hello everyone I just wanted to see if there are any long timers out there who have done well on Ibrance and/or lupron letrozole/ how their experience has been.
long timers on Ibrance : hello everyone... - SHARE Metastatic ...
long timers on Ibrance
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Jenniferp2122
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I just started Ibrance with the Faslodex I had been taking. I'm interested in others experience...thanks for posting the question
yes! I am on my 87th cycle of Ibrance... which means that it's still doing well for me after 7 years. I also have had 89-90 treatments of Faslodex as part of my treatment.
I began on 125mg. of Ibrance. After 3 months of having to postpone the beginning of each cycle, I was dropped to 100mg... Just 2 month ago the doc dropped me down to 75mg, because I'd been NED for a year or so. I will have a Pet Scan before my next doc appt and 4th cycle to see if it's still as effective at that dosage.
My main side effects have been low blood counts, severe IBS, and fatigue.
7 years...you have given me a gift of hope.
That’s amazing! The longest run I’ve heard of yet! I took it for close to 3 years when first diagnosed with mets
how are you handling the Fadlodex injections for this long? After 6 tears I’m switching to Anastrozole and Ibrance to give backside a break…def worried bc it’s been working to keep me stable with no progression.
I have the lumpiest behind EVER from those terribly viscous shots! I'd like to try the Anastrozole, but if memory serves, I tried taking that once before and it caused even more joint pain than the Faslodex did.. so we decided not to go with that. The nurse feels around a while before she can find a good spot that's in between the lumps to insert the needle.
Do you make sure the nurse warms up the syringes, takes at LEAST 2 minutes for each injection, massage the injection sites before and after the shot, and apply heat for as much as you have time for after the fact? These are things that helped with the pain and/or discomfort every 28 days... sounds eerily like something else, huh?!
Best of luck... I'm interested... Let me know how it goes for you.
Hi,
I've been on Ibrance and anastrozole for over 5.5 years. Started at 125 mg until 3 years in, then switched to 100 mg when the blood counts didn't recover after the week off. I started on this regimen after my second endometrial cancer recurrence and post radiation, so I was in remission to begin with. I get PET/CT scanned every 6 months and my blood gets tested every other month.
Best wishes.
That’s a great run on iBrance too! I took it for nearly 3 years. I am curious about your endometrial cancers - did you get some particular symptoms first that led to tests and diagnosis? Or were you having specific scans that discovered the cancer? I always wonder how that type of cancer gets discovered.
Post menopausal bleeding and painful sex. That’s how it is mostly caught. First, found through a painful biopsy. Then, laparoscopic hysterectomy and radiation. It was stage 1B. Grade 3, ER+PR+. I think they figured out the her2- after the 2nd recurrence and then I was put on Ibrance. (Already on ai after first recurrence.)
Not mant endometrial cancer patients on this protocol, but my dr used to work in bc and was part of the clinical trials, so he convinced the rest of the team to go along. I think everyone is surprised that I’ve lasted this long on Ibrance. The Gyn onc even introduced me to a young Dr as a “miracle of modern medicine “!
I have been on IBRANCE , faslodex and xgeva since December of 2018. Started with IBRANCE 125 and he changed to 100 on June 2022 due to low white blood cells. I am getting blood test each month and getting xgeva shots every six months. So far my scans haven’t shown any progression 🙏. I have Mets to my bones (neck c4 c6). Good luck to everyone on this on this journey
Sima
Hi sima,
I was told I couldn’t be on Xgeva for too long. After 5 years, I was switched to Zometa.
Lynn
Ibrance/Faslodex/Xgeva since April 2019 so four years. Started on 125 of Ibrance...went down to 100 since I had mouth sores at 125. Minor ones a few times at the end of the three-week cycle since then.
Did dropiong dosage to 100 cure the mouth sores? I've just started iBrance (end of 1st cycle) and have developed very painful sores in my mouth.. wasn't sure if there is anything that could be done.
Yes...dropping to 100 helped. Occasional sore, but only if I am run down.
THX!
for what it's worth - the first mouth sores on my first month were the worst - none have been that bad except one time. I have not figured out why that one was bad. I've been on it a year
interesting - mouth sores are my worst side effect but my onc has never suggested lowering - I wonder if it's because i'm on a trial.
Worth asking! Also, ask for scripts for mouthwash.
i have all the mouthwashes 
I had four and a half happy years on Ibrance and Fulvestrant. I was on 75 mg--had previously been on a clinical trial for Ibrance and later realized I was on 125 mg, which was way too much for me. Alas, the stuff stopped working in August of 2022 and I've been flitting from chemo to capacetabine to Enhertu and now to something that seems as good as Ibrance as long as it is working: a combo of Exemestane and Everolimus.
I have been on ibrance/palbo and letrozole 4 years 9 months. 75 mg for last year and a half. Feeling good although neutrophils stagger to get up to 1.0.
Hi. I’ve been on Ibrance/faslodex since December 2019. I’m doing and by the grace of God it’s still working. I take 125 mg. Fatigue is what I deal with most.
I was on lbrance and letrozole for 5 years, no progression til the 5 year mark, now on faslodex and doing well. Many people do very well. Wish you the best. ❤️
That’s great! It’s wonderful to see so many taking this for so long with success. Did you ever take any other hormone-related drugs before you were diagnosed with mets? I ask because I had been on Letrozole for about 5/6 years, as a preventative after my first cancer but obviously it eventually failed because then I got diagnosed with the mets
I was encouraged to take aromatase but l couldnt tolerate the bone pain. So l didnt take any preventitive - at the time that was all that was offered.My oncotypetest was very low: 7
I really didnt expect to get recurrence.
Hello Jennifer, Ihave been on Ibrance for about 6/7 years now, along side Fulverstant injections (if speling wrong I am sorry) and Adcal
I have been on ibrance and letrozole for 4 years and zometa infusion every 3months.
I am on Ibrance now started taking 100 Mg but was on 125 Mg but white count very low so that is why we lowered it. Take Letrozole with it but stopped Xgeva shot as I needed a tooth pulled and Oral surgeon refused to do because of problem with the jaw which could happen. Have you experienced this? My main concern is hair loss. Its awful and having a hard time dealing with it!!!
I also had terrible thinning of my hair. About two years ago I buzzed it off and I wear a wig. I also had a very hard time with it happening and felt it made me look really sick. The wig looks so much better. Still wish I could have my own hair but doesn’t look like it is going to happen. Theresa
I've bought some really cute hats (a sock monkey, a fox, and other cute ones) that I feel good in, as well.
I have been on Ibrance 125/letrozole/zolodex injections since May 2019. NED since Jan 2020. I get scanned in Jan/July and blood tests every month. Fatigue is the worst.
my dad has scans in January and July too! Do your tumor markers ever fluctuate when you get blood work monthly? They can drive us all insane!
A little but its been a pattern of going up and down. I don't let it bother me too much as I was told that other things can effect them fluctuating.
I have been living with MBC for 8 years. I started Ibrance as my second line treatment and dropped down to 75 mg fairly early in the process by choice. (I was so fatigued and I'm a small person, i.e. BMI 17, and really found it too exhausting. The dose reduction was not seen favorably but I had found research in Asia validating efficacy for smaller women and thought this would be right for me... and it is). I completed my 51st cycle today/4 years next month and still going strong! My oncologist now wants to scan me annually 
Have been on Ibrance/Letrozole for over six years. Mostly 125 mg but finally dropped to 100 mg. Last December my oncologist dropped me to two weeks on and two weeks off. I have felt better. Will have scans the end of June to see how I am doing . Hopefully, I will be able to stay on the lower dose. My oncologist is at Moffitt Cancer Center in Tampa, FL. Hope this helps you. Blessings, Hannah.
You’ve had a fantastic run already but I’m curious why your doc switched you to 2 weeks on and 2 weeks off vs 5 days on and 2 days off. There are people in this group that have used the latter dosing with success both staying im without progression and blood counts managing better. I ask mostly because the drug is out of your system after 2/3 days so repeats of 2 weeks off seems a bit riskier. Do a Google search. Pfizer themselves have actually been studying the 5 on/2 off themselves
He wanted to drop me to 75 mg but I suggested two weeks on/two weeks off and he was happy with that. He is with Moffitt Cancer Center in Tampa, FL. Sees patients two days a week and does research three days a week. Guess anything outside of recommendation is a risk. Blessings, Hannah
I was on 75 mg nearly the whole 2 1/2 - 3 years I was on it due to my counts taking too long to rebound. My doc stuck to the 21 days on and then I would have nearly 2 weeks off. Now looking back, with newer info having come out, I seriously believe I would’ve had an even longer run if I had been offered 5 days on and 2 off instead.
It’s for people like me still struggling to rebound on the lower dose, that they started the research of 5/2 days continuous cycle. It has improved the regularity for folks like me and the time off is barely enough for it to ever completely leave your body which is ideal to fight the cancer
do you have the BRCA2 mutation by any chance?
Sent you a DM
Hello Jennifer, i have been on Ibrance for 4 years now. Original mets to Liver and clavicle all gone after 1 year and half of taking it. I will have my next scan July. Side effects mostly a bit of bone pain and fatigue. Very manageable though and i didnt need to take pain meds for it. God bless and heal you!
Hi Jennifer. I began my Ibrance/letrozole journey in February 2017 to treat bone mets. I was only on 125mg of Ibrance for a few months then switched to 100mg which I was on for over six years. In February of this year my dosage was lowered to 75 mg and I've had a few months when I had to wait two weeks between cycles due to low blood counts. I've read that some people struggle with accumulated toxicity from these drugs and that's probably what I'm dealing with. Besides the low neutrophils, I struggle with some fatigue. I changed to taking Ibrance at night so I could function during the afternoon. It seems to work, but some days are better than others.
Glad you posed this question. So inspiring to read about the length of time some have been on the Ibrance/Letrozole or another med with Ibrance. I have been on this combo since November 2020 and have done well so far. I have been on the maximum Ibrance dose but have not experienced really low neutrophils. My scans have been good. I go every 3 months for bloodwork and 6 months for a PET/CT scan. So far tumor marker has remained fairly low, just a bit above normal range, and scans have been NEAD. Hoping to stay on this protocol for many years to come! Best wishes to you. Hope you do well on this combo, too!
do you have the BRCA2 mutation by any chance?
Actually I learned that I have the CHEK 2 gene, not BRCA2. It is also a gene known for causing breast cancer as well as other cancers. Three of my siblings also have the gene. My youngest sister learned she has the same early breast cancer as I did when originally diagnosed and did a double mastectomy. My other sister had a preventative double mastectomy. My one brother had thyroid and prostrate cancer.
I got 3 1/2 years on ibrance. Liver lesions
mets to right pleura and pleural effusion dx July 2015. treatment: Ibrance, Letrozole, and quarterly Lupron injections Aug 2015. still on first line of treatment. Letrozole was changed to Anastrozole in 2015. Lupron was changed to Zoladex in 2020. on lowest dose of all meds. take Ibrance vacations. NEAD since March 2016. blood work and tumor markers quarterly. PET/CT scans are annually as of this year.
Now that’s what I call success! What determines when you take iBrance vacations? And how long do you take off?
thank you! Ibrance vacations are determined by how the mind-body is feeling. ie, a sinus infection, chest 'crud,' or external life events. it can be an additional "off week" or sometimes a full treatment cycle. fortunate, the onc is supportive of my request to take an Ibrance vacation.
ok so I could say I had a drug vacation nearly every cycle when on iBrance because I needed an extra week most months to recover my neutrophils enough! 😁
yes, you could! from what i understand, when a patient alters the prescribed usage, it could be considered an Ibrance vacation.
has your pleural effusion cleared up? I've been on Ibrance and Anstrazole (or a trial drug) for a year and have had great results to the bone mets but minimal reduction in the pleural effusion, and still coughing a ton. It's getting me down.
the pleural effusion was cleared in July 2015, due to a successful VATS talc pluerodesis, and bronchoscopy. i cough more than i did prior to the mets dx... pleural effusion? Ibrance? allergies? it makes the heart happy to read the great results with the bone mets.
yes I think the cough could be so many things, and where I live, allergies are the worst
Hi! I am on year five+ of Ibrance along with anastrazole. The dosage has always been 125 mg and I don't think I have had huge side effects. Or maybe I have, but I am too stubborn to notice. Fortunately, I have excellent insurance and am paying less than $100 per 21 day supply. Like many others, I have blood work done every 28 days and most times it doesn't seem to vary much.
Best of luck as you begin this adventure!
Hi! I have been on Ibrance/Letrozole for 5 years. I started at 125 mg and eventually changed to 100 mg due to low neutrophils. Although I do have some fatigue, I am able to work full time and do a number of other activities as well.
I’ve been on Ibrance for just over 5 years now. Started it at 125mg, with Letrazole and Denocumab /Xgeva shots. But after a few months Onc dropped me down not 100mg caused of low WBC count every month. Also after a few years had problems with my thumbs and hands, so now using Anastrozole instead of Letrazole. Hands much better.
I’m still going great. Will always have Mets and I know I’m palliative until I’m not!!!
But also had to have a tooth pulled two weeks ago. So I was not given that months Xgeva shot. Gum is slow to heal and I’m scared of that. But they have booked me in follow up appointments to keep a check on my gum. I think they’ll hold off on the shots until it’s healed properly.
Other than that, the hand, tiredness and some chronic met pain, I’m doing very well so far.
I feel such huge gratitude for the research and the time we live in.
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