Anyone else have their Ibrance dose lowered, and found it helps with side effects? I have asked my onc to consider lowering my 125mg Ibrance to 100. I’ve read the 100mg dose is just as effective. Anyone else lower their dose? Did it help side effects?
Also at onc suggestion, I’m about to switch from exemestane to faslodex, hoping to reduce side effects. Anyone else?
Thank you.
Btw I am MBC with bone mets. First diagnosis was 2010, stage 3. Returned almost nine years later. Cancer sucks!
8/2/2019 UPDATE: Just started lower dose Ibrance, now on 100mg, no longer taking exemestane (AI), getting faslodex shots instead, and continuing monthly Xgeva shot. Crossing fingers and toes I get some relief from these side effects and the new regimen keeps working on the bone mets!
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I’m on Ibrance and letrazole...only took 125 mg for 2 weeks..now on 100 mg for a year...my oncologist has only one patient on the high dose....says it all!!
Why we’re started on the high dose mystifies me as the lower doses work the same from what I’ve learnt on here...those side effects are hideous so why make us suffer?... I guess it’s to obtain data for the pharma company
Me too. Im ok on the 125 apart from neutophils drop. May have to go down to 100 if it goes below 1 again at which time I'll quiz the Onc and pharmacist.
I know many women who are on the 125 mgs and feel fine. They feel the same on their week off. So I guess oncos go with the highest dose. Not everybody has the nasty side effects. One woman I know has been on 125 mg. of Ibrance for over 3 1/2 years and still works full-time as a 5th grade teacher. For some of us, it is a horror. I guess the oncos start out with the 125 mg. bc many can handle it. But I have read about women who had it lowered. I had to take naps every day and that was hard (I am on SSDI). Now with the lowest dose of Verzenio, I feel normal. I don't have to take naps, sometimes feel a bit tired, almost feel normal. Verzenio though, according to the research, lasts about 16 months whereas the Ibrance I believe if you can get through the first year lasts much longer. I don't care. For me its a quality of life thing.
Everybody is different. From a former forum board I was on, there were many women on the 125 mgs. and they felt fine. No side effects, except for some fatigue, and felt the same on the week off. MY three weeks off (only lasted three cycles) I got scary sick. So they try the highest dose first bc if it works for you, that is great but some of the women had the doses lowered. I could not believe that for many women, they had no side effects except for minor ones, and they felt the same on their week off.
Years ago a stage iv would have meant terminal. These days with the new meds, it is now considered incurable and I know many women who are stage iv for seven years. That is not terminal to me, it's a chronic illness. That being said, it's different for women with triple negative or inflammatory breast cancer that have it harder bc our meds are for hormonal. So we need to be thankful that these meds are there for us now. Of course, they will never know for several years if there are any other side effects.
Right from the start I could not tolerate 125 mg ibrance and it was stopped after 3 weeks of pure hell. Then I refused to take it. I was on faslodex already. I restarted ibrance 75 mg in nov 2018. I have been tolerating it. Also on xygeva. The 75 works just as effectively.
I only lasted three cycles on Ibrance (125 mgs). At first the first two weeks I felt nothing. Then during the third week I woke up one day and felt like I was beaten with a bat and could barely get out of bed (my first experience with these type of heavy duty meds) but the worst (and my onco gave me no warning) was my week off. I could not wait for it thinking I would feel better but I felt so sick. I basically laid in the bed for a week and cried. Shivering, throwing up, headaches, OMG. A minor infection that I have gotten on my upper thigh (infected cyst) used to easily go away with antibiotics but the Ibrance had destroyed my immune system. Five weeks of antibiotics and nothing and I was in pain. I had to have surgery on my thigh, they cut tunnels. The recovery was unbelievably painful and I had loads of stitches that came right out. What should have been a month recovery took four months because my wounds were not healing. I am now on Verzenio. First 150 mgs. twice a day...I could not handle it and stopped after a week, then 100 mgs. twice per day and I felt awful and was so sick and I told her this is not worth it if I have no quality of life. Now 50 mgs. twice a day and that was the trick. That is working now and I dont have fatigue and the side effects are minimal. I was so happy NOT to go back on Ibrance but my onco didnt offer to lower the dosage but I hated it but the Verzenio now for me at 50 mgs. 2x a day is the trick.
I wouldn’t say destroys our immune system, but seriously compromises it. It’s why they track our WBC, RBC, and neutrophils, and each month I have to answer lots of questions prior to their issuing the next month’s prescription.
That is what I was told which is why they said to avoid people that are sick, constantly wash your hands. Destroy was the wrong word for me to use, it severely comprises your immune system. Which is why a simple infection that I would get in my upper right inside of thigh for years, I would get an rx for antibiotics and it would go away for another year. This time after only three months on the Ibrance, it got progressively worse until was decided I would have to have surgery. The surgery was very invasive (first they wanted to make a big hole in my leg and take skin off my back and I was like Oh No). So my onco found me a plastic surgeon (I learned after he had never done the groin area). It was hell. I was told by all three surgeons that the recovery would be painful. It was worse than that and I live alone. Wound up at ER twice. Was on high dose of percocet. I literally had holes in my leg that were not healing up. I had to have a nurse come every single day to medicate it and bandage it bc it was in an area I was unable to do. So I think that scared my onco a bit (I know its the Ibrance that made this happen). I was happy bc I hated the Ibrance. Very happy now with 50 mg. of Verzenio twice a day. I feel normal.
Side effects are brutal...my hair thinned out that I had to buy a wig..my feet started peeling..used cocoa butter helped..taking naps in the afternoon..sleeping is uncomfortable must take a Zanex to help fall asleep...taking 100 mg of Ibrance..also on Letrozole and Exceva..this cocktail is working with the help of God so I’ll take the side effects
Yes I can’t believe how much my hair has thinned and continues to! It breaks off at shoulder length too. Fingernails wrecked. Lots of extremely dry skin and peeling. Lots of neuropathy in my hands and very stiff fingers. I’m hoping to have a noticeable difference by lowering the dose. Thanks for replying!
When I was on the Ibrance the skin from my hands was coming off in sheets. I had to go to a center and they needed to take my finger prints and could not because they told me I no longer had finger prints.
I have numbness and tingling in my hands. And I was told by naturopath dr to exercise and move my arms when I walk. Guess what!!! In the 4th day walking my hands didnt got numb while I was sleeping. I usually wake up every day bc my hand hurts! But I have two good nights! It doesn't hurt to try to see if help u.
Regarding Ibrance I was on 125mg and in less of 2 weeks my white cell count when to 1.4 so they told me to stop. It took a month to go back to 3.4, so they want to reduce to 100mg but i said i want 75mg. They were okay to give me 75mg since my last scan was clear except my spot in my spine.
I am going on 75 mg. when I finish this cycle of 100 mg. I coz didn't want to waste the medicine; if I continue that is, which I am most likely going to after all my ranting; I just like to know the facts! I started on 100 mg. as I told my onc. I didn't want it if I had to take the high dose coz I didn't want to be ill. I tolerated the 100 mg. ok but recently too many crying jags and headaches, not to mention blurry vision. <3 xo
My onc agreed to lower my dosage to 100 two months ago. I had crushing fatigue and the lower disagreement helped a lot.
I’m on Ibrance and letrazole have now since October 2018, no side affects apart from the hot sweats etc, they lowered my dose to 100mg as my bloods were crap and I had to have 2 weeks off and not just the one
I had bc 11 years ago and now it’s cone back in the pleural lining of my lung, but go figure had a full mastectomy with recon and the dam thing came back in my false boob, only noticed when they told me I had a pleural effusion
So I’ve had a lumpectomy on a mastectomy
Any way I’m 44 this year with two girls aged 20 and 14 and I’m praying the combo of drugs last for many years, I’m still working as a fitness instructor and living my life as I can Pma all the way and a good oncologist
Have they said anything about operating or do we just to see if it spreads, I’m still trying to live my best life and feel fine, that’s what I’m saying to myself daily
When I had a thoracoscopy in Feb 2015 the Cardiothoracic surgeon told me that the tumors were inoperable. I asked the Cardiothoracic surgeon what he saw. He told me if you took a salt shaker and sprinkled it over the pleural membrane everywhere a grain of salt fell I had a tumor. There was a concentration of "nodules" at the base of one lung. 😓 A devistating image. It brought to mind horror stories I had heard of patients taken into the OR for tumor resection surgery and no surgery was done (other than to "open" them up) because they saw so much cancer spread everywhere that they just closed them up and said there was nothing to be done. The lung itself cannot function without the membrane. Well, after at least 6 months on the ibrance/letrozole combination I was NED. Scarring still present but no evidence of active tumors. So in answer to your question, in my case I am inoperable but it appears that the tumor growth has been brought under control by my treatment. If your tumors are on your pleural membrane like mine were you may be the same however, please check with your doctor about that because I may not know everything about your situation and would not want to misinform you ❤.
Also have fluid on my lungs but have a drain in my side an being drain once a week...was told it was not cancer...praying for it to minimize so I can drain removed
Was told fluid was not Cancer...was checked by Thoracic Surgeon who inserted tubing for draining...they told me it takes awhile for it to stop....praying it stops..
I was told once it starts spreading again (Verzenio is only supposed to have an average of 16 months before progression, Ibrance much longer). But my onco said once a med stops working, there is always another med to try.
I am with met bones after 4 years of breast Ca. Now I am on letrozole and IBRANCE 100mg. I did start with 125 mg but due to side effects we change them at 100mg. I am really well I do not have any side effects and my MRI &CT are really good. I am now on IBRANCE 100mg from December 2018. So speak with your onc and change them if he agrees to.
Just switched from 125 to 100...and on day 8 and feeling good. Though I was usually good til day 14 and then mouth sores. Definitely ask about switching! I had a few 125 left (had to go off previous round early for mouth sores) and I took one every other day at the start of this cycle, as per the doctor. To not waste them.
I have thrown out so many meds. I will not continue to use them "just to use them up" if they are making me feel sick. I was on Ibrance for only three cycles and had some nasty side effects, more the fatigue and my week off I got scary sick. It was August last year and hot and humid and I had to turn off my central air and I could feel how stuff my apt. was getting but I had on two robes, was laying in bed with several blankets and my teeth were chattering. I had a rough time on the week off.
I remember when I first started Ibrance I was like ‘oh good, the week off will be my good week...’ NOT!!! It is awful!! Then when I added the Xgeva shot to the off week, holy moly, help! I hope and pray switching the dose will make a difference!
That is the odd thing. There were women like me on the forum board who were so sick during the week off and many others though that they said felt no difference whether they were on it vs. their week off. Just goes to show you the same medication can affect each person differently.
I was lowered from 125 to 100 Ibrance also mainly because of platelet count. It has made a difference.
I'm also getting Faslodex shots and find the side effects easy to tolerate. Just fatigue from both. I wish you well in your treatment change. I hope you find it beneficial.
I am in the 75mg after trying both of the other dosages. Mine was lowered because my neutrophils always drop low and it takes three weeks for them to improve.
Hi Stink, I was on 125 mg. and Onc.lowered it to 100. My Cancer immediately came back. So now I'm back on infusions. But I know other women that are down to 75mg.and no problems.
😂😂😂 that really made me laugh ‘Hi Stink...’ but very sad about the recurrence. 😰 Did you have a recurrence or progression of a recurrence? I was diagnosed 2010 Stage 3 lobular, did chemo, bilateral and radiation. Reconstruction later. Had almost nine years before that bitch came back in my bones. I have bone mets everywhere in my torso. Completely asymptomatic until I started this treatment 🥴🤦♀️🤷♀️ Hang in there!
I have been on 125mg Ibrance dose since early March 2015. My cell counts (RBC, WBC & Platelets) are always low, but have not been low enough to stop treatment, pause treatment or treat for low cell counts. I am pretty tired but still feel I have decent quality of life. Other side effects I suffer from are muscle/joint pain, VERY dry skin, hair and nails, headaches, mouth sores, and very dry nasal passages with occasional nasal sores. When I read that is sure seems like a lot, but hey, I'm still here as as I stated, I feel I have a pretty decent quality of life! I do my best to take care of myself and get plenty of rest and avoid stress as much as possible.
Yes, CANCER SUCKS but I will fight it back with all I have.
Yes, I have. But I had horrible mets in my left lung. I was very short of breath and twice had thoracentesis to drain fluid from the pleural space and I also had a chest tube for several months. Although my pleural membrane is now scarred the mets are gone. I now have moderate shortness of breath with activity vs severe before treatment. It frightens me to think of changing what is working. Truth is, there is just no way to know what would happen if the dose was lowered. Also, if i lower the dose and the Ibrance stops working there is no way to identify with absolute certainty that it wasn't going to stop working regardless of what dose I have/had been taking. So, because I am able to tolerate the treatment without a "greatly" diminished quality of life, I will keep things as they are. It's a decision that is very personal for each of us. Just like those persons who choose to forgo traditional medical treatment and go with alternative or "natural" therapy.
I take 100 mg. of ibrance and a letrozole daily. I started with 100 and had read that many women taking ibrance are on a 5 days on 2 days off schedule, as a matter of fact, there is a study going on for that dosing schedule. They say the 2 days off allows the bone marrow to recover a bit. That is what I decided to do from the get-go and I have no pain and hardly any side effects, plus my neutrophils stay high; I believe that is what makes you feel so bad, the low wbc's. after just 2 cycles my shoulder is healed and several spots are shrinking and two they can't find, so I just wanted to tell my experience so far. I will have a bone scan in August and will know more. i also take ginger root capsules for hot flashes; three in the morning down from six a day to three. I don't take anything but ibrance and letrozole, along with calcium 3 times a day. God bless you and heal us all in Jesus name, amen!
I have been on Ibrance now for 3 years -- 40 cycles ! I was only on 125 for one cycle as it left my counts dangerously low and me feeling so fatigued I couldn't bear it. Since that first round I have stayed on 100 mg and only had to postpone starting a round a few times due to extremely low counts.So far it has kept my mets "stable" . This is truly an insidious disease. I understand your feelings about it coming back. I was first diagnosed in '96... chemo and mastectomy ! then it came back -same side !!-- and I had radiation on the chest wall after removing my reconstruction . that plus arimidex for 5 years and I hoped I was good to go....but then 3 years ago it reared its ugly head with mets to my bones in multiple areas including my sternum which is where the actual tumors were visible!! So now ibrance and exemestane…..Just had my PET scan and am awaiting results once again. So hoping for stable !!! Hope this helps-- stay positive and diligent is my best advice !!
Yup I have spots on sternum, ribs, my L1 vertebra, pelvic area. Yay me! 🤦♀️ Not!! It’s still hard for me to believe that bitch came back years later, but I’m learning lobular is sneaky that way!
Yes, had mine lowered from 125 to 100 after about 6 months. I noticed less fatigued. I have bone mets only and cancer returned AFTER 17 YEARS!! 😫😫 You’re right! Definitely sucks, but good luck and prayers to you on this shared journey. 🙏🏻🙏🏻❤️❤️
Wow THANK YOU everyone for all the comments!! So helpful to read and hear all of your varied experiences!! I am so thankful to each and every person that replied. I am hoping the new combo of lowered Ibrance, and switching from exemestane to faslodex will make all the difference. I tend to be a cheerful optimist, and brave soldier, but after being in this current combo since late last year, I’M OVER IT! I need relief! Thank you thank you all! I deeply appreciate the input and support! 💗
I am on the higher dose and tolerating well. However I am also a breast cancer nurse. Most of our patients are on 100mg. They have looked at 100 verses 125 and found same efficiency but no one to my knowledge has studied the 75. It is prescribed at 125 but many need the dose reduction. Cancer does suck. I had Dcis 13 years ago with mastectomy and reconstruction only to now be diagnosed stage 4 with bone Mets from a new tumor in the axila on the reconstructed side. But still working full time , living my best life and not letting it stop me. Best to you and all the other warriors on here.
I’m on the 75 mgm dose, having been lowered from 125 to 100 and then to 75 over just a 3 month period due to low white counts. My white counts are now stable with neutrophils running around 2 at the end of my week off. I continue to struggle with exhaustion during that week off but have no other side effects. My bone lesions and the one node under my arm all were NED when I had my first scan 4 months after starting Ibrance. I hate to change anything since it’s all working so well (I’m a year out now) but might ask on my next visit if doing 5 days on and 2 off might cause less exhaustion and if I can try it. Elaine
I never heard of the five on, two off thing. So you don’t do the 21 day, 7 off? All month it’s 5 on, 2 off? Interesting. Where can I read about that I wonder?
I’m doing the usual 21 days on and 7 off but I’m very exhausted on the 7 days off and part of the first week back on. There are a few here that are doing the 5/2 routine. If it helps make some of the exhaustion go away, it would be worth trying. I have at least 3 days in that week and a half where I just seem to nap all day.
I started Ibrance at 125 (16 months ago) and didn't have hideous side effects, but did have GI issues (runs, gas, constipation - some or all of the above) and thrush(?) mouth plus low neutrophils resulting in having to be off the drug for an extra week, which I've read is not good. Lowered to 100 and now I'm on 75. Tumor has reduced over the 16 months and SE are definitely better. I have lost a great deal of hair, but generally feel okay. Some muscle stiffness, but onc says that's from the letrozole. I've read that it appears that if the Ibrance works for you, it works regardless of dose...75 is as good as 125. Supposedly this is going to be published sometime in the future. I'm going for my quarterly scans on Monday and will see how I'm doing on 75 for the last 4-5 months. I would certainly try the lower dose and see if it helps with your SE.
I just replied to you, but forgot to mention one thing. If you're having GI issues, particularly constipation, a magnesium supplement is definitely helpful in normalizing stomach problems. I take one, I think 50mg, a day and it really helps.
First of all, I literally laughed out loud at your comment. Thanks, I needed that.
Secondly, I think it helps gas. I've never had stomach problems in my life so I usually can't identify exactly what I have, except, obviously, the runs...that sort of thing. I do think I had gas in the form of fairly intense intestinal/back pain although now that I think about it, I did belch a lot. The magnesium just seems to keep everything moving through the intestinal system. I just buy a cheap brand - maybe Nature Made - at Target. I ran out and forgot to buy more, and within a couple of days, pain, etc. resumed. When I started back, it stopped. It's cheap enough; it wouldn't hurt to try it.
Hi, my dosage was just lowered from 125 to 100, so I'll let you know. I sure hope it helps like I have heard that it does. I've been on ibrance for a year. Became NED in January of this year. I switched Dr in April of this yr & glad I did. At appt. In June he didn't like my low wbc & the fact that my side effects were getting worse. What he said was music to my ears. He said "you need a better quality of life, so Im going to lower the dose"! Just got my pills Thur & mine, at 100, are smaller! I'm on ibrance and letrozole to keep the cancer from coming back. Also we are working on strengthening my bones because that is where I'm told I would get it if it did come back. I have a bone scan & CT & Pet in Aug. & then see Dr on the 30th of Aug. Prayers & blessings to you.
I had my Ibrance lowered twice so now at 75mg with very few side effects. I think Pfizer’s protocol is everyone starts at 125mg which apparently is harder to tolerate. Blessings to you.
Im going to make it my mission to contact Pfizer and whoever else to try find out more about these dosages. Its so unfair making people suffer on the 125 dose if the 100 and/or 75 really are just as effective. We have enough to contend with without being golden geese for the drug companies - assuming its worth more money to stick us on the higher doses?
It seems to be the same price. "How much does Ibrance cost with insurance?
The cost for Ibrance oral capsule 75 mg is around $12,387 for a supply of 21 capsules, depending on the pharmacy you visit." I know many women who do fine on the 125 mgs. of Ibrance so I believe that is the suggested first line of treatment dose. I had issues with Ibrance but many other women were on it and feel the same on or off the Ibrance "off-week" while some of suffer during the week off. I know one woman who has been on the 125. Ibrance plus falsodex injections for over 36 cycles and still works full-time as an elementary school teacher. So it seems it would make sense to try to the highest dose and then if it does not work for certain women, trying lowering the dose.
Yeah Im ok so far on it. Im in UK under NHS so no idea of the actual cost. I mainly want to understand the different doses ie does the 100mg really work as well as the 125mg as thats what a lot of ladies on here have been told. If so, why is the 125 first line if a lower dose works just as well. Its just that kind of thing Id like to know for sure.
Well, I imagine since Pfizer recommends the 125 mgs. of Ibrance, that is how oncos prescribe it. Since the 125 mgs. does work for many women for a longer length of time, why would they start somebody at the lowest dose. I assume that the lower doses were made for women who could not handle the higher dose, but if not there are then options to decrease it, rather than take a patient off it completely. I am also assuming that most women would want the highest dose first. If a new patient is given it at the lower dose , I am sure the question is why am I not be given the recommended dose. This is still a fairly new drug. I am sure they are not even aware of how this will play out in the long run.
Does it work for a longer length of time? If it does then yes, a good enough reason. The point in question though is does 100mg work just as well as 125mg as thats what a lot of ladies on here say it does. You maybe have a point about them not being exactly sure as it is a fairly new drug so perhaps only time will tell.
When I was first put on Ibrance (three cycles I lasted), a CVS Pfizer nurse would call me once a month to see how I was doing, what kind of side effects I have been getting, would make suggestions (but always telling me to check with my onco first.) I had been told that for the first year a woman was on Ibrance, Pfizer "would track" a patient. New drugs even when approved by FDA sometimes have unexpected side effects the longer you are on it, so this is what Pfizer does...is track a patient so that they can better understand what is working and what is not. My new pharmacy now that I am on Verzenio never even picks up the phone.
So there is a noticeable positive difference in how I’m feeling since making the switch! There are still side effects but tolerable now! I am on 100mg Ibrance (vs the 125) AND instead of exemestane I’m getting faslodex shots. I’m also getting monthly Xgeva shots. Prior to the switch the flu like fatigue, hair loss, thin nails, muscle aches and such, it was almost unbearable and really affecting me. I started having lots of anxiety, which I hadn’t had since cancer treatment nine years ago. Making these switches has helped my day to day in a big way! I hope it’s all continuing to work to keep me stable or better yet NED!!
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Switching to verzenio - progression to liver 
Anyone go on Verzenio after Ibrance stopped working?
