Longest time on Ibrance?: I’ve been on... - SHARE Metastatic ...

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Longest time on Ibrance?

I’ve been on Ibrance with good results for a year. I know the DFP with Ibrance is reported as an average of 20 months. I’ve had trouble figuring out if that report has changed as the pool of Ibrance users expands and they have more people from which to adjust data. Is anyone here on Ibrance for 3, 4 or 5 years?

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I would be interested to find out as well because I’ve just reached 1 year on Ibrance and Faslodex. I hope to be on this combo for a long time, God willing.

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Me too...I’ve been on Ibrance for just over a year and coping ok and hate the thought of changing to another treatment in case I get horrid side effects

I think Nancy has been on it some time as I recall

Barb XX

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Yes she is away right now but I think it’s 4-5 years she is on it♥️

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It only came out on the market in 2015 for doctors to prescribe. Unless she was part of the clinical trials she could not be on it longer than that. But on another forum board, there were women on it for three years.

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I have been on ibrance (125mg) and letrozole for 20 cycles with good results so far and minimal side effects. I have a ct scan due in a few weeks time and I too wonder what the average efficacy of the drug is now . There appears to be a mix of people on this site reporting having to switch drugs around this time , whilst others have had 3 years plus. 🤞

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Nobody can give you a definitive answer. But I did read that if women are on it for at least a year, they are more than likely to have it work longer. I know women from other boards boards that are on it for 3 years, some of then longer as they were also part of the clinical trials. Ibrance did not work for me not because of progression but because how sick I got on my week off. It was surreal and awful. Now on Verzenio and after two adjusted dose changes (since the higher doses were too hard and I stopped), I am on two pills a day of 50 mg. with no week off. Ibrance scared me how sick I got on my week off and how hard the chemo fatigue hit me. Now I am happy with Verzenio (no weeks off) and I do not have the fatigue I had with Ibrance and more importantly, the fear of the week off. Meanwhile others on the forum board were like me, with their week off being the worse, while some women felt no difference when they were on or off the drug. Everybody has different health issues and such. So be thankful it worked that long...that is a good sign.

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I've been on Ibrance 100 for just under 3.5 years. I began with letrozole and was switched to Faslodex in Dec. '18 due to "activity". Side effects were much less on letrozole. Since Faslodex, I have more pain, fatigue has much increased. Some days I sleep 13 hours! But that does make me feel better. All Mets are to bone...spine, sternum, ribs. I wish I didn't have to give up my job...surgical asst...because it would have kept me moving more. Lymphedema made handling sharp instruments too dicey. Like many of us here, I have pretty good days and some not so good. I'm 67 and weakened but I still direct a small church school program, sing in choir and with a community chorus. I travel several times a year to stay with my daughter and family. I even have a grandson and two grand steppies...a joy that I never expected! Best wishes to all!

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So glad to hear about your long run with Ibrance and Faslodex.

Enjoy those grand babies. That certainly must be a joy!

My daughter and her husband don't want any children. They are both 39!

I am devastated. I always wanted to be a grandma!

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Grandchildren bring on a whole new level of joy and concern! My daughter is 39. Baby is one y.o. Daughter had no interest, then she did. It was quite a shock to see the scan.

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Oh! Maybe there is hope! God I pray my daughter changes her mind!

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Hi Martha. I'm on my 14th month now and like many of us have that negative note in the back of my mind that the noted PFS time is approaching. I did however see a new followup study to the original PALOMA-2 study with the data and followup now being reviewed after 38 months (versus 23 months) which puts median PFS now at 27.6 months.

abstract:

ncbi.nlm.nih.gov/pubmed/306...

full article

ncbi.nlm.nih.gov/pmc/articl...

Sandra

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Thanks as always Sandra. Your turn of the phrase is spot on.

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I'm curious too as I have been on Ibrance and Faslodex for a year also. Although we have to keep in mind that each of us is a very individual case!

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So true. No point in reading the reports and such and comparing to others, because everybody is different. I know women on it for over three years and still working full-time. It did not work for me (only three cycles) but not because of progression but because it killed me on my week off. I was in bed that whole week. Now on Verzenio which I prefer so much more than the Ibrance. So my system could not handle the Ibrance. The verzenio I take two times a day with no days off and I can handle this drug so much better.

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How did you feel in it? I’ve come off after my second attempt on it ( first was three cycles, second was two) I felt like a crazy woman- head was a mess and exhausted and felt like I was watching life through glass. Was gutted it made

Me feel this way x

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I assume you are asking about the Verzenio. I found Ibrance hard. the first two weeks were okay, but then my third week, I would get hit hard by the fatigue and my week off was a week in bed. I hated it. I got so sick on my week off. With Verzenio, my onco started me at 150 mg. dose 2x a day. I was expecting severe diarrhea from what I read but I was severely constipated from it the first week and then the second week and then the third week the diarrhea started. That was awful. I was afraid to leave the house as I would get no notice. I felt lousy on it and was crying alot. I stopped taking it myself. So I had week left and I said no more. My onco then lowered the dosage to 100 mg. 2x per day. I felt no better. As a matter of fact than I started getting stomach pain that really hurt. And again the constipation and then the diarrhea. I could not get a hold on that. I was constantly depressed about how lousy I felt with the stomach pain. She told me to take Imodium once the diarrhea started but when i did that, then I was constipated for a few days. I felt no better and stopped it on my own. I said its ridiculous for me to be taking something that is making me feel so lousy. Now, its been three weeks of the lowest dosage 50 mg. 2x per day and this was the trick. I no longer have to take naps, I don't get that extreme fatigue, the diarrhea is much more manageable and no more stomach pains. I feel normal on it. Being put on 50 mg. 2x a day is working fine for me. I see here again on the 24th and this time I will be happy to tell her that the lowest dose is working fine for me.

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A rare moment with internet and a bit of free time. Went to Island of Iona, an important site of early Celtic Christianity. Some people feel there is a mystical power there. I continue on my trip thru Scotland. Anyway, I have been on Ibrance four years. I did have to switch from letrozole to faslodex for minor progression, so who knows what’s really working and how well, but no doubt will have scans soon to see. The thing about median efficacy is Ibrance is/was relatively new when those numbers came out. I read if someone on it 6+ years. There are no definitive numbers, which makes this a real challenge.

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Just continue to enjoy the time on it and don't spend time worrying about when it will stop working otherwise you are losing time enjoying life. Four years is great.

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You are right, of course. That is my work in progress.

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I’m on my 41st cycle of letrozole and Ibrance 125mg. My onc feels I should get at least 4 years from this regiment. I’ve had no progression in that time, I have widespread bone Mets, have next scans in August. I feel so blessed that it has worked so well for me! I pray that everyone has this result.

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Great to hear that you have been on letrozole / Ibrance for 41 months and hopefully many many more ! Good luck for August ! x

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What are bone mets? I keep seeing this phrase over and over!

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Bone mets is an abbreviated way of referring to bone metastases.

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Thank you! That’s what I thought, but I never want to assume. Hope you are feeling well today.

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You're welcome! I'm not feeling too bad, thanks. I was a bit achy today, which is unusual for me. How are you?

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I have a double whammy I’m dealing with. I have metastatic BC in the liver and I’m doing well. My markers are very low and normal, tumors in the liver are shrinking which is all good. We lost our only son last fall to suicide and Sunday’s are particularly difficult for me. So I am a mixed bag today and I feel lifted just by you asking. Blessings on you 🙏🏻

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You do have a lot to cope with on top of your cancer diagnosis. I am sorry to hear that. I hope that today was better for you than other Sundays and that you were able to derive some joy from your day. x

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Wow that's fantastic! Your post is an inspiration to us all. Wishing you wonderful stable results in August. Take care.

Sandra

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Good positive vibes for a good August scan.

So happy to hear you have had 4 years!

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4.5 years for me; Ibrance and Faslodex, I started the first week it became available here in the US. I have ups and downs with the fatigue, but generally have done well. All mets are to my bones. I've been stable all this time with no progression. Hope to stay on Ibrance as long as possible. Thanks to everyone who responded to my question about Claritin, Aspirin, and Curcumin. I really appreciate the good info I get here.

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I only had a year on Ibrance b4 my mets spread , but my friend has been on it for 3 years and her bone mets is remaining stable

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I’ve been on Ibrance for 30 months with no progression. Some areas have resolved and the rest are stable. All Mets are in my bones. So I’ll take what I can get.

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It’s great to see all the replies. What I noticed is that the ones who have been on Ibrance/Letrozole or Ibrance/Faslodex longest have bone mets only. I guess those with visceral disease (me included) can expect a shorter PFS on Ibrance😢. I just got my tumor marker results a few hours ago and my CA15-3 went up by 10 points and my CEA by 2 points. I will have another tumor marker test next month to see if there is an upward trend followed by a scan if there is an increase in the markers.

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Don't assume you will have a shorter time. I know women who have mets to liver, spine and are still on it three years later. Tumor markers...I have no idea what mine are. My onco said tumor markers show no indication and of anything and they tend to fluctuate. I was on a forum board (the first one I joined and then left) bc these women were keeping excel charts, and obsessing over tumor markers and every little thing and always assumed it was the cancer. Sometimes a headache is just a headache. I told my onco all I need to know is its working or its not and then move on. I am not going to give cancer more time than is necessary. I do not keep folders, and my onco in the beginning gave me copies of my blood work and such and I said I don't need this. All I will do is toss in the garbage. On this board I was on they were complaining about the pink ribbon vs. the metastatic ribbon and how unfair it is that there are not enough of them. That is when I left the board. I thought Geez, if this is their biggest worry, then this is not for me. For some women it may make them feel better but for many it seemed when they overthought a situation or read something a non-medical person posted, they would get all upset. They actually kicked a lady off the board bc all she talked about was that she was going to die soon (and she had been a member of that board for two years.)

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Thanks Kearnan. I appreciate your reply and it was just what I needed to get me out of my self pity this morning.

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We all have self-pity days. So indulge ONCE IN A WHILE. I have my bad days also and cry, etc., but then the next day I am back on track. Sometimes we need a good cry to cleanse our soul. Just don't let it overtake you. When I feel sorry for myself, I remind myself I still have all my senses, hearing, seeing, being able to walk, etc. There are many more horrible diseases out there that affect one's ability to do basic things and then I think about the very young children who get forms of cancer and lose out on their childhood. Or, the teenage children who should be enjoying their teens but are in and out of hospitals. And then I realize I am not that bad and that many many others have it so much worse.

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Thanks. I’m in a happy place again😄

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Hello! I have been on Ibrance/Letrozole for 24 cycles 125 mg. The past 3 cycles my neutrophils have been low so my start date with my cycles were pushed back. This past month my count was down to 400 so my doctor is reducing my prescription of Ibrance to 100mg. I’m hoping this will help with my blood count and help me stay on the meds for another 2+ more years!

I’m so happy to see some of you on Ibrance for 40 and more cycles!

Thanks! Theresa

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Probably. My doctor participated in that.

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My doctor says he has patients on it for 6 years.

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They must have been part of the clinical trials because I thought it was released and approved by FDA in 2015.

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Hello everyone. I have been on Ibrance (100mg) and Letrozole for 27 cycles now since my MBC diagnosis in March 2017. Just had bone scan on Monday and report shows stable. Getting a CT today and see onc on Friday. All my Mets are in the bones as well. I am hoping this drug regiment will keep working for many more years. Good luck to all...we can do this!

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I wish you well on Friday. Continued success.

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CT scan also showed everything is stable and my onc agreed to keep me on the Ibrance/Letrozole regiment. Got my monthly Xgeva injection yesterday as well. Really tired, went to bed early last night, and hips and jaw are sore today but if that’s the worst of the side effects, I will take it!

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Yayyyyyy. Stable is good! Celebrate! Happy to hear your good news!

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I know somebody who has been on it for 36 months (with falsodex injections). Remember Ibrance is a "new" drug. It came out in the market after clinical trials in 2015. On some forum boards, there were women that were on it longer since they were part of the clinical trials with Ibrance.

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They did a study and found that staying OFF ibrance for 42 days made it start to work again, for those it had stopped working for. This is what I hope my onc allows me to do should it stop working because it would be nice to have a break from it anyway, right? I will know more in a month when I get my tests done to see where I'm at. I feel good taking it 5 days on and off 2, my neutophils have never dropped below 1,500 (I have only completed 2 cycles) and I have no week where I crash and get sick. Whether it is effective or not is still unknown but lots of other women have had good success with this schedule, as a matter of fact, if I'm not mistaken, I learned about it on here. They do have an ongoing trial of this schedule and it completes this year, with study results released in 2020. I am just just putting my experience out there, not trying to get anyone to change their prescribed dosing strategy. God bless you and heal us all in Jesus name, amen!

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Amen!

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I always wonder who the "they" are that do these studies LOL. Ibrance was rough for me and I stopped after three cycles. I hated that drug. Now on Verzenio and after two dose changes, now on 50 mg. twice per day with no weeks off and it is such a big difference. Yes, there are some issues with diarrhea but you get used to managing it. I do not have the fatigue I had on Ibrance or the stress of my upcoming week off. So if the Ibrance eventually does not stop, there are other drug. I was off Ibrance for almost five straights months (only getting the shots). The Ibrance lowered destroyed my immune system so badly that an infection in my leg (which in the past was easily cleared up with antibiotics) make it unable to go away. They took me off the Ibrance, five week of antibiotics and the infection in my upper groin area was painful. They had to do surgery and cut tunnels in my leg and the recovery which was expected to be a month turned out to be five months because the holes (and they were holes) in my leg were not closing up. So all I was doing was the injections and then when when I had all the scan work before resuming medication, I had no progression at all. And that was five months off any type of drug.

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I took the letyrozole first and after 3 months had 2 places no longer visible and 3 smaller. I hesitated taking the ibrance because I have many lung nodules and was afraid of fluid on the lungs. I had a cough a few weeks ago, but it went away and now feeling fine. Thanks for sharing and I had asked about verzenio from the get-go as I wanted the newest, bestest thing available but dr. suggested I start with ibrance. Thanks for reminding me about verzenio! God bless you and heal us all in Jesus name, amen!

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Hi - I've been on Ibrance and Letrezole just over three years. Am on my 42nd cycle. I haven't seen many updates to the studies in terms of progression free but I do know several women who have been on it much longer than 2 years. My mets were on my liver (extensive) and I've been stable for the entire time.

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original bc dx Oct 2011. mets bc to the right pleura dx July 2015.

treatment plan: Ibrance, Anastrozole, Lupron

have been on Ibrance since August 2015; approaching 4 years. started at 125mg, lowered to 100mg within a few months. then a few months later, lowered to 75 mg. NED/stable scans since Mar 2016.

integrative approach to health and well being, including travel to "healing areas."

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Wonderful! Continued success!

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