Stop taking iBrance?

[mudakurag]

I just had an interesting meeting with my Onc. She asked me if I would consider going off ibranch because I have been stable ever since I started to take it five and a half years ago. I was shocked. I didn't know what to say other than I feel more secure staying on it. She said that there are clinical trials trying to test whether or not it's beneficial after so many years of being stable. Does anyone have any information about this or any experience in this area?.

[Merma]

My onc that prescribed it, said no after my gyn onc suggested it. I have been on Ibrance since 2017. Last spring, the 100 mg dose started messing with my blood counts, but he didn't lower the dose until Dec. I had many breaks in the Ibrance cycle. As a consequence, the cancer recurred twice! We expect that now that I am on the 75 mg dose, I'll be back to my regular schedule and will be able to stay on it for a while longer (hoping for a few years). If you go off of Ibrance, I would suggest aggressive monitoring.

[mudakurag in reply to Merma]

Thank you for the speedy reply.I am really scared to go off it.Dont think I will.

[Peggypilot]

i am estrogen positive and I refused Verzinio after my stage 4 diagnosis to bone 2 years ago. Just taking Letrozole and Xgeva. My onc was not pleased at first but later said that my decision was validated by several new studies.

My numbers went down and I have NEAD since. Who knows?

[Tantalon7211]

hi I am in a similar position as you- had one Mets to hip bone and had radiation last year - and went off Ibrance - can you tell me what the studies showed - I am 75

[SoulJourney]

hi - what a great problem to have in all the horrible problems we have to face.

I am not trying to diminish the problem at all and if I was in your shoes I would be terrified too! To be healthy enough to consider no treatment that is a wow to me.

Try a break, not a stop. When I was on Ibrance my numbers got sluggish but I was stable so I was given 2 months off. There are some reports that a break is good for efficacy. I haven’t read anything about stopping though. I don’t think I would want to do that either!

We used the break to travel. It was wonderful.

You sound like you are in a good place with your decision. That confidence will only help you.

Hugs and happy thoughts,

Tammie

[Hazelgreen]

It sounds like you have a well-informed oncologist who thinks about her individual patients, and reads research. I envy you.

I don't know your age, but, if you are post-menopausal or even older, it doesn't seem that risky to check on what your cells are doing by taking a break from Ibrance. (Body cells do not replicate as frequently as we age.)

You can always take Ibrance again if your bloodwork shows your CA (cancer antigens) rising. If your CA has been in the normal range for a long time (such as 5.5 years), this may simply mean that your cancer has been completely eliminated. A CT scan might confirm whether this is the case.

[NPmary]

Until there is convincing evidence to go off this med while you are stable - absolutely I would not stop taking it.

[mplevine]

Intersting,y this topic came up at my last clinic visit. I asked about a patient my onc told me about when I started on Ibrance. After 7 years NED she went off Ibrance too.

[AvidBooklover]

I have been on it almost 5 years and been NED for about 4.5. One hip met. Before breast cancer in 2012, I had melanoma in 2010...and through a PET/CT in 2019 when I was diagnosed with MBC they found spots on thyroid treated with surgery. So I worry as my body seems to spout cancer one spots and I fear going off it means I may play whack a mole with something new. But...who knows. I do tolerate Ibrance well.

[OceanBreeze3]

I was on Ibrance 75mg for almost 2 years with constant blood issues. My oncologist (Dana Farber) took me off and said after 2 years, you've gotten the most you are going to get from Ibrance. I've been off Ibrance for 3 years and I'm still NED after 4.5 years. Diagnosed May 2019, with met to right hip. On Letrozole only and sometimes I take 3 month breaks from that as well. My biggest complaint is the arthritis these medications have caused thru out my body.

[Dflur in reply to OceanBreeze3]

I didn’t know that the arthritis comes from the Med’s? I never read that…

[Dflur]

I’m so glad you wrote this… I just suggested this to my onc. I’ve been on ibrance since fall of 2019 with anastrozole. I did go off for about a month, during that time because I got a hip replacement. But I have had no new progression either, and we are spreading out the CT scans to every 6 months! Long story short, my doc wasn’t ready for this… I just always worry about being on something… what long term effects to my body?

[mudakurag in reply to Dflur]

It's so weird to think I may go off it,!Still not ready

[Lilywallytootsie]

My vote is to stay on Ibrance as long as it is working. I just got back from a six month check-up at Moffitt Cancer Center and I am still stable after almost seven years. My oncologist both locally and at Moffitt don't say NED, NEAD. I think they mean the cancer is gone. Mine is still there, but not active. I wish you the best with your decision. Blessings, Hannah

[mudakurag in reply to Lilywallytootsie]

Thank you

[Gingerann1 in reply to Lilywallytootsie]

NED is no evidence of disease and NEAD is no evidence of active disease. I have been NED for 2 years and it just means that nothing is showing on any scans. I know it is hiding in there somewhere waiting to rear its ugly head and I’ll have to change treatments but until there is a true cure none of us who are stage 4 are or will be cancer free. Best case scenario is NED or NEAD. Sounds like you are NEAD from your post so hoping you stay that way for a long time!

[Lilywallytootsie in reply to Gingerann1]

My scans show the cancer but it isn't growing. Blessings, Hannah

[Greatday2]

Wow, that is really good news. Can I ask what dose of Ibrance you are on? Did your onc recommend still taking your other meds (Letrozole?)?

[Lilywallytootsie in reply to Greatday2]

Started out at 125 and was reduced after 2 or 3 years to 100 and after another 3 or 4 years was reduced to 75. It's been about a year. My energy level has got lower and lower as the years go by but I am not complaining. Blessings, Hannah

[mudakurag in reply to Lilywallytootsie]

Thanks,HannahMy energy level has gotten very low,too.Ive been on 100 for just over 51/2 yrs.I'm stable but still have a large Plural Effusion in my left lung,that has never changed.It doesn't seem to have affected me.I don't have serious breathing problems.I rarely get mildly out of breath. I don't walk very fast,tho'.I seem to lose energy/stamina pretty quickly when I start walking.

When my onc suggested I might consider stopping ibrance or taking a vacation from Ibrance,she didn't mention the PE?

I Wonder if she was thinking about the PE at all. Many of the people I read about on this site have PE's that have cleared up completely after beginning medications like I brance??? So, since I still have a large PE, I wonder why she suggested stopping or vacationing from iBrance. ?

[Greatday2 in reply to mudakurag]

What dose are you currently taking? And did your onc suggest staying on your other meds (like Letrozole)?

[mudakurag in reply to Greatday2]

100.She said I would stay on Letrozole.

[KimberlyB40]

Hi Kim 43 hr positive her2 neg. My Mets went to almost every bone in my body 3/2021 and by September 2021 I was no evidence of active disease on ibrance 125 and letrozole. My Dr also asked me of I wanted to stop after 2 years and I was like uh no. But if I do make it to 5 years I said I'd consider it. They have this ctdna blood test from Signatera that can detect repccuence up to 10 months before a Petscan (I'm in the process of adding it to my monitoring) but if you do consider stopping I'd suggest adding that to your monitoring also Medicare JUST approved it to be covered so I had to push it to my Dr but its going to be pushed more soon by health care providers once more insurances cover it. Good luck to you!!

[hurricaneheather]

most recent scan was 29 January 2024. it was another NEAD. that is eight years in a row, with a nine year mBC dx. the onc and i discussed stopping Ibrance. i am stopping with confidence; i've taken 2-3 month 'breaks.' the blood will be monitored every four months and will include hormone and tumor markers. PET/CT scans will remain yearly.

[michelangelina]

I am very interested in this topic. I have been on Ibrance for almost 6 years, and no one has ever suggested that I could stop taking it. I don't know that I would be comfortable stopping--but I will definitely discuss this with my oncologist.

[Timtam56]

I went off Ibrance after 5 1/2 years. But my reason for going off was to start a trial. I was on 100 mg for the whole five years.. and when I came off, I came down hard. I think I had really full on withdrawal symptoms and I felt shocking. So that makes me wonder how incredible that drug is, and how much it actually keeps us alive.

I’m now on a trial of Alpelisib/Piqray. Feeling fantastic except for the dry mouth, yucky taste and some sores in my my mouth sometimes, but not too many.

I am wondering what is next, or if I even want to go for a “Next”.

[Mardy72]

If I was to get off Ibrance, I would start eating the foods I couldn't have while taking Ibrance. Like grapefruit, I would eat it every day and Pomegranate. The foods my oncologist told me not to eat. I'd continue to avoid. I've been on Ibrance for 4 yrs now, all my scans look good. My oncologist suggested that I may be getting off of it in 2 yrs.

[sevoia in reply to Mardy72]

I know not to eat grapefruit , but have not heard about Pomegranate. I went on the Pfizer site and all they say to avoid is grapefruit. How did you learn about Pomegranate. I am concerned because I mix a little pom juice in my water.

[awesome4ever in reply to sevoia]

Hi there. Most literature sites will tell you to avoid Pomegranate as well as Seville oranges along with the grapefruit when you take Ibrance. Here's a few links but it is generally mentioned on most sites....even Pfizer Canada , just not Pfizer.com.

pdf.hres.ca/dpd_pm/00045824...

breastcancer.org/treatment/...

[sevoia in reply to awesome4ever]

Thank you so much. I will not drink any more Pom juice

[Mardy72]

Do you know about this website?, foodforbreastcancer.com Oral cancer meds are not on here but estrogen blockers are. I'm taking Letrozole with 75 mg of Ibrance. You should check out the food lists for your blocker. I follow the food and supplements list for Letrozole.

This site is only for breast cancer and survivors.

Hope this can help you.