I have been on ibrance and letrozole for approximately 14 months. My oncologist changed my dosing protocol after about 3 months to 5/2/5/2 (5 on, 2 off etc) due to absolute neutrophil counts. I have also been taken off for one month when they “tanked” to 700. The 5/2 protocol has been better though my absolute neutrophil count is dropping again. She is now thinking we move to 4/3/4/3. Has anyone else had this issue and has the 4/3 dosing protocol been recommended. Everything else is stable I have been NED the entire time I have been on the drugs and am feeling strong with a bit of fatigue here and there. By the way, I’m 67.
My second question is, for those of you that have been on Ibrance for some time (I.e. 5+ years) have you noticed any cumulative side effects clinical or otherwise? For example, liver and/or kidney issues, dry thin skin, hair loss and texture changes, shortness of breath, muscle fatigue and/or pain, etc. If so what are they and is there anything you might have done differently, or did to lessen or reverse the symptoms? For example exercised more, changed your diet, vitamins and supplements, etc
Thanks for your responses in advance.
Have a blessed day!
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CalGal56
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Been on Ibrance (100mg after 2nd cycle) and Letrozole since 9/2019. Also have only fatigue as a side effect. My neutrophils are also low so I’m on a 3/3 schedule which we’ll works for me.
I’m 77 so it’s hard for me to tell if the occasional aches and pains I have are age or Ibrance related (I know i have arthritic joints). As my left lung was affected during radiation when I had breast cancer in 2010, my diaphragm is paralyzed, so I often have shortness of breath during exertion. Again hard to tell if Ibrance exacerbates that.
I’m just very grateful to have been given another 5 years since the day of my diagnosis when told MBC was terminal.
I’m in N. California and spend a lot of time at the coast. My oncologist says walking each day along the bluffs has contributed to my well being.
Hi, i just want to ask ciz im taking ibrance and letrozole. I need to take ibrance fir 21 days and reat for 7 days and then start ti take again. Do i need to stop taking leteozole also after 21 days and rest for 7 days? Or i need to continue letrozole? Thanks
Your oncologist seems to be taking good care of you! The fact that you have been NED the entire time is very much to her credit. Not all oncologists pay good attention to neutrophil counts. If I were you, I would not be second-guessing her advice!
I am now 79 years old. I had an easy, rapid menopause when I was 48. It was 12 years later when I first experienced breast cancer at age 60. By then, I had already experienced signs of aging (graying hair, skin changes, less flexibility, etc.) so I did not blame those on the cancer treatment (surgery, tamoxifen) I was given. My metastatic breast cancer was diagnosed in 2019 when I awoke one morning with a very enlarged right arm due to its lymph gland collapsing.
Although I take ribociclib (Kisqali), rather than palbociclib (Ibrance), my schedule has been 5 & 2 for well over 2 years now. I like having weekends off drugs so have not changed the schedule. Instead, I have reduced the amount of the drugs I take on weekdays to keep my neutrophils at a reasonable level. As long as my CT scans indicate that my cancer markers are not increasing, I am happier taking the fewest meds needed!
I have been stable for over eight years (!) on 125 mg. IBRANCE + 2.5 Letrozole, but my esteemed oncologist is FINE with my almost non-existant neutrophils. See attached July lab report image. I have breathlessness with exertion and the common side effect of arthalgia, joint pain---but I am alive! No, I am not plagued by opportunistic infections. There are clearly different schools of thought about blood lab results.
Hello CalGal 56. and the rest of you. My mother has been taking for long time now (more than 3 years) a regime of two weeks ON, two weeks OFF, and it has done the job so far, but just wondering how are administered these other regimes 4/3, 3/3 (do you know of any other ways to take it?). How many pills in a cycle you are suppose to take depending on each of the regimes you mention?
Thanks and keep it up! The more it lasts, the more treatments and drugs to come!
Have been on Ibrance/Letrozole combo since March of 2017. Started at 125 and reduced to 100 after a few years and now ay 75. Neutrophils have started to be a huge problem again. Having a blood draw tomorrow to see if I can start back. The first 5 years I felt good (considering). Now I am so fatigued and I keeping getting sick. Including covid which put me in the hospital along with a bacterial infection. But, will a change of drugs help my neutrophils? Will it give me energy? My body may be so loaded with poison that maybe I won't ever feel good again. My wonderful husband wants to do things, but I just don't feel like it most of the time. He is wonderful, but I feel guilty for putting him through this. I don't know what I would do without him. Celebrate him by having a glass of wine 🥂 in his honor. He's a good man and I am very blessed. Blessings and hugs to all. Hannah
Because of low platelets and neutrophils, my ibrance went from 125 mg to 100 mg to 75 mg in the first few months of treatment. The 75 mg dose is 3 days on and 1 day off for 21 days and then 1 week off. My counts are still low, but the medication is working. I wish Pfizer had a lower dose of Ibrance.
I am beginning year 9 on Ibrance and letrozole with NED. My fingernails have ridges and I do not have as much energy, but I am now 75 and many of my cancer-free friends have the same lack of energy, etc.
I am on Kisqali in my 8th cycle trying to control my neutrophils at this time. Reduced the dosage to 500 mg and last cycle was ble to reach the 100 mark on day 8 of week off. I will again take my bloodwork a bit later because traveling to New York and will see what happens. All of you who are doing the different treatment protocols on Ibrance , are these protocols suggested in the medication guidelines or are your doctors being inventive?
I know Ibrance has been around longer than Kisqali so I wonder if the oncologists feel more comfortable being flexible with the schedule.
Hi jltorcz - this is an interesting article on dosing. There is another article in the 2023 ASCO Journal supporting different dosing protocols. This may be a good read for your Oncologist. All of our cases are different, however I still talk with my Oncologist about research I find that may reduce the toxicity of the drug dosages. Thanks!
Very interesting article. Being on Kisqali, I am wondering if there are other protocols than the 3 weeks on and one week off regimen studied. I am actually on second cycle of reduced dosage and my bloodwork has been 8 days and now will be 9 days from last pill due to travel so it will be interesting what the neutrophils will be. I guess my doctor is flexible because this would be more like 21 days on and 9 days off, but this is not a regimen, just how it had to be due to my traveling across the country during the 7th day protocol. I would just like to know if my neutrophils don’t respond well enough to the reduced dosage, I can try a different treatment schedule before switching drugs.
Hi, I have been on Ibrance and letrozole for 4and a half years, with initial shrinkage and stable since then. Dosage was reduced six months ago to 100mg, due to low neutophil. Scans in June showed no change . I do have fatigue and changes to my hair and skin but I am 65. I will say my hair is not gray yet! No shortage of breath but my joints are a bit achy. I attributed this to the letrozole but who knows? I am just so happy and grateful to have this medicine. Wishing you the best!
I was on Ibrance and letrozole for 6 years and they worked wonderfully until they didn’t. I had a low neutrophil count on it usually maintained 900-1000 and was on the full dose 125 the entire 6 years. My only side effects were fatigue and my hair was brittle and broke. No pain and no lingering effects that I’m aware of.
After six years I had progression to both hips and am now on a pill once daily called Orserdu. I am blessed that it has also quieted any further metastasis. One year in and so far very little side effects other than gastrointestinal upset if not taken with a high fat meal.
Would you please tell me where your initial metastasis was? Mine is in my sternum and a couple of ribs but recently my hips are hurting like heck. I’m on Ibrance and letrazole for about 3 and a half years. Thanks for sharing
I have been on Ibrance for abt 5.5 years. I was on 125 and moved to 100 in three months after I got mouth sores. I have only been off for a week for Covid in March 2020 and a week for thyroid surgery in Nov 2020.
Some hair thinning at my part, but covered it with Color Wow and it grew back.
More annoyed by weight gain due to anti estrogen shots...faslodex or fluvestrant. Have foot drop due to either rads to my one hip spot or a shot.
But I still spend time in the pool here at the house. Joined a health club to do water aerobics. And since I know nothing about the machines in a gym I hired a trainer one day a week to show them to me.
Feeling much stronger. My oncologist said If I can lose weight without estrogen I should consider myself lucky! Very very hard. And it is. So I work on toning up and building muscle!
Hi, I started Ibrance 125mg 15 months ago but this was decreased to 100 mg a few months ago due to a low ANC .5 Now I'm on 100mg and the ANC is still going below 1 so checking labs in a week and will likely start 75mg. Recent research study shows there is no difference in efficacy in dosing. I suggested a different dosing schedule but she said the studies are based on a continuous dose so I dropped it. She is a breast oncologist with a major cancer institution in the northeast. I've read that if dose decreases start it is probably not going to be stable on the lowest dose of 75mg so that concerns me.
Lately, my skin and especially my lips are extremely dry. I drink a lot of water and wondering if this is Ibrance or letrozole or both. I don't have any noticeable side effects from Ibrance no matter the dose . I have been fortunate to be able to remain active on it. And yes, my hair is much thinner as the drug insert predicts. I plan to push for less dosing but staying on Ibrance since my scans have been stable if my ANCs are low on 75 mg.
My Ibrance 75 mg dosage schedule has been 3 days on, 1 day off repeated until I hit day 21–then one week off. This is beginning year nine for me on this schedule and I’m still NED. My neutrophils and platelets are always low! I wish Pfizer had a 50 mg dose. Many people are on schedules like this! My oncologist said I should change it to two weeks on and one week off, but then I would need blood tests every 3 weeks instead of every 4 weeks.
I love this option. We were planning to get me back onto the 3 wk on/1 wk off after two months of 5 days/2 days off, but my counts weren't as stellar in the the second month. I'm going to keep this in mind if my counts continue to go south. I'm on 75 mg too. I'm so happy you are NED and taking this for 9 years!
Thank you for your response.. it really gives me encouragement. My oncologist is very young, just finished her Fellowship and I wonder how to deal with her at times. She seemed too quick to dismiss this schedule which I have seen before within this platform. Look how long you have remained NED!! I'm very happy for you . Myself, I would not worry about the more frequent blood tests though I know what you are saying. I'd love two weeks on and one week off keeping the 100mg or even returning to the 125mg.
Hi, I have been on ibrance and letrozole for over 60 cyles of 21 days on and 7 days off. My dosage is 75. This has worked for me and I am doing extremely well. I am 81 years old and feel blessed for each and every day. I do get tired at the end of 21 day cycle and have asked if I could go to 5 on an 2 off and my oncologist said NO. So I will just continue on this schedule. It is working for me and keeping we quite well. I still enjoy life and that is what matters. Wishing you the best results too. Hugs Marlene
I just stopped taking the AI to test the theory that my side effects were related to E2 dropping vs the iBrance. Yup, two weeks later and I feel absolutely fine. In deciding to stop the AI, I did read the Lit regarding long term effects of a break. It looks like I could take at least a 3 month break within a 5 year time span without much change in longevity, so it was worth it for me to investigate.
These are the side effects that disappeared:
Joint pain (hands, feet, knees, hips)
Brain fog / Grey Mood / Lack of motivation
Sleep issues/night sweats
Hot flashes
Headaches/aural migraines
Belly fat is decreasing / 10lb weight loss in two weeks (fluid retention!)
Fatigue
Weird tendon pains throughout my body
Issues with balance and general walking strength
IMHO, MDs are not communicating (or even testing) which drug is the problem. You may want to check out this forecasting tool to see if it is worth it to stop one or the other for a month or two to see which one is the culpret:
This is so interesting. Have you seen the studies that say an every other day does of AI is just as effective? I talked to my doctor about. She said that she doesn't really recommend it for MBC, but seems like she has some patients doing it do other complications. I have been trying it on my week off just to give myself a break. I don't know if it's really helping, but something I continue to think about. I'm only 18 months into my journey. I did loose some hair and texture changed, but now it seems better. Joint pain comes and goes, but seems I'm tired a lot.
I'm 67 and self employed. Still working as much as I can. I try to walk and work out with hand weights, Get a message once a month. I have always eaten a pretty clean pescatarian diet but
I didn't look for those types of studies as I knew, for my mental sanity, that I needed a longer period to see what was actually being harmed. That's great that your MD is flexible.
I have been on Ibrance and Letrzole for almost 4 years and am currently NEAD as of scan in June. I am 69 years old. I have never had an issue with WBC or neutrophils and have taken the 125 mg dose the entire time with the 3/1 protocol. I am not really sure why some ladies get really low neutrophils and others are not affected so I don't know what might make a difference. I have had a lot of loss of volume in my hair and the texture has changed quite a bit. I can't really style it well, so I wear wigs if I go out for dinner, shopping or to the doctor. I They make me feel better about myself. I do still get it cut and colored every 10 weeks. I play golf and exercise pretty much every day and have changed my eating habits a lot since I was first diagnosed, reducing sugar, alcohol (not that I drank much to begin with) and drinking a healthy protein smoothie every morning. I do experience some joint pains in the morning but that is from the Letrozole and once I start moving, they go away. Plus I have been having a massage once a month which helps a lot. When I remember I take a multivitamin and a raw calcium/vitamin D supplement but my doctor won't approve other supplements. The protein powder I use has lots of vitamins in it that come from fruits and vegetables and I use Kefir, which is fermented milk, almond milk, a mix of berries with kale and spinach and add either flax seed, hemp seed or chia seeds (usually do a tablespoon of a combo of two of those. It is not always easy to be positive when on this journey, but I am very grateful for the time I have been given so far after the diagnosis and hope for many more years on this protocol. Best wishes to you. Sending you hugs and prayers.
I have been on Ibrance, letrozole and herceptin for 11 years. The only problem I've had is my hands crack but I use a steroid cream and wear gloves (cotton with nitrile over) when doing chores.. Im just about cancer free.Knock on wood..
Hi! I was on Ibrance for 8 years (98) cycles! With Fulvestrant injections and Xgeva every 4 weeks. My hair is very thin and slow growing now. My joints suffer from stiffness. I get some relief from glucosamine-chondroitin and Aleve... along with hydromorphone. I developed a chronic diarrhea problem for which I've sought answers for years. I had a colonoscopy this week which showed I had nothing wrong in there that should cause diarrhea, so we are under the assumption that it's caused by the years on these drugs.
The best piece of advice I can give you is IF you get this problem, which keeps you literally housebound, talk to your doctor about trying you on a bile acid sequestrant for the diarrhea.
I even went to one of the best cancer hospitals in the nation, and they had no answer for me.
I did my own research and found this treatment... for which there's not even a test in the US given to see if you have this disease. So I have officially been diagnosed with Bile Acid Malabsorption. My list of symptoms checked all the boxes. The most embarrassing and deplorable side effect I've ever had is bowel urgency and incontinence. I hope this info will keep others from having to go through these symptoms for years upon years!
God bless you all in your journeys. And keep on kickin' it!
You might also want to read about Histamine Intolerance and get your DNA tested. Many GI issues, especially those that appear after the age of 30 when our hormones drop, can be tied to high histamine... and the accompanying inflammatory response. As a "recovering vegetarian" who ate a lot of fermented foods (to be healthy!), avocados (for healthy fats), dried fruits, legumes (peanuts, chickpeas, and soybeans), tomatoes, eggplant, and "old eggs", this has been quite a journey.
I was diagnosed with histamine and MCAS, which can cause cancer, by my integrative oncologist who is part of my cancer team. (There aren't many MDs who understand HI and MCAS, unfortunately.) My MCAS was likely a response to many detox DNA SNPs and could be the cause of my cancer, as I have no known relatives with breast cancer.
Anyway, I hope this helps your GI issues. It may take a mental shift to move away from vegs, but if this is the problem, you'll find that it solves a host of other issues.
I’m not on Ibrance, but use the 4 days on and 3 off schedule for a newer AKT inhibitor drug called Truqap (capivasertib). I take the drug Monday through Thursday and have Friday, Saturday and Sunday off. The schedule works really well for me. I was told that this dosing schedule was chosen by the manufacturer of Truqap to limit toxicity and side effects. Other targeted therapies and CDK4/6 inhibitors are being prescribed using alternative dosing schedules, as well. So far, my neutrophils have been in the normal range. If your doctor is considering a schedule like 4 on/3 off for Ibrance, I wouldn’t be afraid of trying it.
I started Ibrance and letrozole December 2023. I was on 125 mg Ibrance to start. In June 2024 was changed to 100 mg because of very low neutrophils. I felt so much better - more energy, I had my appetite back and I took vitamin D3 November because of the letrozole that gave me full body aches including my joints. Then in July I have been taken off of Ibrance but I still take letrozole because I am doing chemo and radiation simultaneously for a different secondary cancer - SCLC. I even had to stop any extras like vitamin D3 which was really helping with the painful body aches from the letrozole. In this coming November I restart Ibrance at 100 mg since I will be done with the chemo and radiation therapy. And then I will be doing immunotherapy (it's an infusion once a month) for 2 years on top of the mestastic breast cancer drugs of Ibrance and letrozole. I have lost all my hair due to chemo.
Thank you Red1246, I am nearly through with the chemo - one more cycle to go. Done with the radiation and just got back from a seven day Alaska cruise straight to another 3 days of chemo. I only had one really bad day on the cruise with lots of pain from an "easy excursion" doing an Iditarod mushers camp and sled ride - rough ride even though just a mile. But got to play with the puppies afterwards - that was so sweet. I also had a diarrhea day too. But managed the trip despite the fact I have neuropathy in my left arm and hand and in the middle of treatment. Life has to be lived!
I have been on Ibrance/letrozole since May 2018. I started at 125 mg but after a few years that was decreased to 100 mg due to low neutrophils. The side effects I have experienced are dry skin, mouth sores, fatigue and weight gain. For my skin, I started taking fewer showers (and more sponge baths) and using a lot of moisturizer. For the mouth sores, I take zinc and rinse with salt water/baking soda and water. Have not figured out anything yet for the fatigue, but I might try Ritalin. Decided I would just live with the weight gain. Overall I have a good quality of life. I work full time and have many activities. However, I noticed that as time continued I was having more aches and pains, especially in my hips and legs. I decided to go to a personal trainer and since I started working with her this past May, the pains have gone away.
Unfortunately everything they do to us just causes another problem! Research everything before you take it.There are a lot of Drs out there that don't give a shit! Never follow blindly!!!!!
Hi CalGal! I have been on Ibrance with Fulvestrant injections for almost 4 yrs. I have experienced hair thinning, breakage and texture change (hair has always been stick straight to wavy and curly when I got it cut short to deal with the other issues) from the beginning and most recently shortness of breath. I am convinced that the breathing issue is being caused by either or both meds because everything else has been ruled out. . My Onc was quick to say “no that’s not it” and referred me to a Pulmonologist and Cardiologist who both did scans, breathing tests, heart monitor, etc. and nothing. I went from walking 2 to 3 miles at a time to not being able to climb a flight of stairs without becoming winded. I am frustrated at this point. I know on this message board that many others have said they are having the same issue. Why would it be so hard to acknowledge it could be the meds? From an MBC perspective, the drugs have worked wonderfully so not likely to have any change unless there is progression. I just can’t imagine what quality of life one would have if you can’t breath!! I’d love to know if anyone else has experienced pushback from their Onc team about breathing issues being a side effect.
Hi, I’ve been on Ibrance and anastrozole for almost seven years. My only regret was not insisting that the Dr lower my dose from 100 mg to 75 mg when my neutrophils were dropping and I had to take too much time off.
Long term effects: dry skin, less gray hair, fatigue, ….I hope I can stay on this regimen for a long time.
I’ve taken ibrance and faslodex for 6 yrs. My hair has changed, it’s thinner and I have weird patches of frizz. I used to color my hair but because of the texture changes I decided to stop. I’m 76 and expected to be white.It’s shocking but I have very little gray., my hair is dark brown. The only other side effect I had was that my eyelashes fell out. They’ve grown back but the color has changed from black to brown. All are side effects I can live with.
I’m so glad you had minimal health issues while on the cruise. It sounds spectacular! Yes, we must take every opportunity to live life! All best wishes for your continued successful treatment. 🙏🏻🥰
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