Ibrance effectiveness: Curious to know... - SHARE Metastatic ...

SHARE Metastatic Breast Cancer

4,646 members5,519 posts

Ibrance effectiveness

JustmeMary profile image

Curious to know how long Ibrance has (or had) been effective for you.

108 Replies

4 years 8 months, scans next week. Always a little nerve racking.

Wow that’s awesome! Best of luck next week! 🙏🏻

girlsptz profile image
girlsptz in reply to Lakelifenh

Fantastic! Wishing you wonderful stable results with your scans next week. 🤞🤞🤞

Sandra

Wonderful! Keep going!

Valisa profile image
Valisa in reply to Lakelifenh

Wow! That is great, good luck with upcoming scans.

mariootsi profile image
mariootsi in reply to Lakelifenh

That's great. I wish you good scan results!

Yes, it is always stressful to face the results of the scans. But it is wonderful that you are doing so well for that length of time. Hugs Marlene

2.5 years & currently NED. Left pelvic bone met only. All the best to you!

❤️🙏❤️

Excellent! Same to you! 🙏🏻

Hi Mary. I have been on Ibrance 125 mg and Letrozole for 38 months.

Sandra

JustmeMary profile image
JustmeMary in reply to girlsptz

That’s great you are able to tolerate the highest dose this long! I’ve just been reduced to 75mg.

32 months

I am on my 9th month...just curious if any of you that have had all this time have Mets anywhere other than the bones?

JustmeMary profile image
JustmeMary in reply to Ardie1970

Mine is just bone so far.

1711JPD profile image
1711JPD in reply to Ardie1970

I am entering my 7th month of 125 Ibrance. Liver mets. Ibrance and Faslodex have stopped progression and have shrunk tumors.

I’m just bones with MBC X 12 months

It will be five years for me at the end of September. Mets to liver. No activity on Pet scans for four and a half years. My largest tumor was 11.5 cm. And I am on 75 mg. 😎

JustmeMary profile image
JustmeMary in reply to Kateds

Amazing! That gives me hope 😀

Kaydub profile image
Kaydub in reply to JustmeMary

Me too!

Valisa profile image
Valisa in reply to Kateds

Fantastic! So encouraging.

Gibby21 profile image
Gibby21 in reply to Kateds

This all gives me so much hope! I’ve been on 125 mg of Ibrance and faslodex for 3 months going for my first 3 month scans in a couple of weeks…..so nervous!! Mets to liver…. It’s been a lot to take in but you guys are giving me hope! Thank you!

viennagirl profile image
viennagirl in reply to Kateds

That is wonderful. It gives us all hope. I have been on Ibrance and Letrozole for just over two years and I have not had any progression. We must stay hopeful. Hugs Marlene

fine1 profile image
fine1 in reply to Kateds

Did that largest tumor shrinked totally.

Kateds profile image
Kateds in reply to fine1

It became much smaller, 3.5cm by 2.5. My onc also feels that it is just necrotic scar tissue.

fine1 profile image
fine1 in reply to Kateds

Thts good

fine1 profile image
fine1 in reply to Kateds

what does that means.necrotic scar tissue in medical term

Kateds profile image
Kateds in reply to fine1

Necrotic means dead, so dead cancer tissue.

Hi JustmeMary,

I've been in Ibrance 125 for six years and almost four months, although I did switch out the other side from Letrozole to Faslodex about three years ago. Bone only. Needless to say, I'm a fan... :)

Lynn

Valisa profile image
Valisa in reply to LynnFish

So encouraging to see this. Wishing you many more years.

JustmeMary profile image
JustmeMary in reply to LynnFish

Very encouraging!

viennagirl profile image
viennagirl in reply to LynnFish

Yes, you give us all hope. Hugs Marlene

Hello! I am nearing 3 years on 125mg Ibrance and Letrozole. Denovo, with a 3cm breast tumor, and mets to lungs, and several other places. I just completed scans in June again, and I continue with "no evidence of disease". Have never had surgery or radiation. Wishing you a long successful run with Ibrance! Have hope!!

Anitafazz profile image
Anitafazz in reply to Lookin-up

Hi very similar history to mine . My breast tumor was 3 cm . Can you still feel yours ? you ever thought on getting it removed ? I have been on Ibrance sine 1/20 .

Hi there I am just over 2 years with mets to bone and lung. Dose reduced to 100 mg a year ago.Wishing you lots of years on Ibrance

Clare

I’ve been on it since August of last year but there are people in my support group who have been on it 3 years+

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

I also take Andrographis which is supposed to help with overcoming resistance to drugs to treat ER+ breast cancer. The above link explains the research

I buy mine from Amazon brand Is Double Wood ~ I take two capsules a day which is 1,000 mg

LynnFish profile image
LynnFish in reply to BigHugs21

Wow, this is *so* interesting!!

I need to re-read after taking some ritalin (!), but I'm wondering if this is related to the statin on the COC protocol? I'm thinking I'll ask my doc before ordering the andrographis? They prescribed me half the normal dose of statin because they were concerned about me having too low a cholesterol level....might the andrographis compound the effect of the statin, I wonder?

Thanks for sharing!

BigHugs21 profile image
BigHugs21 in reply to LynnFish

I’m not sure exactly what the interaction is with statins/your cholesterol so you would be well advised to check it out for you

I do take the care oncology protocol which includes a statin the Oncologist at COC has my full list of all my supplements. They monitor all my blood results and I’ve had no issues to dye.

SeattleMom profile image
SeattleMom in reply to BigHugs21

Hi, BigHugs!Just curious as to whether your oncologist is on board with your adding the Andrographis supplement? God bless you!

Linda. 💗💗🙏🏻🙏🏻

BigHugs21 profile image
BigHugs21 in reply to SeattleMom

My NHS Oncologist doesn’t have the full list of everything I am doing ~ I am feeding ideas into them slowly as my positive progress continues.

My COC Oncologist knows everything I am doing, including dosages and why I take what o do. Now whilst he can’t comment on every aspect of the protocol I take he does flag if he is concerned about anything. It’s my COC Oncologist who is prescribing me my metformin, statin and membendazole via the COC protocol and help me monitor everything including blood results. I share everything with them.

My NHS Oncologist knows I take some supplements (not all the detail) , I’ve shared all the details of the COC protocol and rationale and last time at my appointment we had an extensive discussion on diet.

Hope that helps

SeattleMom profile image
SeattleMom in reply to BigHugs21

So this particular supplement they have not yet commented on?

BigHugs21 profile image
BigHugs21 in reply to SeattleMom

Not commented at all and I provide them every 3 months with an updated sheet of everything I am taking and send the blood results over to them every ~ 5 weeks

SeattleMom profile image
SeattleMom in reply to BigHugs21

So interesting! I’m going to check that out! 💗💗🙏🏻🙏🏻

MoUtOrWaNc profile image
MoUtOrWaNc in reply to BigHugs21

This is VERY interesting! I am going to check this out further and talk to my onc team about it. The article doesn’t mention any negative side effects that I could discern. Do you know of any downsides to taking it?

This is very interesting. I like a few others are on the CoC protocol and I will ask my CoC nurse if taking this conflicts with the Statin presribed on CoC. What I love about the CoC team is that they answer right away.

I know, so whilst it is a paid for service I think it really helps to have experts on hand and I’ve found them great at helping guide me

Agreed and BigHugs back at you !

Hi BigHugs ! Can you attach the link from Amazon. Big Hugs !! Julia Adele

Hi there! I was on it for 11 months. Just changed to Capecitabine. Best of luck to you!

] 10 months so far at 125mg. Bone mets only. No real side effects other than thinning hair and occasional fatigue. Scan in next month so hoping for continued "no progression".

JustmeMary profile image
JustmeMary in reply to Rubyjude

Sounds like we’re about the same timeframe and exact same side effects but I’m on 75 mg.

13 months 125mg, currently 8 months on 100mg. Best of luck to you

32 months for me, I am currently on 75 mg dose. My oncologist tried to up the dose back to 100 mg but I had to go back to the 75mg dose again after 6 months as neutrophils too low.

I have been on ibrance and letrozole for 28 months. Started on 125 in May and down to 75 by December and am still having trouble getting my blood up. But it has kept everything at bay. Theresa

AuntC profile image
AuntC in reply to Totheriver

I also have a problem with low white blood count even on 75 mg. Now for about 5 months I'm 2 weeks on & 2 weeks off and blood counts have stabled. Next scan isn't until October. Good luck on finding the right formula for you.

Carolyn

Totheriver profile image
Totheriver in reply to AuntC

I am starting 2 weeks on and 2 weeks off on my next cycle so hopefully that will work for me too. Theresa

I appreciate all your responses to my question - it’s so encouraging reading them all! ♥️

I’ve been on Ibrance 100 mg for over 5 years. Started as a combo with exemestane then letrozole and now faslodex. My oncologist says we’ll stick with ibrance as long as we have a combo that works. My counts can be pretty bad and fatigue is rough but it’s working!! I’ll take it!

LynnFish profile image
LynnFish in reply to caw517

Hi caw517,

Congratulations on your great success with Ibrance... :)

I have a question, if you don't mind...You've taken Ibrance in combo with *three* different treatments?

I think this is pretty unusual, but I'm a fan of the approach...My understanding is that when the initial combo fails, "they" tend to change both.

I was able to retain the Ibrance in combo w/ Faslo after alleged progression on Ibrance + Letrozole, but this was because my doctor coded the change as due to side-effects, not progression. My interpretation is that this is an insurance thing as much as a medical thing?

Would you mind sharing any info on how/why you've been able to keep the Ibrance in spite of two changes? (No pressure, I'm just trying to understand... :) ).

Best,

Lynn

caw517 profile image
caw517 in reply to LynnFish

Hi Lynne!!-

-I am happy to share my treatment circumstances. As I said, my Ibrance combo has changed 3 times. I am not aware of any insurance issues with doing this. Prior to being diagnosed MBC I had been on arimidex for 5 years due to a reoccurance. Then one year later came MBC. Because of this my onc started me on Ibrance and exemestane. When a PET showed progression after 3 plus years , he suggested the letrozole. He stated since Ibrance is the "main" drug and the others are "add ons", he wanted to try changing the combo. I was fine with that. but 3 months later there was still more progression on the PET. That started Faslodex with the same logic. Next PET showed a big drop in the mets so thats where we stay until progression is seen. PET is due in about 3 months. My onc has stated that when that occurs we might be changing up Ibrance as there are really no other combos to try. Hope this helps you. And as far as the insurance, I went on medicare during this Ibrance run-- supplemented by UHC thru JNJ , my husbands former employer. There have been no issues with insurance tho I have heard of women who once off Ibrance have had trouble getting back on again due to insurance. Lots of info but I hope it answers your questions/

Take gentle care--

Carol

LynnFish profile image
LynnFish in reply to caw517

Carole,

Thanks so much for the great info! One more potentially invasive question: Where to you get your treatment? I'm currently in the market for a secondary onc (my prior one @ Duke just retired) and would like to get one who is flexible with these matters....

Thanks again, be well..

Lynn

caw517 profile image
caw517 in reply to LynnFish

Hi again--

I receive treatment here in Indiana-- just a small city. Fortunately my oncologist has been with me from the very start-- 25 years and counting !! He will consult with drs from IU Health-- which has a big breast cancer research area. Other than that I can only say I am blessed with an onc who stays up on treatments and is willing to try new things.... wishing you can find someone similar near to you !!

Blessings

Carol

LynnFish profile image
LynnFish in reply to caw517

Thanks, Carol!

I *have* found someone similar, which I think is how I was able to remain on Ibrance with a second partner-drug?

She also works out of a "community hospital" (in Dallas) and at one point mentioned that this give her more latitude...Apparently the big research hospitals are more beholden to the standard approaches (although of course they have better access to sanctioned trials...). She's been my onc for 11 years (wow! re: 25 for you!) and I've maintained a secondary onc at big research facilities, i.e. MSK in NYC for a few years then Duke...

I'm happy for you....and for me! :)

Best,

Lynn

caw517 profile image
caw517 in reply to LynnFish

Lynne--

Hope you continue to do well. It is good to have an onc that keeps up with research but can also do what is best for us, their patient , and not be totally held back by what is considered protocol !

Wishing you the best.

Carol

29 months. Started at 125 and moved to 100 after about 4 months. Bone only in one hip spot. NED. Also on Faslodex and longing for oral treatment for that! And Xgeva every three months.

I was on it for 26 months , I had dosage reductions due to low neutrophils.

Hi there- I’ve been on Ibrance 75 with fulvestren for 7 months and my cancer is stable. Good luck to you!

I have been on Ibrance 4 and a half years and have Mets to my lungs. Blessings, Hannah

My wife was on Ibrance 75 and Letrozole for 3.5 years with bone mets. Had some progression late last summer/fall, so was switched to one of the Phase 2 clinical trials for Amcenestrant, a new oral SERD (kind of like oral faslodex--daily pills instead of monthly shots) from Sanofi. She has been on this course since last October and is doing quite well overall. I have reported on this a number of times, so will not get into detail here, but she is still doing quite well and the QOL/side effects are actually better than the I/L combo, at least in her case. Good luck to you, and all the others who are still on Ibrance! We are thankful for the time we had with Ibrance that bridged us to this trial, where she was among the first 100 or so humans to test this compound--now there are quite a number of trials underway, including Phase 2 and Phase 3 trials with a number of oral SERDs.

six years in Aug. started at 125mg, a few months later 100mg, then 75mg (for fIVe years). still on first line of treatment. stable/NEAD.

JustmeMary profile image
JustmeMary in reply to hctrojan

Encouraging!!

How long did it take to be NED? Is that the same as NEAD?

dx in July 2015. the body was NEAD in March 2016. NoEvidenceofActiveDisease; the onc prefers this term, as she thinks it to be more accurate.

Wow and it has stayed that way for all this time? What a joy!

Ibrance 11 months for me. Started 125, second month 100, then 75 mg for rest of time. Then Piqray for 10 days with horrible side effects, quit after having to go to the ER on day 10 with anaphylactic shock, now on Xeloda with hand and foot peeling side effect and can not be in the sun.

Just over one year in since stage 4 diagnosis and feeling very well. Just one blip when wbc dropped. Hoping I can keep it up !

Hi 🥰 I am on 35 months 👌

Did not work at all. Very aggressive cancer and nothing is even slowing it down.

I’m so sorry to hear that. Prayers 🙏🏻

Four and a half years since diagnosed with MBC in my bones. Started Ibrance at 125mg and immediately switched to 100mg. Ibrance and Letrozole working well for me so far. Stable and no progression. Just switched from monthly Xgeva injections to Zometa infusions every three months. Feels like being on vacation!!

I am on Xgeva once every 3 months… as I hate taking IVs… having the shot every 3 months is bliss

I was on Ibrance for almost 1 1/2 years. 125 mg too strong and then 100 mg also too strong (neutropenia), so was on 75 mg. After that I time progression showed and so went on IV paclitaxel which I had reactions to. More progression showing. Now on low dose 70mg. IV Vinorelbine, 2 weeks on and 1 week off. Things fairly stable at the moment.

Many lucky people below. I have noticed that people with just bone mets do better, but I see there are others with long term effectiveness with mets to other places.

I was told the average duration of effectiveness is 2 years. We thought I might get five years, like another patient in this practice, but no, just 26 months. I was on max dose with Fulvestrant injections. So disappointed. Have heard that the less time the first line of treatment works, the less time the next will work.

However, I am on an oral SERD in a clinical trial and it seems to be working very well. My hair is returning. Side effects are minimal. So....

16 months for me so far. Bone mets only. 125mg. I have some scans next week so fingers crossed for continued success. I feel pretty good too so hope it keeps working for a very long time! Very few side effects.

JustmeMary profile image
JustmeMary in reply to Andibo

Excellent!

I had mets to spine and one lymph node infected. Started on Ibrance 125/letrozole, and quarterly Xgeva injections in March 2018. Ibrance reduced to 100 then 75 for about 2 years. Spinal mets and lymph node clear, tumor drastically reduced in size and much reduced metabolic activity. Stable for a couple of years.

Hi, Mary! My Ibrance was paired with Letrozole and lasted 34 months before mild progression. I was then switched to Faslodex for 8 months before mild progression again. I’m now on Xeloda for past couple of months. It’s a journey. 🥴

God bless you!

Linda 💗💗🙏🏻🙏🏻

18 months and counting…..

43 months on Ibrance 125 mg /Letrozole , first line of treatment, no radiation or chemo and ‘stable ‘ for 3 years .Was diagnosed late 2017 with bone mets de novo . Tolerated side effects and feeling well . Hope I can stay on this combo for much longer , but would drop to 100 mg if neutrophyls dictate ! x 🤗

Fantastic!!

I've been on Ibrance (125 mg) + Letrozole (2.5 mg) for over six years with no progression. (I have diffuse mets in lungs only).

Nice! 👍🏼👍🏼

26 months 125mg +faslodex +xgeva. Bone only

I have been on Ibrance for 4 1/2 years. Started on 125 and now on 100.

Nice! 👍🏼👍🏼

Hello ! It was a good 18 months for me (mets lymph nodes, liver and now 1 on T4 vertebrae) On Xeloda now (since April 2021) seems to be working. I had a CT scan last Thursday, results tomorrow during appointment with my oncologist. Good luck with Ibrance !

Mary

I’ve been on Ibrance and Letrozole 3 years 2 months. No progression

JustmeMary profile image
JustmeMary in reply to Tam-56

Wonderful!

Diagnosed Denovo Mets to Lungs. and I was put on the following after A/C-T chemo. I’ve been on Ibrance 125mg + Letrozole for 2-1/2 years with no progression.

Diagnosed de novo in Jan 2019 with lobular bc and Mets to the peritoneal. I’ve been on Ibrance 75mg and Letrozole with no evidence of disease for 1 year. 🤞🏻

Hello! I was only on Ibrance for 19 days when my doctor requested I stop due to low white blood count. I have chosen not to resume based on my reactions when stopped. Do you have any Ibrance experience to share?

My experience has been low blood count since the beginning. My oncologist lowered me to 100 within the first couple cycles then just recently lowered me to 75mg. I’ve been on it for almost a year. So far so good - 👍🏼

Was on Ibrance for 12 months before progression. Mets to lungs. Had to go down to 75 for last 6 months I was on it. Best to all

6 years and 4 months on 125mg with letrozole!

Wow! 🤩

Actually a little longer than that. I started Ibrance just after the FDA fast track approval in February 2015!!!

3 years, 7 months 125 mg for 3 yrs, now 100 mg. Good scans every six months

Hi, up until yesterday 28 months. It kept bone and lung mets stable but unfortunately the liver now has shadows so I have to change meds. I am upset and dissapointed I have to change but for me, and not everyone, there is no choice.Best wishes

3 years and NED for awhile now....

You may also like...