Ibrance (Palbociclib)
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weninwi- Last January my PET showed 2 liver lesions with a third that was likely metastatic disease. My MO followed up with an abdominal MRI to get a better picture of what we were up against. The MRI showed the same 3 lesions plus 2 additional small ones. Based on this information and knowing I had significant bone progression as well, we switched from CDK 4/6 inhibitor to Xeloda. Abraxane and Halavan were other options we discussed. I’m happy to report that my last scan showed tremendous improvement. But just because mine were metastatic doesn’t mean your indeterminate lesion is cancer. It truly could be something else. I’ve read about the accuracy of various scanning modalities with liver lesions but you have lobular so what I’ve read may not apply. Can you research or discuss with your MO if a different type of scan may add clarity
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I hate this, "It might be, but it might not be, but it could also be (fill in the blank)." It gets so frustrating and we're always wondering if that new ache (is it new, or has it been there a while?) means that we have new mets.
I feel like I'm full of new pains all the time. I'm happy to read when someone is stable but sad when I read someone has new mets.
Carol
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Thanks to all who responded to my post. It just helps to know someone is listening and understanding. I always learn, gain insight and courage. Recent news about a colorectal cancer treatment study with Dostarlimab that resulted in complete cure is so encouraging. It's a small study (~12 patients) but all cancer free.
Wendy
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Interesting article in Living Beyond Breast Cancer: https://www.lbbc.org/news-opinion/palbociclib-does-not-improve-overall-survival-metastatic-breast-cancer. I apologize if someone else posted it
Not sure what to think and will definitely discuss it at my MO appointment on Wednesday. As a side note I had a hip replacement a month ago and have been off Ibrance starting a week b4 surgery. I can’t describe how fabulous I feel - lots of energy - I’ve gone from Eyeore to Tigger. I’m sure after my MO visit I’ll start Ibrance again and return to Eyeore land😔😔.
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Goldens - In regards to your article - well ain't that a kick in the pants! If you don't mind me asking but what side effects went away for you? I am on XGEVA, Ibrance and Faslodex and wonder which might be causing what side effect. I realize everyone is different and that some of these drugs overlap on side effects but just wondered. I am glad you got at least a little rest from the drugs.
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Just for purposes of discussion, I too was recently off Ibrance for 5 weeks after I broke my leg. Unlike Goldens, I did not notice anything different from being off of the drug that long. I was more fatigued than usual when off the drug but I think that was because my body used a lot of energy to heal two broken bones. I resumed Ibrance and still feel pretty good. I guess I am just reporting this because it seems we all have different reactions to the drug and/or its absence.
As far as the study goes, I was extremely sick when I started Ibrance/Letrozole. So far I have had 5 and 3/4 great years. I have had a higher quality of life than I ever dreamed possible when I got my diagnosis. Of course, this can all change in an instant. Anyway, Ibrance has been a miracle drug for me-even if it stops working tomorrow-it gave me a lot of good time with very tolerable side effects.
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So might this mean that insurance will quit paying for Ibranc?
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Lots of interesting stuff here. Re side effects: I am just finishing up my first cycle back after 6 months off for mastectomy and radiation (plus healing times). The first time round last year, I don’t really know how I felt. I was still in shock w the de novo diagnosis. I had a month of just letrozole in the very beginning where I was definitely a little tired, but nothing major. Then the Ibrance. I was shaky and felt plain run down.. My Anc went way too low on 125, so took an extra week and lowered dosage. Same on 100. On 75, my ANC never dipped below 600 so thats where I am. By my 6th cycle though, the cumulative fatigue was really apparent to me. Then time off to prepare for surgery. WOW! I got SO much done!!! So much energy!!!!! And it kept up during my recovery. Then radiation, again with cumulative fatigue- but different because while very tired at times, I didn't feel like I'm constantly fighting off a bug. I continued letrozole the entire time except the week of surgery.
Now at the end of my first cycle of Ibrance this 2nd go around, I'm more prepared. But I had some new tummy troubles the first week. Then a rash the 2nd. I need my naps, and the weirdest thing is I get shaky with too much exertion. I have to really pace myself carefully. So it's definitely the Ibrance.
The primary tumor (which was removed) shrank during treatment and no progression on the oligometastic mets, so I am willing to put up with the weakness.
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I read the disappointing study result when they were first published. What I don't understand is why overall survival stats haven't been published for the arm taking Ibrance + Fulvestrant. If I'm remembering correctly the I + L arm had better PFS then the I + F arm. What about OS?? It's too late for me but I'm glad to read that they now started studies comparing CDK inhibitors to one another. If the stats have you worried, remember that clinical study results can be different then real world stats.
On my break between lines of treatment I felt amazing. It made me wonder if these drugs are really worth it. But I’m still plugging along on Xeloda. Fortunately, I have fewer SE on Xeloda then either I + F or Verzenio/anastrozole. It’s not a walk in the park but I consider it a win. Especially since my last scan showed tremendous improvement.
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Cowgal - I certainly don’t mind you asking and I hope all of us on these boards are comfortable enough to both ask & answer because we’re the ones who really live this stuff! The only real side I had from Ibrance was fatigue. It was horrible at 125 mg (I was on that for 6 months) and when dropped to 100 mg the fatigue was better but still caused problems. I also had horrible leg pain with letrozole which went away when switched to anastrozole. So I was in my week off Ibrance just b/4 surgery on 5/10 and my MO said to wait to start it again until I see her on 6/15. Obviously I was tired from the surgery but during these past 2 weeks I’ve felt like the energizer bunny. In fact I’ve had 2 close friends comment that I just look happier! So I really dread going back on it. I also had been off Ibrance 2 other times (once for covid and once for sepsis). The fatigue returned both times so I don’t expect anything different when I start again. And what level of fatigue do I have - I can’t make it through a grocery store and I generally crash by 3-4 pm. I need to rest from taking a shower. Getting any part of dinner ready is nearly impossible. If I set the table, I’m done. Thankfully my hubs is retired and he steps in. Maybe I’ll ask my MO about dropping down to 75mg when I see her Wednesday
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Re the discouraging study that Ibrance does not improve overall survival. https://www.lbbc.org/news-opinion/palbociclib-does-not-improve-overall-survival-metastatic-breast-cancer.
I just saw my MO on June 9. My most recent scans show possible progression (new lesion in the liver), but my MO said nothing about the study and my treatment plan was left unchanged Ibrance + Letrozol except for next scans sooner i.e. in 2 months. I assumed my MO keeps up with the latest developments, so don't understand why she said nothing. I sent her a question re study; hope she responds.
Has anyone here looked into intermittent fasting or talked with their MO about this? There are several different approaches to Intermittent fasting (distinct from complete fasting).
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goldens, the fatigue is something that a lot of people just don't get, right? It can be so frustrating. Sometimes, I feel like even my MO brushes it off as an "Oh, well." I worry about commitments to do stuff because I don't know how long I'll last.
weninwi, I'm interested in intermittent fasting. There's a program out there called Prolon, which I believe is IF, but it's expensive. I see all the hype about it and have even had one person say that it cured cancer. Seriously? I have tried it off and on, but I think I need to stick with it to see if it will help me lose a few pounds. I'm 17 pounds heavier than the day I was diagnosed with MBC. I hate it, but not enough to actually do something besides whine about it. Have you tried it, and are you using any specific program?
Carol
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I can see when I requested a home PCR test for Covid and each and every time it was at the end of my third week of an Ibrance cycle. Towards the end of my run on the drug I felt so dragged down and sick - sore throat, sneezing/cough, etc that I honestly thought it was Covid! The month off for surgery was such a relief and I know I smiled a lot more and looked so much happier then too. Like a glimpse of the world you left behind.
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“Like a glimpse of the world you left behind.“ So true! I had actually forgotten what it was like to feel normal. Oh well…this is my lot in life and others have it worse. I just have to tell myself to carry on.
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I was attributing it to allergies, but I have also had a sore, scratchy throat, congestion, etc starting around day 18 or so for the past couple of months. I feel like I'm in a constant state of fatigue and brain fog, and have insomnia most nights, but that could be from the letrozole or even from induced menopause. I did have a weird burst of energy today and spent the morning cleaning out the pantry. 😆
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Li77 - I also had insomnia, I think due to age-related reduced melatonin levels and chronic worry/stress, but have had good results with a low dose melatonin supplement 1.5 mg IR/XR (immediate release and extended release) that I get from amazon. My MO and cancer pharmacist are OK with this low dose and it definitely has helped me. Also, Dr. Roger Sehuelt MD has a YouTube channel called MedCram and he has an interesting lecture "Light As Medicine" re how exposure to certain light wave lengths affects our circadian rhythm and sleep, etc. I've started of follow some of his easy suggestions. Certainly worth watching.
sunshine99 - have not yet tried intermittent fasting, but have started to think about it. I know of two approaches - time-restricted and caloric fasting. I already follow a time-restricted approach to a modest degree in that I do not eat after 7pm. The website that goes into more detail on these approaches is, I think, verboten to mention on this site (I haven't kept up with all the rules), so if you're interested let me know and I'll PM you.
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BevJen,
I notice your LIC treatment history includes Microwave Ablations of Liver mets. This treatment option has never been mentioned to me. Did it work for you? What was the treatment like? My liver mets reduced in size on Verzenio, but now I have a suspicious new one. Wonder if Microwave ablation would be a treatment option for this new lesion.
Wendy
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Thanks goldens for answering my question. I am glad you got some relief but having a hip replacement was a rough way to do it! I had both my knees replaced at the same time in 2015 so I know your hip replacement was no walk in the park. I hope healing well and that your golden girls are taking good care of you!
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weninwi, I just sent you a PM with my contact info. Would love to know more about the fasting program.
Carol
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Wendy,
I had read about microwave ablations. When I was re-diagnosed with mets in 2019, I switched oncologists at the same time and had already contacted a doc about this treatment. Most oncologists are NOT in favor of it -- they much prefer systemic treatment. But I had 3 anyway. Upon the advice of a doctor at Northwestern, I had one lesion removed to see if that "turned off" the liver mets. It worked for about a year. Then another one sprung up. I had procedure #2. That one was not successful in that it didn't get everything that the doc intended. So I had procedure #3. After that, I switched systemic treatment and the interventional radiologist who I was working with said he couldn't do anything more for fear of affecting the liver adversely.
The procedures themselves are not very difficult to deal with. They are in and out the same day, done under twilight sleep. You could experience a little bit of pain for a few days. I will tell you that I haven't really had any progression in my liver mets since that time, but that's me. Others have not been as lucky.
I would suggest that you search for "microwave ablation" in the search box, and also y90. That's another procedure that folks have had. I don't see anyone mentioning it much anymore -- not sure why.
If you have any more questions, please feel free to PM me.
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omg, am I seeing that we all enjoy the "reprise " we get from time off for surgery? That's pretty bizarre. I assume that surgery is the stressful part for most people. I guess it's all a fine balancing act.
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To All,
I just got a response from my MO re the discouraging study that Ibrance does not improve overall survival. https://www.lbbc.org/news-opinion/palbociclib-does-not-improve-overall-survival-metastatic-breast-cancer.
She said the primary endpoint of the study (for which it was designed) was clearly beneficial......even if there was not a survival benefit.
This explanation strikes me as less than clear. I do not understand what the primary endpoint would be if it wasn't to look at overall survival....i.e. the whole purpose for taking these medications, correct? I'm not skilled enough to really understand all the details of the study.
She added most oncologists are not recommending a change off ibrance in patients who are taking it already. I'd like to know reasons for this.
I'd be interested in learning if any of you have had a conversation with your MO about this study and if a treatment change is being recommended or not, because of the study outcome.
Wendy
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Hi Wendy, I logged on just now to post a similar question about Ibrance, the recent study on Overall Survival not really improved and what does this mean to those of us on this medication!
I have been on Ibrance for 2.5 years now and at 75 mg have minimal side effects, scans have been NEAD for almost 2 years (have scans next week, 6/21). My quality of life is honestly good. I work full time and lead an active life. I have some joint pain but it was worse back in 2009-2015 on femara alone after stage 1 surgery/chemo/rads. Of course I am hoping my scans are clear next week. I also need to acknowledge that I am starting scananxiety this week leading up to next Tuesday which makes me feel moody and out of sorts.
When I have had the conversation with my oncologist about low white blood cell count after 1 week off Ibrance she has offered to switch to Verzenio or lower my Ibrance dose (the last time was over a year ago). I have told her I can't risk having the side effect of diarrhea as I would not be able to work at all with gastrointestinal issues - UNLESS she is recommending I switch because it is a better medication with better survival odds. She has told me in the past that they all were similar for PFS and OS.and the switch would only be for less impact on my WBC. She also has told me something like what Wendy was told and that it's really hard to compare studies as the pool of subjects is different etc etc and seems to brush it off. Since I lowered my dose to 75 mg in January of 2021 I have not had to take any add'l time off of Ibrance for low WBC so switching meds was never brought up again and she has never mentioned kisquali as I believe it also has low WBC as a side effect.
I found out last week that my oncologist is on medical leave. This makes me anxious, too! They don't know if it is short term or not so I have my scan on 6/21 and see a different oncologist on 6/27 that will be my temporary onc. until further notice. SIGH. I will send a message to my Onc. Nurse Practitioner to let her know that I want to discuss the recent Ibrance Phase 3 OS results and could I switch to Kisquali.
Reading this study makes me feel like a sitting duck, again. My oncologist has told me for the past 2.5 years we stay the course on Ibrance/fulvestrant until progression and then we pivot to another treatment, after getting a biopsy if possible to inform the decision. My oncologist sometimes brushes off my questions and wants me to be happy that I have stable disease - which I am grateful about. However, don't we all want the drugs that give us the best overall survival????
I welcome any comments from people with science/medical backgrounds to help us understand why we would not all want to jump on the kisquali train since that drug shows an overall survival (OS) of 63.9 months.
Cure-ious? Hoping to hear your opinion on this study.
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Aprilgilr1,
I'll keep it short so as to not crowd out comments from others. I would switch back to Verzenio if my MO would permit it, as I eventually learned how to manage and control the diarrhea - the dose matters. I believe Kisquali requires cardiac and liver monitoring. I agree, why would we not want to jump to another option? This is the best article I found that discusses ramifications of the study results, including financial affects on Pfizer if doctors stop prescribing it. https://www.fiercepharma.com/pharma/asco-pfizers-i....
Wendy
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Aprilgirl - If you have been NEAD for 2 years, I think you will be an outlier to the statistics - a super responder. 🤞🏻
Weninwi- the primary end point of the study was progression free survival (PFS). And that showed increased effectiveness in both the Ibrance/Letrozole and Ibrance/Fulvestrant arm of the study. So the median number of months before progression increased when Ibrance was added. It sucks that that median OS wasn’t increased but there are some that do super well on these combos and blow away the stats, so there is that hope. On the other hand, would these ladies have done just as well on Letrozole or Fulvestrant alone? We will never know. This is all disappointing for sure.
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RK2020 - thanks. I think I am having one of those days when everything seems hard and disappointing. I had a pity party today where I wanted to stay in bed but I went on a walk/hike with a friend and already feel a bit better. SO HAPPY that you had such good scan news and are doing well
Stage IV: "this is some bullshit" as SF-Cakes has in her signature line and I think we can all agree with it.
Sending everyone my
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Hi! Does Ibrance help with your bone pain in addition to killing cancer? I have a scan next month and assume I will be put on thisdrug.
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MaleBC, regarding your questions about CMR and whether it means remission, the paper said that people with CMR was the most likely group to achieve stable remission -- CMR by itself apparently does not equal remission. But then what is remission? Cancer.gov says this:
"Remission means that the signs and symptoms of your cancer are reduced. [article's emphasis] Remission can be partial or complete. In a complete remission, all signs and symptoms of cancer have disappeared. If you remain in complete remission for 5 years or more, some doctors may say that you are cured." Understanding Cancer Prognosis - NCI
Which brings me to the confusing Ibrance study that's being discussed. Why are we still on Ibrance? One clue may be the statement in the FIercePharma piece that Ibrance still has the best toxicity profile of the CDK4/6 inhibitors. Someone also mentioned that patients in better overall health tend to get prescribed Ibrance -- perhaps due to the "first do no harm" ethic? Regardless, the study about little impact on OS is depressing. But as PatGMcRee would say, we want to buy ourselves time progression free until we can take advantage of the next big treatment discovery -- or even a cure.
I mentioned that my retiring MO had brought up going off Ibrance if my July Pet scan is NED. I wonder if this report was why he suggested such a thing. When I meet with my new MO in July, we'll have lots to talk about.
AprilGirl, in your pocket for your scan next week.
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I’m still not sure what this new report about Ibrance means. Is it saying that women using it as a first line of treatment with an AI have longer progression free time than if they were only using an AI, but that it does not extend their overall survival more than women who did not use Ibrance? It’s kind of a delicate subject to discuss. We were all buoyed by the way it was said to be a major breakthrough in mbc treatment, so the latest on info coming out about the drug is disheartening.
To be clear, I was only on Ibrance four months, it was a third line of treament and did nothing for me. But I still follow the news about it.
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divinemrsm,
I also do not understand what this study means for patients, other than it's discouraging. Why would a doctor put a new patient on Ibrance or keep a patient on Ibrance? I was on Verzenio 27 months w/o progression, but had side effects that affected nutrient absorption, so I finally switched to Ibrance as recommended by my MO. I was on Ibrance only 5 months when first early signs of progression in the liver showed up and now at 8 months the progression is more obvious. Even though I just saw my MO, I'm going to ask for a new appointment to discuss if and why I should stay on Ibrance given the study result.
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