead of being less than 25. So I'm afraid to ask my onc lower dose. What was your marker CA 15-3 when you switched to lower doses? Thanks!

[Hopefulwmbc in reply to hopehope67]

My oncologist tests for the CA 27-29 and not the 15-3. My 27-29 was over 1000 when I was diagnosed and has been as low as 130 something. It bounces between 200-300 now. I'm not hung up on the marker unless it really rises. I wonder what getting Covid vaccines does to the number.

[AuntC]

Hi Trissh,Like some of the other ladies, I started with 125mg. in Jan. 2019. After about 4 months it was lowered to 100mg. for a couple months and now I'm on 75mg. two weeks on & two weeks off. That seems to keep my WBC at a normal range. My scan last month shows that I'm stable, no active cancer. I'm 75 and feeling fine, no side effects. I pray it keeps working and also that you'll find the right dosage.

[ANNIE6449]

I was started on 75mg to see how I tolerated it. After two months with minimal side effects I was stepped up to 125mg. At that dose I had significant side effects and when my blood count got too low and I had two consecutive PET scans showing NED, my dose was lowered back to 75mg. I have since had two more PET scans showing NED and I do SO much better on the lower dose!! I am 68 now and very active and I truly believe that my athletic lifestyle and clean nutrition help A LOT toward keeping me cancer free!! I know my lifestyle keeps my immune system very healthy and that is so important when fighting cancer!!

Best of luck to you =)

[sevoia]

I am on 75 mg and am doing well. I have few side effects and my tumors have either disappeared or are not growing.

[Trissh in reply to sevoia]

That's awesome! My doc just lowered my dose to 100mg to try to alleviate some of the fatigue. I will let you guys know if it improves my energy level! --Trish

[hurricaneheather]

mets dx July 2015. started on 125mg in Aug 2015. it was reduced to the lowest dose at the end or beginning of 2016. stable, NEAD since Mar 2016. still on first line of treatment.