Ibrance (Palbociclib)
Comments
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Nicole- extensive bone mets from skull to knees, original cancer was grade 3 ER+PR+HER2-; mets were ER+PR-HER2-
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Moomala..i do know that I was Grade 3 at original diagnosis was in 2014. I just thought it said on the report the grade again...I figured out the GATA is related to the ER+ status. No I agree with you that just because you progress on Ibrance it isn't about the grade.. I just wanted to get a feel for what everyones grade is and if they do progess and how long they do get out of Ibrance just a whole picture because I do personally think Grade has a lot to do with stuff.
Thanks Cure-ious I remember now
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hi Nicole - have you listened to the dr Neil love podcast? If I remember correctly they discuss grade in this episode. From what I recall, they say that grade is not so important once treatment begins. I could be wrong about how I interpreted what I heard, as I listen to these podcasts at night and often fall asleep listening to them.
https://podcasts.apple.com/us/podcast/breast-cancer-update/id172326636?i=10004401209140 -
Nicole,
Dexamethasone is supposed to speed up the healing of your mouth sores.
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Thanks Philly
and Thanks Simone.. I am using it best I can 0 -
Moomala, I didn't know "lazy" was a medical term. I call my cancer lazy but never heard that term used by a doctor.
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Just a word she used in conversation for a cancer that took 24 years to re-appear Jaycee. The correct medical terms are in my chart.
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as I recall from a review of CDK4/6 INHIBITORS in one of dr Neil Love’s podcast from about 6 months ago- overall as a first line drug in post-menopausal women-Ibrance works in 45-65% of people- with an average PFS of 28 months. 30% of the patients had not received endocrine therapy before. At the time of the podcastThere are no known bio markers besides ER+ to predict who will respond.
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Has anyone been prescribed Ibrance for a supposedly non-metastatic recurrence? My original dx was 2013. Had bmx, chemo, and a few years of tamoxifen. Then came the reconstructions. 5 sets of implants which all looked terrible and finally SGAP stage 1 and 2. Just when I thought cancer was in the rear-view mirror, I found a lump which turned out to be a recurrence. Testing has all said it is a local recurrence only. No nodes, no evidence of distant mets, but after lumpectomy (x 2 for clear margins) and rads, I am being prescribed Ibrance plus Femara. Does this mean I probably have mets and my MO just isn't telling me or maybe it's not big enough to show up on tests? Everything I've read sounds like Ibrance is for mets. I am so so scared of these drugs.
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Thank you Curious, Nicole and Moomala for your responses. Curious, my MO offered to radiate a small met on my rib because it is causing me some pain. I refused at this time since it's a very faint pain. Do you think that there is any advantage to radiating at this time? I do hope that Ibrance will continue working for me too. It's encouraging to hear your experience. Nicole, first time BC I had grade 2, since stage 4 I didn't have any biopsy, so I'm not sure what grade I'm right now. Since Ibrance worked really well from the beginning it seems that they didn't feel the need to biopsy. Moomala, I'm sorry that Ibrance doesn't seem to be working for you. I had my first scan 3 or 4 month after starting with Ibrance it needs some time to work.
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maureenb- my MO said they were doing a study using Abemaciclib in non stage IV cancersto try to prevent Mets. Not sure who they are including in the study. Wonder if this is your doctors thought.
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Nicole , Simone and Holly...
I appreciate the answears...
I have some liver lesions which lie «hard to reach» so they can not take biopsi. So stage 3, but told may be 4... But now two years out in this «game»..... I get Ibrance. That is why i follow this forum... and the PALLAS trial forum.
I belive I am on cycle 23 now...0 -
Just as a side note re. vaccinations - I always send copies of my vaccine information to all of my doctors/pharmacy. If I get one at oncologist office, it gets sent to MD and CVS. If MD does one, it goes to oncologist's office and CVS. When I get the flu vaccine at CVS, both doctor's offices are notified, so the information (date, strength, lot number, etc) are on file everywhere I go.
When my husband and I had a pharmacy, he was certified in vaccinations, and that was standard practice for us - we'd have the patient fill out a form first, listing their physicians. Then they'd simply check a box to have their physicians notified. We always explained it first, and encouraged them to do it.
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Yea i think that's why MO's are doing now they are prescribing Ibrance even if people are not stage 4.
I don't know if I would want to do that because you are using it up. I would more rather try the drug used for malaria patients that they have a study running that it can prevent dormant CTCs from waking up.
NKB thank you for that run down on the podcast I didn't get to listen to yet so that summed it up
NKB and Philly...so I was not post menopausal so I don't know how much that would apply to me or to my curiosity about grade/statistics with Ibrance..but I was one of the ones that had not had any endocrine therapy prior to stage 4. So I am hoping that Ibrance will continue on for me for a long time though I do see a trend that Bone Met only people definitely seem to get more time on it and there are a lot more of them that last a lot longer on it. As opposed to Bone/Liver/Organ that is just my opinion from people I talk to here.
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I know how you feel NicoleRod. I'm hoping to stay on Ibrance because I"m tolerating it so well. Plus - after this 5 and a half cycles I kind of know what to expect from it which is comforting. After this roller coaster year of dx and fractured vertebra, I'd like things to just hush for a minute so I can settle. Ibrance worked really well on my lung tumor and shrunk it right down in three months but my bone mets had some progression. That did shake me up quite a bit, but I'm ok now. I get easily freaked out with changes anyway so I should have expected to be shaken up. Hopefully it's all for nothing and I can stay on Ibrance for awhile.
Ciaci yes I'm so happy to have pharmacy information shared. It doesn't always happen here but the two big major hospitals here, do seem to share my information back and forth. My PCP is in one system and MO is in another. Pharmacy on the other hand doesn't seem to be so reliable on that, so I find I have to make sure everyone's got the information myself.
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moomala I just prayed for the ibrance to shrink your bone mets and not have progression. I would have been freaked out too and will be if that happens to me. But we are here for you understanding how you feel this is scary all if this stage 4 stuff. ((((Hugs)))))
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Ciaci...that's the way it should be for everyone, especially if you are a cancer patient. It seems when I looked through my records yesterday that not everything has been shared with all doctors. Some of it may have to do with the electronic health records provider being changed multiple times. I also think that a doctor should double check before giving a vaccination though. I stupidly thought the pneumonia vaccine was yearly like the flu vaccine is. But if she had asked me first if I had one or the last time I had one this whole thing could have been avoided.
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Nicole,
Do you know what study that is for using the malaria drug?
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Maureen,
I've also read they were talking about using ibrance for adjuvant treatment. Just curious, how long did your MO say you would be on it?
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I was diagnosed de novo pre-menopausal and so I have been on nothing but ibrance lupron xygeva and letrozole since day one back on April 5th when I started all the meds. I am bone Mets only. But they were extensive, which scares me. It is difficult to imagine going down quickly (like within the next 2.5 years) as my MO told me 1-5 years life expectancy. I say screw them and plan to be here for at least 10-15 more, at least!!
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simone I dont remember the name of it I am not home right now but the study is at university in Pittsburg PA if I remember correctly I wanted to be part of it when I was stage2 but then a week later I found out I was stage 4
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simone I dont remember the name of it I am not home right now but the study is at university in Pittsburg PA if I remember correctly I wanted to be part of it when I was stage2 but then a week later I found out I was stage 4 if you dont find it through google let me know and when I get home I'll get it off my laptop
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LoveFromPhilly...My first MO told me 3-5 years. No one should give you a time limit when they don't know how you will react to treatment and also when there are new treatments all the time. I left my first MO because I didn't feel comfortable with her anymore after that. My new MO said we are in this for the long haul and he has an arsenal of meds that we can try when one stops working.
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Simone I am still not home but I quickly found this..I think this is it...(I saw it originally back in April)
https://clinicaltrials.gov/ct2/show/NCT02333890
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Nicole, I think this is the result of that trial:
https://www.ncbi.nlm.nih.gov/pubmed/31392517
Abstract
PURPOSE:
Chloroquine has demonstrated anti-tumor activities through autophagy inhibition and cell cycle disruption. This study aimed to assess the effect of single-agent chloroquine on breast tumor cellular proliferation in a randomized, phase II, double-blind, placebo-controlled, pre-surgical window of opportunity trial.
METHODS:
Patients with newly diagnosed breast cancer were randomized 2:1 to chloroquine 500 mg daily or placebo for 2- to 6-weeks prior to their breast surgery. The primary outcome was the relative change in measures of proliferation (Ki67) in primary breast cancer cells pre- and post-treatment. Adverse events and toxicity profiles were also evaluated.
RESULTS:
From September 2015 to December 2016, 70 patients were randomized [46 (66%) chloroquine and 24 (34%) placebo]. Ten patients who were randomized to chloroquine withdrew from study due to adverse events. Mean duration of drug intake was 15 days (range 14-29 days). There were no significant differences between the chloroquine or placebo arms with respect to either the percentage change (- 0.4 vs. - 1.2, p = 0.088) or absolute change (- 2.0% vs. - 5.2%, p = 0.066) in Ki67 index pre- and post-drug treatment. Although adverse effects were minimal and all classified as grade 1, the effects were significant enough to cause nearly 15% of patients to discontinue therapy.
CONCLUSIONS:
Treatment with single-agent chloroquine 500 mg daily in the preoperative setting was not associated with any significant effects on breast cancer cellular proliferation. It was, however, associated with toxicity that may affect its broader use in oncology.
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Vilma, I was the one pushing the radiologist to blast those two mets (one was solitary met in spine, the other a lump of smouldering mets on my hip)- not because of pain, but I was hoping to get a systemic abscopal effect, which is where blasting open the cancer can trigger the immune system to go hunting for mets throughout the body. Ibrance boosts our immune system function, and I would love to get some kind of immunotherapy to enhance that effect. Because that is not possible, I was hoping that radiation would synergize with the Ibrance, and then I added Celebrex in hopes it would unshield the cancer and further boost some kind of immune response. No idea if any of that actually happened, but if we had not radiated, I imagine that those two mets would be larger by now, and probably spreading around (assuming they were resistant to I-F). I especially sweated the followup scan, wondering if ten more new spots would pop up in the meantime, and that the radiation would have been for naught, but the scans were quiet.
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hi Jack5ie - i totally hear ya! It made me so scared that my armpits exploded with the smell of fear and stunk up the whole room. My poor parents and the poor nurses and doctor!! Having to deal with the serious smell of body odor from fear!! Phooey!!
I thought about changing MOs, but actually he’s been really great otherwise. I think he was giving me the raw statistics (which is that younger people stage 4 tend to have more aggressive cancers) from what I have read and understood. I think my amazing response to treatments has been a surprise (and a delight!) to everyone.
I guess I am in the boat of opinions where I don’t want to sugarcoat things. A “cheerleader” type MO might annoy me. That being said, I was planning my funeral that week and now I know I have some time. I have NOT gotten “all my affairs in order” to say the least
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LoveFromPhilly...I think all of us have gone down the 'I'm a goner' path. But the important thing is to keep hope alive until all hope is lost. It's a major part of our well being. There were a few other things that made me change MO's beside the 3-5 years comment. I felt bad doing so because I was her patient for 8 years, but it was something I had to do and glad that I did end up doing it. My new MO is realistic and doesn't pacify me, but he's also keeping me out of the 'I'm a goner' path. So here's to 10-15 more years...at least!
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Jackie i think i would have switched my MO to with negative depressing comments like that..
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RE: NED status
Say your scans show NED. Any stats out there on how soon the beast rears its ugly head again?
Gail Mary
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