Stopping ibrance?

[caw2630]

I have been on Ibrance and Faslodex for 18 months, NED for almost a year. Onc is leaving up to me as to keep on taking Ibrance or just the faslodex. Appears that he thinks Faslodex should be kept up, but he said there are no tests that show Ibrance has increased longevity, Has anyone else done this? If so, please share results.

[Tap321]

My oncologist would say you are doing well brcause of the ibrance. I have been Ned for three years and would not stop ibrance.

[Southside25]

If you look at the Ibrance website, it states that Ibrance with letrozole (which I think is similar to Faslodex) delays advancement of the disease better than letrozole alone. I assume that is based on actual statistics, not just guessing or advertising hype. My onc. says one stays on Ibrance forever, until it stops working, I guess. I'm not sure I would go off the Ibrance. Is there some reason why you would want to stop? Cost? Side effects? I would try to talk to another onc. or maybe a pharmacist who specializes in cancer meds to get more information before making a decision.

[Survivornow]

Report I read on Ibrance said that once the body becomes immune to it, stopping it for 7 weeks, then starting it back up gives the body a chance to reset itself and the Ibrance starts to work again.

[Jewelyn in reply to Survivornow]

Are you kidding me. That is ridiculous. Rest itself?? No such thing. You don’t need a break unless white counts get low they’ll hold a week and give you neuprogen shot to build count up. Don’t take a break it’s saving your life. You will take for life unless it stops working then you will be put on something else. I’m alive and currently in remission after 11 years on Ibrance, fosladex and Zometa.

[Nursewithcancer]

Hi

Im not sure why you would stop unless your not tolerating it. The studies showed that ibrance plus hormone blocker letrazole improved disease progression. Faslodex is also a hormone blocker. Ideally one should stay on ibrance as long as it is tolerated or the cancer starts to grow. Unless you have had progression or are not tolerating it , I would totally get a second opinion. Ideally it is recommended to stay in course with each treatment option as long as possible. I can’t understand why you would stop ibrance if you are tolerating it and it’s working.

[kduck]

I have been ned for over a year. My onc stopped ibrance, I just do falsodex and xgeve. I think everyone is different and no same treatments are the same. I know several women who does just falsodex for years. If you trust your inc nothing should matter. My onc told me that I could come back to ibrance only if needed but he believes that hormonal treatment is the best for me. I feel good but I do still have aches and pains but it's manageable. I still take scans every 3 months. Researchers say falsodex alone could lasts years before progression.

[Jewelyn in reply to kduck]

Your doctor is not your friend. Get opinions as many as needed put info together and make an informed decision

[kduck]

Are you bone only? I am bone only so many of us bone only do extremely well with falsodex only.

[caw2630 in reply to kduck]

Yes. Was in femur and eventually broke

[Evaf]

Hi,

Congratulations on your NED! This post gives me so much hope! It is great that your onc is even considering stopping Ibrance, as I thought they would keep us on it forever (or until it stopped). If I managed to get NED I personally would consider stopping it (and going back to it if I needed to). I would still do as much I could in terms of diet, exercise, etc. and perhaps repurposed drugs to try to keep it at bay.

All the best with your decision.

Eva 💕

[SeattleMom]

Hello!

Not sure that your oncologist is correct in his assertion that Ibrance has not been proven to show increased longevity. Why else would it have been approved by FDA?

The interesting study would be patients (like yourself) with NED who opt out for a length of time and, if the cancer returns, will the Ibrance remain as effective if patient commences the same treatment. In your shoes, that would be my only fear: that stopping the Ibrance could trigger a recurrence.

God bless you and help you with your decision! XO Linda

[caw2630 in reply to SeattleMom]

Thought the same thing. Originally told it would be as long as it worked. He says no tests have been done as to taking it forever as opposed to restarting if needed. Reason for that is drug companies want to sell. He is leaving decision to us and at this point I feel like I may try without it. I am 67 and will get faslodex injections every 4 weeks still and bone scan every 6 months. Originally when this came back it was in my femur that finally broke.

[SeattleMom in reply to caw2630]

I think that sounds like a reasonable decision. My MBC showed up in spine and a pelvic bone. I was first treated with 10 rounds of radiation to spine, followed by Ibrance/Letrozole combo.

My current oncologist felt I was probably being “over treated” but has maintained this regimen since November 2017.

I just turned 70 and have found that Ibrance has really zapped my energy level. I think I’ll bring up this topic to her at next appointment. Bless you! 🙏🏻❤️

[oilermama]

caw2630,

The study that my onc gave me to read reported that Ibrance and an AI showed an "extension of no further metatasis to 24.8 months as opposed to just an AI at 14.8 months. I will ask her this week about the start and stop part of it. Best wishes as you pursue health.

Oilermama

[Jewelyn in reply to oilermama]

You would settle for 12 months vs 24??? Cancer meds cause side effects do I like them? No but I’m dealing with it. Please don’t stop meds or at least get second or even third opinions

[Magsue]

My personal goal is to get off the drugs and live my life. So many sucesss stories of woman managing the disease in a less toxic way. Diet, Mind body etc. good news is that if the drug is working when you leave it - why won’t it work if you have to return? We all have to follow our hearts. I’m 54 and not planning to leave this earth anytime soon. Praying for NED and the day I can get my body to do its thing!! 🙏

[Hokie]

Hi, I have been off ibrance for 14 months. At first it was for a 3 month rest, then I got another 3 months, and now I’m over a year. My scan done in December were good, NED.getting my markers checked every 6 weeks. Still taking letrozole. I’ll admit as excited as I was for the opportunity to stop ibrance for a while, it was like yanking away my security blanket. My Mets was to many bone sites and I feel like every new ache I get is, “ oh no the cancer is back” but I go month to month enjoying every day. This is a decision that is different for every person fighting this disease. I hope this information helps. As always check with your onc and decide what is best for you.

[Red71 in reply to Hokie]

Your story is good news. Ibrance made me NED in 6 months with numerous bone mets. But it does cause a lot of exhaustion. I would love to go off of it if possible at some point in time.

[Hokie in reply to Red71]

Hi red71, I’m glad to hear your NED. It took me almost 3 years on ibrance slowly reducing the dosage from 125 to 100, then finally 75 for about a year. It took quite a while before I was NED. I’m having scans next month to make sure things are staying that way. But I’m determined to enjoy every day I can and hope for the best. Best wishes to you

[Red71 in reply to Hokie]

I’m glad you got there! All our journeys are different but we all aim for the same place! I’m glad you are trying to enjoy every day possible. That’s my goal also. I can even enjoy housework....no I take that back, nothing can make vacuuming enjoyable!

[BelieveInMiracles06 in reply to Hokie]

I am currently on ibrance and Letrozole treatment and get an Exgeva injection monthly. My CA 27.29 marker has just dropped significantly which of course thrills me!!! The last reading was 25.1~ Im searching information about what to do about my ibrance. I would love to stop it mainly due to my hair thinning but don’t want to jeopardize my overall health. Can you update me as to what you have done the last 4 years in terms of treatment?

[lizamarienc]

My Oncologist has me on both but is considering taking me off the Ibrance for a period of time in the fall-- but continuing the faslodex. As he says, he can always put me back on if needed. Good luck!

[Dove2019]

I would look into further reports as to continue or not the ibrance. I believe through prayer and seeking guidance...the Holy Spirit will definitely lead you in the right decision and direction for you. Praise God! You are NED! I thank Jesus daily for every stripe He took for our healing...every single one of those stripes were and are for every sickness and disease. I am thankful by faith...just as we receive our salvation...we receive our healing by faith. May we all live LONG AND STRONG! May medical science find a CURE SOON! You will have a peace in your heart, when your final decision is made. May you laugh much! It too is GREAT MEDICINE! Oxygen in our bodies. Take care!

[Godbeforme in reply to Dove2019]

amen! I believe "by His stripes we ARE healed"! I am in agreement with you that we ARE healed in Jesus mighty name, amen again! <3 Holy Spirit shows what and what not to do, I believe that as well, He is leading me through this. <3

Isaiah 53:5

But He was wounded for our transgressions, He was bruised for our iniquities: the chastisement of our peace was upon Him; and with His stripes we are healed.

[Survivornow]

The latest research says that if Ibrance stops working, stop it fir 7 weeks, then start back on it. Apparently our bodies reset themselves and it starts to work again. I know the article is here somewhere. Discuss it with your Oncologist.

[Survivornow]

Once my Oncologist tells me I am NED, Ibrance stops for me. I'm not sure about my inhibitor- I've had to stop it because of my RA. At 63, I'll be happy with 5 more healthy years. Just can't see continuing dealing with all the side effects of the meds once I'm all clear.

[Humanist65]

My fatigue is over the moon any helps ?