Ibrance (Palbociclib)
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Kelli, I'm in the fourth cycle of Ibrance. I take it daily for twenty one days and have seven days off. I also take letrozole. The only side effect I noticed on Ibrance was fatigue but since I started it the same week as my last chemo it might not have all been due to the Ibrance. The fatigue was pretty bad but I've noticed it is a little less now. I hope that trend continues! Also it's working, so far. My TM were cut almost in half from May bloodwork to June. I hope it works for a long time. (I have some other se's from the letrozole but nothing to make me stop it, so far.) Be sure to take it with food and at about the same time each day. I hope it works well for you and that you'll find it very tolerable.
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Kelli, today is my 7th day of Cycle 1, 125mg Ibrance and 2.5 Letrozole. Like you, I wanted to know what to expect but for me it was more like I needed to know atDay 1, 7, 14, 21, of the 1st cycle, its just how I'm wired - lol!), especially when side effects would occur. This board has been wonderful, the amount of support is amazing and the strength has been inspiring. I have learned so much from reading what others have experienced, hope this doesn't sound bad-not my intent, but it's nice to have a supportive group going thru the same thing, although I wouldn't wish this on anyone.
So far, after day 1, nothing, now at day 7 no side effects. I take Ibrance in the morning with a light breakfast, (breakfast before my metastasized diagnosis was non-existent, coffee was all I needed) and as soon as I get home from work, I take the Letrozole. I've read from others that the fatigue seems to kick in right around the 21 day mark. I also read from others, no side effects but blood work can delay treatment to allow WBC to get better. I bought ginger drops and peppermints to keep in my purse, car and office, just in case I feel nauseated. I will post at day 14, this is when my labs are scheduled.
Take care....
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Kelli, welcome. You'll find incredible support, experience, and knowledge here. Do read back through the posts; you'll learn so much for future reference.
NettaGer....WHOOPEE!
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Kelli, welcome! I am on cycle 38 and stable. My main side effects have been fatigue and muscle and joint pain. I still have all my hair. I’ve been on 100mg since my second cycle. I have not had any issues with low counts since my first cycle. I take my Ibrance and Letrazole together at dinner since it’s my most consistent meal of the day. You should always take it with food. My mets are bone only but are in almost every bone in my body. Last pet scan showed no abnormal uptake. Some days I feel pretty good and some days I am extremely tired, seems to be no rhyme or reason. Others on here have also mentioned that. The Letrazole makes me sweat profusely. Hope this isn’t TMI! Wishing you much success on this combo.0
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netta - Awesome!
njgirl13 - I am just waiting to start my 5th cycle of Ibrance which I commenced in February 2018. The main SEs have been increased fatigue which I seem to be slowly recovering from (more exercise), and random mini bouts of nausea, diarrhea and once in a while constipation. My main issue has been with the low neutrophils after each cycle which makes me more susceptible to infections(have not yet experienced any)... I have been taking Letrozole since last July and I think bone and joint pain are more SE from that not the Ibrance. Best of luck and do not get discouraged - after only 2 cycles my ct and bone contrast scans showed the bone met was slightly smaller! I go again mid-July...
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kelli- welcome😊 I know that when I first found out that I was stage 4 I thought that was it but then I found these wonderful women and they made me realize I can live with stage 4. I have been on ibrance 125 and faslodex since February. I do get joint pains for a week after my faslodex shot so I believe it is from that and not the ibrance. I have been able to control it with 2 ibuprofen a day but you have to watch how you take ibuprofen because your platlets need to be high enough.good luck 🍀 with treatment and I hope you do the ibrance dance for a long time.
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Hi, Kelli, welcome to our little corner of the world! I remember when I came for the first time and started to discover that there were people who had done well on Ibrance for a long time....It felt great. There Lynnwood is on cycle 38 making us all feel like we can do this forever! I'm 21 months into Ibrance/XGeva/Arimidex. I started at 100mg and switched to 75mg a while back (4 months? I forget!). After the first 3 cycles in 2016, my widespread bone mets showed a remarkable response and I'm probably NEAD for all practical purposes. I first was diagnosed with MBC in March of 2012 and here I am. alive and kickin'! You are going to do just fine, my friend. Don't fret too much about the side effects as none of them are anywhere close to what you've probably already been through with chemo. Whatever happens, you'll get lots of encouragement and suggestions from the lovely people here. We also have a bunch of brilliant scientists who keep us informed about what the researchers are up to. So, again, welcome to our Ibrance Dance and to the community of pioneers who are leading the way to a cure!
Love from PatG
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I could really use some advice / insight after another mixed response scan.
Just completed cycle 8 of Ibrance (with Letrozole) Previous scan 9 weeks ago showed two nodules in lungs are growing a few mm each month. Last scan 6mm is now 9mm, January it was 2mm. And 1.6cm nodule is now 1.8cm, 1.0cm in January. Every other nodule is gone or stable since January. So some is responding. These two pain nodules in either lung are not. Though they were initially after my first three cycles.
Anyone else having mixed response? Is this just a thing? Either way I'm considered oligo at this point which somehow is comforting to me despite a few grumbly spots.
But now what? MO would like to biopsy one of the nodules via bronchoscopy to see if those spots are triple negative or now weakly ER+. (Would be my third bronchoscopy in under a year. Not a fan and these spots are deep in the center of my lungs on either side) It's my choice but this would inform us as to what to do next... however I'm tempted to just wing it with treatment choice because it's fricking Summer and my one year mets anniversary is coming up (on my birthday) and PTSD from that is in full swing.
My options regardless of biopsy...
- Swap Letrozole for Fulvestrant and stick with Ibrance (though not covered through cancer agency in Canada as a second line. Wtf?) So I would have to pay 20% of cost and my extended benefits would cover the rest.
- Abandon Ibrance all together and try to get Lynparza (PARP-inhibitor) to target my PALB2 mutation. Again 20% of it I would have to pay out of pocket unless we can get compassionate access. Though right now it's only approved for BRCA1/2 not PALB2 in Canada. So I'm not even sure I can get it which is so frustrating.
- See if we can radiate the nodules (anyone has SBRT to lung mets?)
- Biopsy needed: Possibly access a trial for Fulvestrant + PiK3 but currently don't know my PiK3 status. (This would be so I could get Fulvestrant at no cost)
Abemaciclib is not an option for me as I'm not in the states. I asked about Afinitor but MO said she didn't think it would be a next go-to for me. Is there anything else that I'm missing as a next line option? I'm so disappointed that Ibrance Letrozole hasn't held everything at bay and it's only been a year since this stage IV crap started. The fact that drugs aren't covered also has me frustrated.
Should I attempt the biopsy to go in more informed or just wing it and try to get Fulvestrant covered so Ibrance can still be in play? The idea of another bronchoscopy just makes me so sick to my stomach.
Cure-ious: I read all of your posts with links to studies and trials and am grateful for you sharing findings. I've learned a lot here from everyone and I'm grateful for that. It helps to go into appointments more informed and be able to ask questions that I only know to ask because of this space.
Mica1: your post has been on my mind about being glad you didn't abandon Ibrance when you thought progression in the past. Though I think my progression might be more clear then the scares you spoke of. Happy for you! And for all who have long term results.
Thanks for reading. Appreciate any thoughts on what I should do. In meantime I'm on my off week and I'm supposed to continue on cycle 9 until we devise a plan. I'm nervous to know we're just watching stuff grow right now but grateful it is slow-ish ??, I'm stable in most areas and nothing new popped up elsewhere.
Sorry this was so long.
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I just received further good news: My CA15-3 went down to 71 (was 130 at the end of March, by then already having come down from the highest value of 172 in early Feb). It appears that I had a nice and prolonged tumor marker flare while Ibrance was doing its job (started treatment in Sep 17, original CA15-3 was 38 at de novo dx). Another reason not to abandon Ibrance to quickly and definitely not because of mere tumor marker values...
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Hey Nettager,
I'm so happy Ibrance is working for you
Ashlyn,
Not sure I'd be able to give you any advice. However, I had a biopsy lately (ie after my second mets anniversary) which showed I moved from slightly ER/PR to TNBC. Together with the biopsy, we are performing a "sequencing" (not sure how it is called in English) to study the DNA (and based on the results eventually take part to a study). So the only advice I'd give, is : if you finally decide to go for the biopsy, ask to have the sequencing done at once. So at least you won't need a second biopsy to do so.
To all : sending you lots of love ! I'm happy to see Ibrance does the job so well for you.
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Ashlyn, I don't know that my advice has any value at all, as I have not had your experiences. And I'm in the States. However, in reading what you said, and were it me, I'd have proceed with the dreaded bronchoscopy and get results so that you could be sure that you were following the best treatment path for whatever is going on. We want you to have LOTS of "fricking summers"!
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Cure-ious..... thanks so much for once again being ahead of the game and giving us links to trials. Very encouraging.
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Hi;
I'm sure I've missed your comments on this or just didn't understand what was being discussed but I've been told that Ibrance has failed it's Phase 3 trial and not shown OS benefits for us. What does this mean? I really appreciate the comments. Thank you.
Cathy
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I just wanted to give an update on the 5 days on/2 days off dosing. I started this a few weeks ago and feel quite good. However, I just got my blood test results from last Monday. My white blood count is at 1.3, which is the lowest it has been in over a year so I may have to switch back to the 21 days on/7 days off. I'll give it another month unless my MO suggests going back sooner.
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Kelli- I am also on Ibrance/Faslodex/Xgeva.....125 mg Ibrance from the get go. 36 months with very little to no side effects. Blood counts okay every month. Extensive bone mets but stable with each scan. Honestly, sometimes I forget that I have the ugly C word!
Best wishes for continued good results for all
MM
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Ashlyn, Sorry IF didn't take everything out!I It sounds like your MO is being deliberate and strategic, and wants to get as much information as possible out of a biopsy- as Yaelle says, even get it sequenced if they can get enough material. If its now triple-negative, the Faslodex won't work anyway, and you'd probably still have to do a biopsy at that time. What I never understood about these mixed results scans is if you need to stay on Ibrance-Femara for the bone mets, but then add in something else for the potential triple-negative lung mets? Anyway, triple negative does respond to immunotherapy, plus the ongoing trial of Keytruda with CDK4,6 inhibitor Abemaciclib looks like that immunotherapy might also be able to boost CDK4,6 inhibitors, so adding immunotherapy might help both responses, in addition to whatever else they suggest?
Chicagoan- Oops, 1.3 would be a high reading for me, I'm normally barely hanging in at 1.0! Since I'm trying the 5 days on and 2 days off (and feel good), it will be interesting to see what my bloodwork comes back like on Monday. If neutrophils have crashed, I'll ask to reduce dose (and still keep trying the five on, two off)
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Thanks for your replies ladies!
Yaelle and Cure-ious: I specifically asked if I could get sequencing done but it would be out of pocket. Which I don't have. Is Foundation One the only route to go for this? Previously I had sequencing done for free last September through the POG (personalized oncogenomics) study here in British Columbia. It missed my PALB2 mutation but found it after I had confirmed PALB2 through Color's 30 gene panel. I asked if we could resubmit this new sample if I biopsied to POG and I was told no. For me I would like to know if there are any changes other than just estrogen status for this bronchoscopy to be worth it. My recovery takes a week and I lose weight each time,which being light I can’t afford. Im supposed to be going away mid July too so the thought of this before hand is not ideal.
Cure-ious I mentioned the Abemaciclib and Keytruda trial but not sure I could even be apart of it from where I am located. Also I have no bone mets. My mets are only in my lungs. Some responding and two not. That's why it feels weird to me that I'm having mixed response in one area.
Chicagoan: 1.3 sounds high! I haven't been above 1.2 since starting Ibrance. (I'm on 75mgs and at 0.5-0.7 in my off week usually)
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Chicagoan, let me echo that 1.3 would be high for me, too.
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My WBC is usually around 1.9-the highest it has been on Ibrance is 2.2. But I was thinking about this-since I started 5/2 mid-cycle, it may not be related. If I had stayed on the 21 day cycle, today would have been my last day. We'll see-but I do prefer the 5/2. I found that I got completely wiped out by the end of my 21 day cycle and also felt very fatigued during the off week. I like having the Ibrance in my system with just mini-breaks!
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chicagoan, If it is your WBC that is 1.3, then yes, that is very low. If it is your ANC, or neutrophils, then that is higher than mine have been since I began taking Ibrance 2 years ago. The only exception is when I took a four week break for surgery.
Seaway, I read an article stating that Ibrance and Faslodex failed to show a significant improvement in overall survival. I did not see any mention of Femera and Ibrance, so I don't know if there is data on that combo. I am taking the article with a grain of salt because I do not think there has been enough time to determine the true survival outcome of people on Faslodex and Ibrance. Some big questions I have are, for example, "If someone stays on the combo for two, three, four years or more,is the OS longer than someone who was on Faslodex alone?", "If the PFS is extended, but the OS is not, does that mean that the PFS on subsequent treatments is less for people who have been on the combo than faslodex alone? If it is, then why?" I am an optimist and choose to believe that the report isn't the final word, and someday there will be revisions. Either that or the number of exceptional responders will increase.In any case, that OS stat is a tricky one to determine. Here is the article for anyone who is interested.
(Reuters) - Pfizer Inc said on Monday a combination of its breast cancer drug, Ibrance (palbociclib), and fulvestrant was not statistically significant in extending overall survival in women with hormone receptor-positive, human epidermal growth factor receptor 2-negative metastatic breast cancer whose disease has progressed after prior endocrine therapy.
Ibrance is Pfizer's blockbuster treatment and is already approved as a combination with endocrine therapy for use in breast cancer patients. The treatment brought in sales of $933 million in the first quarter of 2018.
Pfizer said on Monday the results demonstrated a positive trend in the hazard ratio favoring the IBRANCE combination, but failed to reach statistical significance.
An interim analysis of the PALOMA-3 trial in 2015 showed that the Ibrance combo had met its main goal of progression-free survival, or extending the length of time a patient lives without the disease worsening.
The company would present detailed data on the trial at an upcoming meeting.
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Reuters Health Information © 2018
Cite this article: Pfizer's Breast Cancer Drug Combo Falls Short of Survival Goal - Medscape - Jun 25, 2018.
Hugs and prayers from, Lynne
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The number I am using is the white cell count from the CBC test.
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Seaway- cure-ious and I had an exchange about the study yesterday or the day before. I won’t repeat it all but just suggest you scroll up and read Cure-ious’ take on it.
My bottom line is to largely dismiss it as insignificant to us ... and to the in fact be pretty encouraged by some of the other research results that were also published a few days ago about other treatment pathways that are showing promise.
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Overall survival (OS) is hard to demonstrate, especially in cancers where people can live for a long time with the illness. ER+ MBC is that kind of cancer now. The research has to follow the participants for a long time. In the case of fulstravant and ibrance the combo had to be better than fustravent alone. Because some women live on long time on fulstravant alone, there has to to be really long follow up to see if adding Ibrance helps. Most drug companies don't want to continue a study for 8 or 10 to get the data. They want to get the drug to market so they can recoup their costs and make money for their shareholders. I suspect that given enough time to follow up, there will be a an OS advantage for the combo, but it will take more time to generate the data.
Hobbes/Jo
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Thank you to everyone that replied. Tears were running down my face when I read your messages. They were so informative, supportive and uplifting
My goodness, I am so amazed by all of you and appreciate your kindness I took my first pill (125 mg) before I logged on. I will follow the advice of going back and reading this thred.
I've joined you on this Ibrance dance, and I am thankful to have found such great support. This has really helped ease the anxiety and the worry I was carrying with me.
Love and hugs to all,
Kelli
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Kelli, I just clicked on your name and read your profile. I pray that it encourages you that I too was diagnosed at the age of 44. Others here were diagnosed when they were young too. Guess what! I'm now the grandmother of a girl the age of your daughter! I remember in 1994, thinking I wouldn't live a long life and here I am at 68. I've had breast cancer a number of times and each time there was a medicine that wasn't around the last time. I can hear your first Ibrance capsule working all the way down here in Memphis and I look forward to hearing about your grandchildren in the future!
Love from PatG
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Kelli, I, too, was 44 at initial diagnosis of BC, and here I am, frisky and doing well on Ibrance at 72. Hang in there, girl...we've got your back!
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Is it not possible that even if OS overall survival isn't significantly improved by a particular drug, the lack of progression for a longer period of time could mean an improved quality of life during that interval. That has to be factored in.
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Husband- Agreed, plus none of these are curative, so we need good PFS numbers to choose the best therapy at the moment, hoping that something better will be available when we progress...
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njgirl. I was DX with my first BC at 44, too! Now. I'm 70. If I try to run, I do get SOB. Ha But otherwise, glad to be here. Ibrance is still working great for me, 18 months later.
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Grannax....you've tried to run? Have you lost your mind?!!!
Love from PatG
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