Ibrance (Palbociclib)
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I have been on I/L for three years and have been NED for 2 1/2 years. Started at 125, then reduced to 100 mg after a few months due to fatigue. Am now reducing to 75mg and hoping for a spurt of energy. So hang in there ladies! There is lots of hope. And congrats to all of you with good scans, may you havemany many many more. And for those just starting, jump on in!
Kitty
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Dear ladies, is anyone here who was given Ibrance with antihormonals after the metasectomy due to oligomet (f.e. liver ablation or ablation of metastasis in lungs) which put them into remission? I had resection of single low grade liver met in november, that made me NED and MO prescribed only AI (exemestan). She said that she would add palbociclib only when I progress. But I think why wait. Is it also used for low burden disease (CTC), that it can not be seen on Pet or MRI? Thank you.
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iwrite- I started getting dizzy on my second round of ibrance. I am on my third now and experienced a little dizziness last week. Did your Dr. Tell you what can be done for it?
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Seaway, such great news about your scans!Lakewoman, I'm so sorry about your awful night. I'll expand a bit on my advice to "drink a lot of water". I didn't fully explain, as I didn't want to give Sparrow further unnecessary worries. A handful of us have experienced an odd "puff of smoke" shortly after taking our Ibrance capsule. I think that the Ibrance capsule must dissolve pretty readily, and when it isn't washed all the way down the pipe, so to speak, it can start to dissolve early, and a little ladylike burp can send a most disconcerting and unexpected puff of Ibrance powder wafting out of your mouth and nose. It looks like smoke! Neither my onc nor my onc nurse had ever heard of this, but several of us here of the site have experienced it. I've had it happen three times in the past. HOWEVER..... if I drink a full glass of water with the capsule, washing it fully down and then doing a little burp at the end, I haven't had a problem since.
Hugs to all and a happy dance for all of the great news! Lakewoman, you'll be back out casting in no time! Catch a speck for me!
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I was just reading a string in Inspire.com (the string is titled, "Best Ibrance Outcome") and it's very encouraging. Some of you may want to take a look at the experiences of some others:
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Lakewoman - I'm so sorry you had such horrible nausea. That's one thing that's I have not experienced at all with Ibrance. I take mine right before bed, typically not with food, but I do drink water. I have a pretty strong stomach though. I think I've thrown up 2, maybe 3, times total in my 48 years of life. My skin is another story and I do get the Ibrance rash.
Seaway - I asked my doc about a biophosphate and he said because I only have (had?) the one bone met, it wasn’t worth the side effects. I may ask again though. Seems everyone with bone mets take them. Your doctor may not prescribe since your bones are clean (Yay!) but I’d be curious what he says.
Maaki - I am oglio also and I take Ibrance. It’s worth asking.
Joyner - thanks for that link. I read Inspire here and there but missed that thread.
Have a great day everyone!
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Sparrow, I'm sure you've already taken your first dose by now, but I've said it over and over on here - if I had known what kind of results I'd get, I would have danced around the kitchen while taking that first capsule! My former oncologist told me I was Stage 4, incurable, and there was nothing they could do. My 2nd opinion, now my current oncologist, prescribed the Ibrance. I was scared, but faced with "incurable", I was willing to try anything. I had very little side effects (most were in my mind, honestly!). My 6-month scan showed no activity, and my bone lesions had healed completely. 1-year scan will be in July, and I expect the same!
If you look at my picture there, that's me, at age 56, riding an ATV in the Nevada desert during my 8th cycle of Ibrance. I like to say, that's MY "new normal"! I had never done anything even remotely like that before (strenuous activity for me, before, was eating while crocheting), and there I was, taking a 4-hour tour over rocks, sand, and hills. I had a blast, and can't wait to go again. Ibrance is absolutely do-able!!
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TY to Ibrance friends for once again being there for me.I might not catch a speck.But my hubby just helped stock 5000 browns and lakers!!! We really prefer to catch Crappie aka Calico bass. Soon I hope..
Today time to get off my butt and go for short walk..Tomorrow few min on stationary bike!! Oh also to dentist today ..made appt yesterday. Tune in this evening lol!!
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Lauren, I would have PM'ed this to you, but it may be important to someone else. I note that you said that you take Ibrance at night but not with food. The Pfizer oncology nurse told me specifically that I should eat before taking Ibrance, as it works better with food!
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Works BETTER!?! ok then, joyner, with food from now on! Thanks for that
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It specifically states on my bottle of Ibrance to "take with food"....I take mine with dinner and have never had an issue.
hope
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Thanks folks - i assumed the 'with food' guideline was just due to potential tummy issues, which is generally not a concern for me. I take all of my pills at night right before bed to avoid having to carry Ibrance with me depending on where I am at dinner time (straight from work to out to dinner, at the ball field or hockey practice with my kid, etc). Maybe I will just eat something at night like an apple or some crackers. I will lose them if I start carrying them around
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Lauren, when my Pfizer nurse told me to take Ibrance with food, I immediately thought the same thing you did and said, "To reduce nausea?". Her prompt response was, "Most people don't experience nausea with Ibrance. You take it with food because it works better".
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Congratulations on great news Cathy and Nettger! The sun shines brighter when we get good news!
I was also freaked out by the Ibrance packaging at first. After 30 months I’m now cheery when the package arrives
The dizziness I’ve been having happens both when I’m on the drug and during the time off. One doc thinks dizziness and balance issues are due to neuropathy in my feet and bad vision. Another thinks it's something else... trigeminal nerve irritation in the brain or something els. The meds I take helped for awhile. Most of the time it’s simply annoying. More scans next week plus another brain MRI to check it out. Not terribly worried, but I hate worrying my DH ,DDs and SILs!
It’s a beautiful day so I’m just going to enjoy life
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Maaki- I agree with your idea, would want to get the Ibrance up front (firstline with your AI), in order to get the longest time possible before progression, not only because you have low burden of disease (oligomet) but also because every time there is progression you have selected for a mutated variant cancer cell, which could be more aggressive or harder to beat back. In addition, why "save" Ibrance for later when there are other CDK inhibitors you can try at that point (Abemaciclib acts differently) plus the whole idea here is to be able to hold on long enough for additional therapies to get approved or at least get far enough along on trials so that you can determine which ones look more promising than the others...
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Food increases stomach acid, which aids in the absorption of palbociclib. For that reason, drugs or substances that reduce stomach acid also reduce the levels of the drug in your body.
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A nicely-written current review of the CDKinhibitors/Ibrance:
http://www.cancernetwork.com/breast-cancer/cdk46-i...
For Maaki, they do discuss how low volume cancer like yours could respond for a long time to anti-hormone therapy alone, as your MO suggests, but also say there just aren't data to compare the benefits of taking Ibrance later or earlier.
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Thanks all you wonderful ladies!
Your posts have helped a great deal. I think when I saw that scary warning all of this got real in a hurry, if you know what I mean. My Oncotype DX score was low at my first DX so I opted out of chemo. The thought of it scared the liver out of me as my mom used to say.
I don't regret that decision.I have no wisdom to share yet but I appreciate every one of you and wish you the very best!
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Hi all; thank you I'm still celebrating my bone scan 😂😂😂
Lauren, I'm going to ask my onc on the 24th when I see him about the biophosphanates. Perhaps even a low dose would be good. When I was taking arimidex early on I was put on a pill to counter the bone effects. So I'm thinking that might also be good with the letrozole....and bone mets.
Have a good day all,
Cathy
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Hi All,
I don't post often but have been following many of your stories. You ladies have continued to give me courage with your success stories. I take the information written here to heart and along with you all hoping for many many years of happy long life ahead.
With many new members, unfortunately, joining us here, I want to say that I am doing well as well. I have completed 4 cycles of Ibrance. The SE have been very tolerable. I take a 20 min cat nap in the afternoon, and am able to carry on regular tasks of working, caring for my family and young daughter. I remember how nervous I was when a fancy pill box arrived at the door and prayers I said before swallowing that very first pill. Thankfully, nothing was as fearful as what I had imagined.
On an even better note, the scan I had last month showed "significant improvement" as per the bottom line of the report. Many of the small tumors have disappeared from the lining of the lung. Bone mets looked stable and liver mets shrunk by a bit. I was too busy shedding my tears of joy that I didn't ask about the details of the report. But, for now, stable is good. Happy to know that many others have had success stories recently....let's do our happy group dance!
There is so many information here to digest. Regarding, dizziness - hydration helps! I was also told to always drink lots of fluid to flush out the toxins in the pill. If the toxins stay in the body for too long, it will effect the liver and kidney. Taking the pill with food is a must for me as well. I also try to never be hungry as then stomach pain sets in.
Piggy: Good luck on your scan today...waiting for your good news!
Sparrow: hope this journey takes you far and long.....you can do it!
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thereishope, from way down here in Memphis, TN, USA to way up there in Ontario, Canada, I send huge congratulations! Fly your "significant improvement" flag high!
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Seaway and thereishopeforus, I'm so glad to see you are having good results!
I have a question. From the Ibrance website, "Ibrance (chemical name: palbociclib) has been granted accelerated approval by the U.S. Food and Drug Administration to be used in combination with the hormonal therapy Femara (chemical name: letrozole) to treat advanced-stage or metastatic, hormone-receptor-positive, HER2-negative breast cancer that hasn't been treated with hormonal therapy before in postmenopausal women."
My ONC has put me on Ibrance and Femara. When I was first diagnosed 9 years ago I was premenopausal, had surgery, rads and took Tamoxifen for 5 years. Now I am officially in menopause. Why would my ONC prescribe this drug regimen knowing I have previously had hormonal therapy? Probably something I should ask her, and I will, but does this sound familiar to anyone?
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I think almost all of us have been treated with prior hormonals (except for the MBC at diagnosis ‘de novo’ folks) so perhaps they are talking about prior hormonal therapy after MBC? I think oncologists are getting very liberal about using Ibrance. Many of us have it in combination with a hormonal other than Femera (I get faslodex)and I am getting it even though I am her2 + (which isn’t yet FDA approved).
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there is hope - so happy for your awesome results!!! YAY!
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Sparrow, I'm taking Ibrance with Arimidex and had been treated with Femara after chemo for MBC. I have other friends who took Tamoxifen followed by the whole variety of AIs and they're taking Ibrance + hormonals. I'm so happy that doctors have lots of flexibility in treating MBC.
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Sparrow;
I too had arimidex for 6 years from 2005 to 2011 and am now on Letrozole. I believe it is a time thing. It's been many years since I took it. Other more knowledgeable will comment but I believe this is what he told me. You’d be hard pressed to find anyone not stage 4 at original diagnosis with hormone positive disease who hadn’t taken tamoxifen or an AI
Best wishes for great success,
Cathy
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Sparrow, if I understand your question correctly, the only reason she would have to NOT put you on Ibrance-Femara would be if you had been taking an aromatase inhibitor at the time when your mets were discovered. If they developed when you were off of tamoxifen, then there is no reason to suspect the cancer would not still be sensitive to estrogen deprivation. If you had developed mets while on an AI, they would probably have started you on Faslodex (estrogen degrader) plus Ibrance.
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I knew grapefruit and juice a no no.but in reearching a few things discovered Seville oranges a no no too..and a warning some marmalades use that kind..Mastectomy pain easing.Didn't even take a Tylenol today..Dentist did filling back of front tooth in half an hour..no charge..she likes my guy and I ..She was reviewing Ibrance side effects when I got there.I told her about reading about not using floss or toothpicks..Any comment s on that?.Great boatride with hubby and our Canadian neighbor!! Here for their long weekend!
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ASCO is a huge cancer meeting (30000-40000 researchers) held every year; the 2018 meeting will start June 1. Look for news to come out on June 3, when they are covering breast cancer. The abstracts were just released so I'm slowly working through them, not too much thus far (and you can't learn much from abstracts anyway). but here is one on Ibrance side effects, from a hospital in Dublin...
Conclusions: To our knowledge this is the largest real world analysis of the AEs associated with Palbociclib therapy. While a significant proportion may experience neutropenia, this is often uncomplicated. If dose reductions due to neutropenia are warranted this is not associated with an increased likelihood of progression. While the PALOMA III trial reported a 2% incidence of thromboembolic events, we observed a 9% incidence rate. It is difficult to ascertain whether these events were palbociclib related or disease related, thus clinical suspicion and awareness are paramount and further studies are recommended to determine if prophylactic anticoagulation may benefit these patients.
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Hhmm, here is the abstract for the JPCE trial, testing immunotherapy with Abemaciclib for HR-positive, HER2-negative disease. Safety is OK but any sign it works?! Gives next to no information, beyond that they got an ORR of 14.3 % which sounds discouraging- but they don't give a timeframe, unless that is perhaps six months?
Abstract:
Background: Abemaciclib is a selective inhibitor of CDK4 & 6 approved to treat HR+, HER2- metastatic breast cancer (MBC) patients (pts) as monotherapy and in combination with fulvestrant. In preclinical models, abemaciclib administered with anti-programmed death-ligand 1 (PD-L1) antibody therapy synergistically induced anti-tumor response and immunologic memory. A Phase I study (JPBJ, NCT02079636) of abemaciclib plus pembrolizumab (Merck & Co.), a programmed death receptor 1 (PD-1) antibody, demonstrated stable disease in 65% of pts with stage IV NSCLC along with a generally manageable safety profile. Methods: JPCE is a multicenter, nonrandomized, open-label, Phase 1b study of abemaciclib plus pembrolizumab in pts with HR+, HER2- MBC or stage IV NSCLC. Key eligibility criteria for the MBC cohort were: HR+, HER2- MBC with 1 - 2 prior chemotherapy regimens, measurable disease, adequate organ function, ECOG PS ≤1, and no prior treatment with CDK4 & 6 or PD-1 & PD-L1 inhibitors. The primary objective was to assess safety of the combination per CTCAE v4.0. Secondary objectives were: objective response rate (ORR), progression-free survival, duration of response, disease control rate, overall survival, pharmacokinetics and pt-reported disease-related symptoms. Pts received the maximum tolerated dose established in JPBJ; orally administered abemaciclib 150 mg twice daily plus IV administered pembrolizumab 200 mg, day 1 of each 21-day cycle. Results: Twenty-eight pts were enrolled in the MBC cohort. Abemaciclib plus pembrolizumab demonstrated a generally manageable safety profile in pts with HR+, HER2- MBC. Single agent toxicity profiles reported previously were not exacerbated, and no new safety signals were detected. Initial ORR was 14.3%. Patient PD-L1 status by IHC staining (positive ≥1%; negative < 1%), efficacy, and safety data from the 24-week analysis will be presented. Conclusions: Abemaciclib plus pembrolizumab demonstrated a generally manageable safety profile upon initial review (Rugo et al. SABCS 2017). Assessment of the effectiveness of this novel combination, with reference to PD-L1 status, for the treatment of pts with HR+, HER2- MBC is ongoing. Clinical trial information: NCT02779751
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