I've been on it 9 years now, 125mg. Anyone on it that long?
Ibrance?: I've been on it 9 years now... - SHARE Metastatic ...
Ibrance?
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Batiksforme
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That’s awesome! I’m 4 1/2 years on 100 mg and hoping it keeps working many more years. Can’t wait to read responses!
Wow that's great.
I'm 3.5 years on 125mg dose.
How extensive are your original mets? If you don't mind me asking....I've got bone mets from my skull to my pelvis ...mottled throughout these areas.
Have so far remained stable with the primary now undetectable on scans.
I have been told that the older we get the slower cancer grows...but I was diagnosed de novo at 50yrs old ( almost 4 years ago now)....so fairly young.
I've heard that some people have reduced their dosage after long stretches of stability....but that's usually to reduce side effects and to improve blood counts.
Hope you continue to do well on your medications
Best wishes
Zoe
I was 64 when I was diagnosed. I have about 10 tumors all stable. Mostly lung, spine. 3 years in they going gallbladder cancer. Pretty blessed. Some joint pain but other than that I’m good. I’m hoping to reduce my dose.
Thanks for responding about your tumor info. I know everyones different and reacts differently...but cant help trying to draw parallels....I'm hoping to stay on ibrance for as long as possible without progression.
I remember reading posts here that have been about medical research showing reduced doses to be as effective as full...if you try a search you might find them....sorry I can't remember who posted them.Good luck with all your treatments.
Zoe
xx
Thank you, you too.
So happy to hear of someone with ling mets getting this long on ibrance. Thanks so much for sharing 🙌
Congratulations - that’s so encouraging. Out of curiosity/nosiness, would you have made different decisions other than treatment ones had you known just how successful the treatment would be and if so what?
Ibrance was just ending a trial and my 2 nd opinion docs said to take it. My dr said his other patients didn’t do well. I insisted and I’m still here. I’m so glad. It was a rough start but I’m doing really well.
So pleased for you.
Omg you have given me so much hope! I’m just coming up to a year on may 23rd on 100mg and my tumours are stable! Of course I worry how long that will last! But you are amazing! I’m in the UK and have been paying for private treatment, but it’s going up to £1700 a month which is becoming ridiculous to afford! And I keep thinking of all the holidays I could have with that! But NHS does worry me so much! Keep up that amazing work Batiksforme xxx
I'm in the UK and all my treatment from NHS including this. Don't know how it would work to swap from private though.
Thanks for your reply wendle3007 I’m seeing my oncologist on 24th to tell her I’m going NHS so hopefully she will refer me! Just hope I don’t have to wait long so there’s a gap in medication! Do you find the NHS are good for cancer of course it’s different in all areas I’m in Kent xx
I can't complain about my treatment at all. They reacted very quickly to my diagnosis. I know the oncologist has to apply for funding for the Ibrance as it's so expensive so you should ask about this and maybe see if you can buy some to tide you over. My Ibrance comes from the hospital (after monthly blood test) and letrozole via my GP on repeat prescription. Good luck wit the transfer x
Thankyou that’s good news! Yes I will mention it to my oncologist! Good luck with your treatment journey as well xx
Hi
I’m in Kent too. I take 100g Ibrance, letrozole and 3 monthly Denusomab - no problems at all with NHS. In fact talked to my oncologist today saying how lucky I feel. All scans included 3 monthly. Have been on these drugs since August 21. No further spread.
Aww brilliant news I’m feeling more confident now! Thankyou for replying xxx
I'm at Nottingham, a top cancer teaching hospital partnership. The treatment is excellent. Scans, results, contact very quick and on time. I wouldn't want to go private with the top rate care I am getting here, but this is my experience with Nottingham NHS. Other hospitals can vary so I've heard. They even drop my meds off and the specialist nurses and emergency ward are very supportive and on the button x
Wow that sounds amazing! I only went private because it all seemed to be taking too long at the beginning, with the tests etc! But all my tests were still done on NHS I had to wait 6 weeks for the biopsy to see whether it was still breast cancer before they would consider treatment! And as you can imagine it felt like months rather than weeks! I am stable now and I know I can get Ibrance on NHS so not reason to keep using the life savings on private! Xxx
I can't imagine why it took so long to get bck to you! My 1st biopsy report was lung cancer because of my breathing and x-ray but then they found it under my arm. I never actually had it in my breasts, CT and PET scans showed it had metastasized.
I’m sorry you have to pay. I pay a little. It’s so expensive. I’m glad I have good insurance. Best of luck.
Mine is through insurance but because I’ve had breast cancer twice before they charged such a lot to insure me! I’m glad you have a good insurance company, and Thankyou for replying xx
hi , I am in the UK and I don’t pay for my Ibrance or Letrozole , I get it through the NHS, I am in my 4th year , you should try and get it without having to pay for it
Thankyou I will discuss this with my oncologist on 24th and hope the move over goes smoothly xx
That’s good. I am sure you will have no problem changing over , you have spent enough money on meds. ❤️
That's wonderful, you must have been one of the first when it was licensed. I've been on for 3.5 years although my dose was reduced to 100 after 2 cycles.
I started right at the end of the trial. I hope it works for you a long time.
I’ve been on Ibrance 31/2 years, in UK and treatment on nhs. Last year I dropped from 125 to 100 mg due to side effects tiredness, muscle stiffness,joint pain. They mentioned dropping to 75 mg soon due to build up of side effects again. Can’t stand for long or walk very far. Has this happened to anyone else and do you think 75 will be as effective at keeping the cancer stable? Was De Novo breast cancer, a small spot on spine and in lymph nodes in chest cavity
I have the same side effects. Every body is different. Get scans often. There are other drugs if this isn’t the one for you. Hang in there!
Thankyou x
Joint pain is a symptom of the hormone treatment rather than the Ibrance. With regards to dosage, I've been told that the right dose is what your body tolerates. If your blood tests are repeatedly low it means there's too much drug left over after it has attacked the cancer. Therefore reducing the dose means it will still attack the cancer but not deplete your good cells.
Ah that’s great, thanks for replying, now I understand x
Me too.
I also have the same side effects 100mg ibrance and Letrozole! My joints are terrible and ache all the time xx
Thankyou for replying, In the nicest possible way, I’m glad it’s not just me! xx
I started at 125mg and by the 3rd cycle, I was down to 75mg because I was skipping 2 and even 3 weeks due to very low WBC. I have been stable for 2.5 years. Side effects have been quite tolerable so far.
I am in Canada and have been on ibrance for almost 5 years, Have had the dose reduced to 100 mg about a year ago, due to low blood counts. I have no real side effects other than fatigue. There is now a generic form of palbociclib that is about half the cost, My provincial drug plan pays for mine as my private insurance wouldn't , My oncologist says there is no difference in effectiveness . I also was diagnosed denovo with one spot on my spine, I had shrinkage at first and am now stable, Best of luck to you
It sounds like you’re doing well. It’s a journey. My oncologist said cancer is all about putting out fires. Best of luck.
thank-you and good luck to you as well.
Thankyou x
I assume that you have your cancer antigens assessed every four months or so. If they remain in the normal range, that may well mean, given your age, you no longer need to take anti-cancer meds. If I were you, I would certainly try reducing the dosage, or, at least reducing the number of days I took meds each month.
I've often discussed my experience with breast cancer meds in this space so I won't repeat myself yet again. I'm now 79 years old, taking 400 mg ribociclib on week days only. I've had extensive breast cancer for at least six years.
Great advice. I see my oncologist this week. I’m going to make that suggestion.
Thankyou x
Hi Hazelgreen! I never heard if your antigens are in the normal range you don't need to take anti-cancer drugs anymore. That would be amazing news. BUT are the drugs keeping the antigens normal?
It's a good question, Boris, that one could only answer by checking CA measures regularly. I think you could always go back to the regular dose if your CAs start to rise again. My main concern is that anti-cancer drugs are harder on normal cells than normal aging. At my age (79), I don't need the added stress.
In my experience, it took about a year for 600 mg ribociclib to reduce my CAs to the normal range. My CAs did not increase when I finally reduced the ribociclib to 400mg on a weekdays only (this means that I never take a week off) schedule (400 mg X 5 =2000 mg per week). I may now try to reduce the ribociclib further to see if my CAs stay in the normal range.
Thanks! I feel so terrific OFF the drugs and so YUK on them!
I’ve been on ibrance 8 years, reduced once to 100.
Excellent! That’s good to hear. I felt very alone until I found this site My Drs have never had a patient live this long.
wow! Good for you, I can only hope it continues working for me. It will be 2 years in July which is Ibrance's average time of being effective.. Your post gives me hope!
You can do it! Listen to your body and don't listen to the studies. I heard that too - 7 years ago.
I’m in my 5th year of Ibrance and 3 of those including scans last week, I’ve been NED ( no evidence of disease). My Onc said from the beginning that I could get as long as 8 yrs from Ibrance as first line treatment so I’m happy to be well on the way! I hope you get much more time as well. There is hope! At my visit last week my Onc mentioned that in the time I’ve been NED 3 more drugs have come online so I left feeling good that there will be many choices should there be progression.
YES! The longer we live the more answers there will be,
I had no idea you could live so long with Ibrance. I am so happy for you and others who have passed that two year threshold.
I have been on 75mg for almost 6 years. It took almost 6 months to figure out the dosage I could handle and how often I could take it.
3 years on 75 mg. 3 weeks on and 2 weeks off
I've never heard of getting two weeks off. I sure wish I could do that. My blood is so weak
Yes they want to push me to high dose and I told them I want 75 mg and 2 weeks off and it works fine. I have been like that for 3 years. They didn't want to do it but o was getting headaches and not feeling well
Are you in the US? I am also on 75 going on 2 years. Metastatic to bones only. Aggressive cancer. I asked my doctor about the study that anastroloze can be taken every other day. She wasn’t supportive of that. I'm still having pretty bad fatigue and recently took a week break from ibrance due to a cold. My husband recently had a brain infection and is recovering but I am beyond exhausted caring for him and working. Looking for any work arounds to feel better. Your dosage makes more sense to me. It's so hard to find a doctor period let alone one that is willing to listen and think outside the "guidelines ". I know there some on here that have altered their dosage and just don't tell their dr.
Yes i am in USA. They said not bc it has never done like that. But I read here 3 years ago that a lady was doing like that bc her white cells counts was very low.
Good to know there are other options. All of my blood is not what it should be and it is so tiring. I'm glad this is working for you. So tired of the drs who won't listen to alternatives
You need to put you feet down with them. I did it and I told him if it doesn't work I will do what you ask me to do. It did work my way so I have been in this schedule for 3 years. He want me to take the 125 mg but I said no too. I want to start lower dose to see if it works.
Good for you. I've had to advocate for myself a lot. They want to do the same thing for everyone but we're all different.
2 weeks off? A lower dose too. I'm so glad it's working for you.
Yes. They put me 125 mg and i was getting very sick so they want to try 100 mg and i said why we have to start to the highest? They could not explained me why. So I told them i will do 75 mg but if 75 don't control the growth then u can increase the dose . 75 mg is doing just fine. I hate when they want to give us the highest without try lowest dose. The truth is this meds cause cancer too so why they want to put unnecessary high dose.
Good question. Maybe they’re trying to hit it hard at 1st.
I only try 2 months the 125
5 1/2 years. Last 18 months at 75mg. Three weeks o and one week off. Letrozole 2.5mg daily.
Get very tired week off. Leg pains too but those are Letrozole.
Yes, sometimes it’s hard to sleep. You get a week off if Letrozole? Good idea.
Ibrance 100 since April 2019 so almost six years! Was on 125 for a while but Mouth sores had me lower the dosage!
Wow! Good for you. Best of luck.
Ibrance was approved 9 years ago. I took it 7 years (from 2017 to 2024). I was sad when it stopped working for me.
That’s when I started taking it too. What are you on now?
I had progression to the liver. Tried Verzenio for 3 months but more progression. Now on Truqap since January. Hoping it keeps things stable.
Sending hugs and prayers. I hope this is your answer. I looked up your drug. It's been out since 23. I haven't heard of it. It's so good to have options.
Hug and prayers to you too. Where in the US are you? I’m in Sacramento CA.
Olympia Wa
I’m going on 8 years this April. 100 mg. PET scan end of March hoping it’s still working!
Had a double mastectomy January 2024, with 6 weeks of radiation. Hoping everything is good!!
Good for you. I didn’t have surgery or radiation. You just had surgery? Best of luck on your scan.
I'm now 48 and I've had MBC for ten years. I've been on Ibrance for the past 5.5 years. I'm now on 75 mg, 14 days on and 14 days off. I have no evidence of active disease, visit the hospital quarterly, and scan annually. The doctor is considering having me scan every 18 months.
I saw you were considering taking a break. Why don't you ask for a dose reduction? You'll have much more energy and feel better.
Yes, I’m thinking that will be my next thing. It sounds like you’re doing well. My scans are every 6 months. I have one next week.
8 years for me. I am doing well on 125 mg Ibrance and letrozole since April 2017.
Yay! I’ve seen a number of people on here with a lot of years behind them. It’s so good to see.
I go to MDA every 6 months for scans. I also see my local oncologist every month for labs. My MDA Dr. told me I could stop Zometa infusions and take calcium after 5 years on Zometa. That makes me very happy.
Hopefully that's because doctors are realizing the devastating long term effects of bisphosphonates.
I refused the zometa infusions my first 2 years. Then I switched doctors and they told me the benefits so I took the infusions every 3 months for 5 years. My MDAnderson Dr. said I could go off the Zometa infusions so I am relieved. i take calcium supplements 2 times/day.
I have a friend that has been on lots of different treatments during her 10 years with MBC. Zometa caused her bones to become fragile like “chalk”. She recently fell and broke her femur. They told her it was caused from the zometa monthly infusions.
I was on Zometa infusion every 6 months for about 2 years now my oncologist has switched me to Prolia injection every 6 months.
no I started in 2019, but I was wondering how you are doing? I went off for a couple of months, twice because I had surgeries (hip replacement’s). I think my biggest side effect from ibrance is anxiety and depression.
What do you think?
I was wondering about the anxiety and depression. I think I have a little of that. I did have a hip replacement about 5 years ago. No problems. I'll see how my bone density test comes out this week. I've never had one before! I think my 1st Dr thought I was going to die so he didn't order the tests I should have had.
Almost 4.5 years on Ibrance 125mg. De novo MBC, bone-only... and I have been NEAD for more than a year now. So nice to see someone who has been on it as long as you. Hoping to follow in your footsteps!
Glad to hear someone else has been on it for a long stretch. I have been on it (125 mg) for almost eight years. No changes, even though I have had to switch oncologists. I take it along with anastrazole and an every three months Zometa infusion.
I'm on my 3rd oncologist. I stopped Letrozole because of joint pain. Now I'm on Exemestane 25mg. It's pretty much the same thing with the same side effects. I do Prolia injections every 6 mo.
drug
Weird blank photo. Ignore.
That is so incredible! I have been on a little over 4 and hoping for many more as the side effects are very few for me. I recently had a new lesion that they assumed was cancer and I had it radiated but my doctor wants to keep me on the Ibrance and see what my next scan shows. I hope you are able to continue on this for a very long time! Sending hugs and prayers.
Thank you so much. Sending prayers to you. You can do this!
Wow, so encouraging! I have been on it for over 5 years and I am living a pretty normal life. Until recently I had to watch what I ate or I had diarrhea. However, that has stopped so things are going really well. I have heard of women who were told by their oncologists that it might stop working in 2 years. I think for many this is not accurate. I know of many of us who have been on Ibrance for quite some time. Of course, everybody is different.
I saw that too. It was even in the TV commercials.
I started on Ibrance (75 mg), Letrozole and Xgeva in September 2016, so nearly nine years. My PET scans are twice a year and show no evidence of active cancer. No surgery, radiation or chemotherapy—just two pills a day. My oncologist said that it is likely that I had this for many years before it was diagnosed because I have lobular.
I haven't had surgery or radiation either. I hadn't heard of Lobar. I looked it up. I was at stage 4 and probably had it 3 years before that. It wan't found on my mamograms. Only when I got so sick and couldn't breathe that they figured it out.
thank you, that made my day!
I have been on Ibrance/letrozole since May 2018, so coming up on 7 years. I started at 125mg and then went down to 100mg due to low neutrophils.
I did that too. My dr switched me to Exemestane. 125. I still have the side effects though.
I've been on Ibrance since January of 2018, which makes that 7 years. I had mets in my spine, hip and brain. I'm thankful that this is still the first line of defense. I've had minimal reactions to the side effects, or maybe I have become used to them. I pray that Ibrance gives me many more years. My best to you as I hope that you will continue to have great success with it as well.
I started on it Jan 2016, so have also been on Ibrance for 9 years, although on 100mg dose. Pretty stable tumor markers, although they rise and fall with other inflammation or illness in my body.
Someone else at 9 years! My dr said “you’re living with cancer”. I think we’ll be fine. The longer we go, the less of a chance of reoccurrence
5 years for me.
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