For those of you on Ibrance.

[Nocillo]

Hello all, For those of you on Ibrance, how long has it/did it work for you? Was it your first line of treatment, second, third? Do you have lobular or ductal cancer? Thanks!

[sonycamera]

Hi all: This is my 3rd breast cancer diagnosis - 1st in 1990, lumpectomy with chemo and radiation. 2nd in 2018 - cancer in both breasts, bilateral mastectomy. 3rd last month - close to lymph nodes and up against the chest wall. This one is lobular. My understanding is there is 50-60% it's metastatic. Oncologist said Letrozole and Ibrance which I begin Tuesday 9/21/21. Dr said no one with this type of cancer choose not to use this regiment. Anyone else decide to go this route with the 50-60% metastatic chance. If so please share details: ie length of time on side effects, any recurrence etc etc? Thanks😀. Kathy

[mariootsi in reply to sonycamera]

I hope your treatment works a long time for you!

[Teddielottie]

I was diagnosed stage 4 bc ( ductal) / bone mets , de novo , late 2017 and Ibrance was my first line of treatment (125 mg ) from December 2017 and it has worked well for me ( so far !🤞) . I hope it does for you too . x

[mariootsi]

I have been on Ibrance and faslodex shots since June 2018. So far so good. Hard to determine how long it will work. Everyone is different but it is a very effective drug. My cancer is ductal.I wish you success for a long time on that combo.

Love and hugs,

Marianne

[Red1246]

Hope you have many more years on Ibrance or other. ❤️🙏🏻

[Hidden in reply to Red1246]

I second that. Many more years Sandra

[Hazelgreen]

Good questions, Nocillo! It seems to me that this site could be a very useful source of treatment information as nothing "works" for everyone. We don't even know when we're putting up with side effects unnecessarily. Perhaps, many of those who do well on Ibrance would have done equally well on letrozole by itself, etc.

It might be good if everyone started every treatment comment with basic facts about their disease - type, when first metastasized, which line, etc. Perhaps, we could develop a code...

[8576 in reply to Hazelgreen]

Starting with basic info is ok. However, there are way to many variables for each person to try to keep track of how a medicine works. I personally like this forum the way it is with tremendous support and help with problems and side effects and of course suggestions on ways to live and eat well.

Cheers, June S.

[Contrarielle]

Good luck with your treatment. After 3 years my exemestane (aromatase inhibitor) stopped keeping my cancer in check so for past three months I have been on Faslodex injections and ibrance tablets. There was almost immediate improvement in my tumour markers and although I get very itchy scalp and a bit of a sore throat in the second half of cycle I am very pleased and grateful to have access to these medications. Hope what ever you decide that you feel happy and stay well.

[Red1246 in reply to Contrarielle]

That’s great news! I think Ibrance is accurately touted as a “miracle drug”. So glad you’ve had marked improvement already and hope it continues. 🙏🏻 Kathleen

[sonycamera]

I had been on tomaxefin for 2 years after double mastectomy. It did not hold off recurrence so I have been on letrazole for 1 month with no side effect. Begin Ibrance in two days. How do docs know when letrozole and ibrance no longer works. Another recourance?

[Contrarielle in reply to sonycamera]

Hi, yes, as long as you stay healthy with no new disease developing you can stay on them. You might have regular blood tests to check your tumour markers (as well as to ensure no bad effects from medication,) and if you had signs of recurrence your doctor could order a scan.

[AvidBooklover]

In haste, Ibrance and Faslodex since late March or early April 2019. Started on 125 of Ibrance and dropped to 100 as I had multiple mouth sores. Feel lucky that it still is working!

[Cecelina911 in reply to AvidBooklover]

I had mouth sores too, and my doctor told me to start taking the supplement folic acid. Now I only get an occasional mouth sore.

[blms in reply to Cecelina911]

l lysine works better, I believe

[Merma]

Hi Nocillo,On Ibrance and anastrazole for almost 4 yrs as a maintenance med. I had endometrial cancer with 2 recurrences. Now considered in remission. Was on 125 mg for 3 yrs, but the blood counts didn’t recover in one week, so for the last year I’ve been on 100 mg. Dr. Thinks I could be on this regimen for 10 years.

Side effects not terrible, just weird.

Best wishes to you.

[Red1246 in reply to Merma]

That’s terrific that you’re considered in remission. Hope, if you have to be on meds, this “cocktail” continues to work. All best! Kathleen

[Valisa]

Hi Nocillo,I was diagnosed de novo in Dec 2018 and started Ibrance and letrozole that same month. Started with 125 mg but I am now on 75 mg due to low neutrophils.

My breast cancer is Er/Pr + and HER2-

Not sure if it is lobular or ductal this was on my biopsy report:

This could represent a high grade invasive

ductal carcinoma with E-cadherin loss, or a pleomorphic invasive lobular

carcinoma.

I hope to get many more months on this drug as it has worked well and I have had minimal side effects. I try to enjoy each day and not look too far ahead. I recently had increased bone activity but am staying on this plan until next scan in about 2-3 months. Hoping for more stable results.🙏🏻🤞🏻

Wishing you all the best and hope Ibrance is good for you as well.

[love2golfwell]

I was originally diagnosed with invasive lobular cancer in February of 2013. In October of 2020 I was diagnosed with metastatic disease to my ischium and started on Ibrance 125 mg and letrozole in November 2020 plus had some radiation treatments to the original lesion and then a secondary one. Last scan the end of June showed no new disease. I have minimal side effects (mostly hair thinning) and hope to be on this regimen for a long time.

[Red1246 in reply to love2golfwell]

I hope too you’re on that regime for a very long time! 🙏🏻 Kathleen

[Debbigbang]

Good morning 😁I am on ibrance and letrozole. Just into my 3rd cycle. These guys are my first treatment on this cancer travel. I was diagnosed March 30-21 invasive ductal carcinoma. Was supposed to be chemo radiation boom done. Darm cancer moved to small bone and liver. So far my bones are healing, liver is being stubborn. I am addressing that as well.

[Sister3nkc]

Hi, I have been on Ibrance 125mg/Letrozole uninterrupted since March 2015, 79 months/cycles! Unfortunately my last scan showed new mets to my right lung and lumbar spine. Meeting with the oncologist on Monday to discuss next step,

I was diagnosed with infiltrating ductal carcinoma left breast May 2000. Axillary node negative. I was ER+and HER-. In February 2015 it returned to my left lung.

[Contrarielle in reply to Sister3nkc]

Good luck! Hope there's another good step and that you have an equally prolonged response!

[sonycamera in reply to Sister3nkc]

Wishing you news from oncologist today that is promising and controllable 😀

[Tam-56]

I have been on Ibrance 125/Letrozole targeted therapy since the WTF DX in January 2018. It had spread to armpit lymph nodes and hilar lymph node. Yearly mammogram failed to diagnose ducal carcinoma as I have dense breasts. I actually went to doctor because of swelling under left armpit. It took them 4 months to diagnose…multiple sonograms and mammograms. I finally was able to feel the lump. I went out of state for treatment! I began treatment in May 2018. I have done well as scans are clear and blood work normal so far. I have thin frizzy hair (my hair has always been fine and not very thick) that is my main complaint with meds but feel lucky.

[sonycamera in reply to Tam-56]

Thanks for encouraging news about ibrance125/letrozole combo's lack of major side effects. May your treatment continue bringing you great health.

[PJBinMI]

My cancer journey began with de novo diagnosis of invasive metastatic (bones) lobular bc in March 2004, the month of my 58th birthday and the month I now refer to as my month from Hell! LOL E + P+ her2neu-. Became P - somewhere along the line, I don't remember exactly when. The current targeted drugs were not around when I was first diagnosed. I had a lumpectomy and was put on Letrozole and Zometa (Z is an IV bone med). I got almost five years from Letrozole. Faslodex was next, and when I started on it, the standard dose was half what it is now, one shot rather than two. I don't remember when the second shot started being given to me. I got over 9 years from Faslodex. In 2016 ibrance was added to the Faslodex, but after just a few cycles, it did permanent damage to my lungs, something called Interstitial Lung Disease, so now I get out of breath easily and have a rough time when it is humid outside. (Thankful for AC!) I now have a pulmonologist and use two puffers everyday. When I had progression, still bone mets only, I was put on Exemestane and have been on it almost four years. Zometa was switched for Xgeva several years ago, too, but again I don't remember exactly when.

About a year ago, a CT showed a blockage in my left ureter (tube from kidney to bladder) and I was referred to a urologist who removed the tissue blocking urine from "Normal" travel to the bladder, and lobular cancer cells were found in it. Not a big deal in terms of it impact on my body , but first time in something other than breast and bones! Now, last month a very small clump of cancer cells in the right inferior cerebellum were found by brain MRI ordered when I reported difficulty with balance and fine motor coordination. (like typing! tears here!) I saw a wonderful radiation onc who did one session of stereotactic radiation a week and a half ago. Still too soon to know how my symptoms will be affected. My strength is lessened too--I have a hard time using scissors, a combo of strength and coordination. I'm going to take those scissors to my next appt, so I can show this to the doc! I may ask about occupational therapy! IF this doesn't resolve itself.

So I've managed to live a long time with this lousy MBC and until the last few months my only "symptom" was fatigue. I'm grateful for the time I've had and still hope for more. My doctor's do not seem to think I'm nearing the end, but the last year has been alot different for me than the first 16 1/2 years living with this cancer. And more of us are living longer than when I was first diagnosed! I hope you will do well for many years!

[Red1246 in reply to PJBinMI]

So great to read this. May you continue to do well and for another 16 1/2! All best, Kathleen

[sonycamera in reply to PJBinMI]

quite a journey you have been on. Do your best to keep your attitude positive (know this can be challenging at times). Thanks for sharing your story

[Nocillo in reply to PJBinMI]

Thank you for so much information. On my last scans I think I recall something about the ureter tube. Just saw a new onc last week and he said lobular tends to affect the digestive system which no one has ever told me before, even though mine turned up in my stomach last winter. It’s reassuring to hear other’s experiences!

[PJBinMI in reply to Nocillo]

Most bc is ductal, with the lumps of cancer cells we usually think of. Lobular forms one cell thick/deep strands and can be sneaky and hard to detect some of the time. My impression has been that it is more likely than ductal to show up in tissue that lines organs. It has never shown on any of my mammograms. It's also usually E+ and her2 -.

[BaileyJames]

Hello, I have metastatic breast cancer. Was diagnosed in January 2021 I have been taking Ibrance 125 mg and anastrozole since February. It was in left shoulder bone and Breast. Had 10 rounds of radiation on my shoulder in March..

My tumor in my breast has shrunk by an inch. Yea me!

My last scan showed no signs of spreading..Praise Jesus..My next scan will be Mid October..God Bless to all..🙏🙏🙏🙏🙏

[Red1246 in reply to BaileyJames]

That’s great news! Gotta love those “stable” scan results! Take care, Kathleen

[PJBinMI in reply to BaileyJames]

I had a bone met (one of many) in my left shoulder blade, ,too, and it was a great place for my first bone biopsy--close to the surface and easy to access. That was in March of 2004 and I'm still here!

[sonycamera in reply to PJBinMI]

YEA

[michelangelina]

Hello, I have been on Ibrance and letrozole since May 2018, and this is my first line of treatment. It has worked well for me, although they did have to reduce my Ibrance dosage to 100mg because my white blood cell count go too low. My diagnosis is ductal carcinoma.

[Red1246 in reply to michelangelina]

I too was reduced to 100mg after cycle 3. So glad to be able to tolerate it as all scans since my dx have been “stable”. I think Letrozole and Ibrance work well together and hope we’re on them for a long time! All best, Kathleen

[hurricaneheather]

initial dx, IDC, Oct 2011. mets dx to right pleura and pleural effusion, July 2015. still on first line of treatment, which began in Aug 2015. i have chosen to remain on Ibrance, even though surpassed the PFD "timeline."

[Missmaddie615]

Sadly I was only on Ibrance for one year, was hoping for a longer run. It was my first line of treatment for MBC. I was diagnosed with mets in some lymph nodes, sternum and liver. It is ductal.

[Contrarielle in reply to Missmaddie615]

Hope you get a good result from next treatment Miss Maddie

[rubyc1234]

I was on Xeloda for a year and a half to stabilize my cancer and then I was put on Ibrance and Letrozole in Dec 2019. So far it has worked well with minimal side effects and I hope to be on it for a long time.

[Fiercefighter13]

Hi there, I was diagnosed with bone metz in July of 2019 (after being initially diagnosed with stage 1 -0 in 2012 and had a double mastectomy and took Tamoxfen for 7 years). I had an immediate oopherectomy after metz diagnosis since I wasn't post menopausal. I started Ibrance 125, Letrozole and Xgeva in October of 2019. Then was lowered to Ibrance 100 due to a severe infection that landed me in the hospital. My markers started going up about a year ago, but PET scans have been NED. Now my markers took big jumps two months ago, and this last Friday. Last Scan was four months ago. My doctor ordered a new PET stat, and I'm waiting to hear from scheduling. This has been my first line of treatment for metz. I had lobular carcinoma, which from the reading I have done, is a different beast than ductal. Maybe my research is faulty, but it seems that lobular is harder to treat and likes to spread more. My next line of treatment will be to switch Letrozole to Fulvestrant. I'm not looking forward to the shots.......

[Nocillo in reply to Fiercefighter13]

Thank you for your response. The shots aren’t great, but considering the alternative they’re tolerable. I’m with a new oncologist who described to me my two types, ductal and lobular and now I’m much more concerned about the lobular. It has moved to my stomach, but so far doing well on Ibrance and Tomoxifen. Good luck to you.