Ibrance (Palbociclib)
Comments
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JACK5IE- Sorry to see you leaving the Ibrance Dance. But please keep posting to let us know how you are doing on Piqray.
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JACK5IE, I'm glad your results revealed something that there's a medication for! Have been thinking of you and wishing you headache-free days (I used to get migraines, ugh). Yes, like others are saying, keep us posted!
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Pat- yep, many times, unfortunately they say they will do something and never do. Blaming how busy they are on the lack of improvement. And its true, I do know how busy cancer floors are. I've seen 3 in my cancer labyrinth thus far. The temporary place I did my AC in early stage, the place I am now where i did Taxol - present treatments and a brief 4 visit saunter over to Sloan to get my ovaries out. beloved never got to see where I did my AC but it basically was a widened hallway with two mini hospital rooms on either end. in between the rooms was a long line of 26 chairs practically touching each other and barely separable by a curtain. Each of the 2 separate rooms had 3 chairs squeezed in them. Every chair was full 99% of the time (was where I met my beastie boy video enjoying mini snicker loving eating friend). So many of us crammed in, so close I thought I'd pull someones line getting up to use the restroom. Was connected to the main big hospital, I saw too much in the way of unpleasatries there, kinda scarring. Beloved said when I described what it was like there that their motto should of been "Shove the bastards in". When I was finally back at my stomping grounds i got to see the chemo suites here and thought i was in luxury to have my own little room and it was so much more quiet than that beeping/barfing room I was used to. But like I said during and post covid, down hill at my current place. Sloan was okay, lots of bells and whistles. My MO specializes in breast cancer and she is nice in the 5-6 mins I get with her a month. Its sad to think in terms of "At least I'm getting treatment"...but "At least i'm getting treatment".
Snowdrop - wow, talk about being the guinea pig. Its a real shame. I'm glad we have access to things like Ibrance, I just wish the care when we come in for our monthly's matched the good this drug does for people out there. Pat described good care, I just wish it was in more places, I know it exists.
RK- this looks awesome!! I really really like some of the things this drug has been shown to do and symptoms it helps with/doesn't cause. No Iv, no shot, oral medication, whats not to like? Taking the Sahara out of the va jay jay would be nice. Lets see where this goes!
Jackie - Actionable findings thats targeted, woo! Don't stray far. Piqray thread isn't busy often, your welcome to stay here with us, once a dancer, always a dancer
Now Just waiting for Candy's tempus to come back, still in your pocket Candy
My new liftchair arrives Wednesday. Popping wheelies with my new wheels. Packing little by little for the trip to see Beloved's father. I admitted to a dear stage 4 friend in these forums that I'm kinda nervous about getting a glimpse at a bit of the process if you know what i mean. I've had to be strong so much these last almost 3 years I only emote my weaknesses online, if i let weakness out in person, I'll just have the positivity police on my heels again. Happy Anniversary to me today. Lets go for 3 and take it from there.
Edited for spelling errors, whoops!
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Rabbit, "taking the Sahara out of the va jay jay" is tonight's drop-the-mic moment! Let's see how they approach that when the commercials for the drug come out!
Love from PatGMcCactus
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LOL @McCactus, Pat you totally understand!
I would truthfully like to see how they could work out putting a honest side effect reducing perk like that on a brochure tho 0 -
Thanks, Rabbit!! Lasofoxifene has been on fast-track with the FDA since 2019-it's a third-gen SERM, meaning its in the same class as tamoxifen, but more bioavailable, stronger- has positive effects on bone density and lowering cholesterol. Not only is it stronger than Faslodex, but it works far better on ESR1 mutations that can develop after I-F treatment and give rise to progression. This paper and others show it works great in mice, so hopes are high for the ongoing trials.
So the upshot is that following progression on firstline I-F, do a biopsy to see if the cancer has an ESR1 mutation- if so, its unlikely Faslodex will work well for long, and better options are in trials, including lasofoxifene, SERDs, PROTACs like ARV-471 and Enobosarm.. If not ESR1, you could try something with Faslodex, but still plan to move to one of these newer options after progression, in order to extend the endocrine therapy as long as possible.. Altho things can get scary with progression in liver, Hope Rugo at UCSF commented that the new drugs are so good, so she's had to re-calibrate what she considers "visceral crisis" that needs chemo- targeted drugs can work just as well and just as fast.
I forgot you'd asked about the plants, will upload some pics tomorrow!!
Waving at you, Pat!!!
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Cure-ious, I knew you would know all about Lasofoxifene! What would we do without you?
Can't wait to see the plants. I'll bet they've exploded!
Love from PatGMc
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I had my follow up appointment yesterday afternoon - blood work, ANP, Zometa, & Faslodex. Tasting the Faslodex this morning. Blah! Got my lab results and tumor markers went down. CA 15-3 went from 59 to 54. CA 27.29 went from 76.7 to 66.4. They are still keeping me on 125 mg of Ibrance.
Hope everyone is doing well today. Hugs to those who need them.
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Got my Tempus report today. And a call from MO office to reschedule a telephone visit for Thursday.
Ok, I do not understand most of this Tempus report. But looks like only actionable mutation is the BRCA2, which also showed up in the 2017 original liver tumor biopsy report (Foundation One that time). TMB is 5.3 (whatever that means) and Microsatellite instability is "stable". Biologically Relevant is CDKN1B and MAP3K1 (whatever that means). FDA approved Therapies are PARP inhibitors.
This is the DNA portion of the test, awaiting the RNA portion. But must be enough for my MO as she scheduled an appointment for Thursday to discuss.
Thoughts.....
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Thanks all. I will pop in here every now and then.
Candy...best wishes to you!
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candy - TMB measures the number of mutations within a tumor genome, and tumors which harbor more mutations have been shown to have a greater likelihood of response to immunotherapy. my report just said TMB is low.
This is what I found out today regarding your reading of 5.3
Low TMB defined as ≤5 mutations/Mb, intermediate TMB defined as >5 and ≤20/Mb, high TMB defined as >20 and ≤50 Mb, and very high TMB defined as >50 mutations/Mb.Let us know what your MO says. I like to learn.
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Jackie best of luck with new treatment (((hugs)))
Candy, as your MO called in early which means she has a plan already which is a good thing. RK translated well the report. Best wishes for Thursday.
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Thanks RK2020. I was told by my last MO that immunotherapy would not work for me because of my autoimmune issues--- Sjogrens and rheumatoid arthritis. So I am not thinking immunotherapy anyhow. Even though I have not had that discussion with my current MO to see her thoughts.
And PD-L1 was negative. So that is also about immunotherapy, right?
I am wondering about my ER flipping from strongly positive to now 0, negative. My PR is still positive. No ESR mutations mentioned. So will hormone therapy still work?? And nothing mentioned about PIK3CA, so no Piqray??
Sounds like maybe a PARP, but nothing else suggested on this report. So where does that leave me????? Does that mean I don't have many options????
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I am not a doctor and this is waaay above my head. But when I compare my testing from 2017 Foundation One to the Tempus testing now I found the BRCA, CDKN1B, and MAP3K1 are all on the original testing from 2017. Low TMB then and now. Microsatellite Instability stable now and then.
So the only change I see, and I am not a doctor, is the ER flipped from positive to negative. No new findings, that I see.
So progression? And why?
I will ask my MO, but nothing jumping out to me that BAM you have developed these mutations and that is why you are progressing.
Confusing.....
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I will meet with MO by phone tomorrow (Thursday). I have been writing down questions. Next scan is due mid June. Will ask if going to wait for next scan to see new measurements and then go with the plan we discuss tomorrow based on biopsy results.
Question for you all******* if flipped ER from positive to negative will we still treat with hormonals or with Fulvestrant? Or are those off the table?
Trying to think of my options--- no Piqray since no PIK3CA mutation, no immunotherapy with my TMB low and no PD-L1 mutation. Wondering about Fulvestrant. Or will I go to a PARP. Or Xeloda.
Thanks for the advise/thoughts.
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Candy, have you checked out this thread that I started? https://community.breastcancer.org/forum/8/topics/879255?page=1&post_creation=true
Bestbird posted some good information that can maybe help you. I hope you get answers soon.
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JACK5IE- I reviewed that Thread. Thanks for the link.
I still have the question if you flip from ER positive to negative do you still use the hormonals? Fulvestrant? A/A is part an AI, so use an AI with negative ER??? That is what I am unsure about.
Sounds like Xeloda or PARP can be used as a single agent.
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Candy, what are your TM s range? Are they elevating or stable? I am not familiar with liquid biopsy, what information we get from LB, does liquid biopsy confirm ER status + or -? This change in ER status happened only for your liver Mets? Have you considered local therapy?
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Candy - I was ER+ when I first had BC and MBC. Then when I progressed on Ibrance and Fasolodex after 3 months, another biopsy was taken. I had flipped to ER-.. so I had become basically Triple Negative. But because I had the BRCA2 mutation, I was able go onto a PARP inhibitor (Lynparza). If your MO chooses to go that route, it means no more hormone based therapy. It works at the DNA level and does not need feed off of hormone inhibitors. I don't think I tested positive for PDL1 which is for immunotherapy, however, my TMB is High. So I think that's what qualified me for immunotherapy. Unlike Pat, I thrived on the PARP inhibitor. I took it for nearly 2 years before I progressed. Now I am on carboplatin/gemcitabine/keytruda. I go in for scans on June 2 and find out if I need to continue on chemo or what my next treatment plan is. I hate this ride.
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Snow-drop- TM's are not accurate for me. Never have been. We check CA15.3 and they run 34-43. Was 39.4 when diagnosed with an 8 centimeter liver tumor. And 34.1 in March. So cannot rely on TM's to tell the story. Liquid biopsy does not check HR or HER2 status. Yes the HR/HER2 was checked on the tissue biopsy of the growing liver met. My MO asked the liver tumor board for recommendations and came back that the board said to "watch and wait". No recommendations for local therapies for the liver.
Hollyli1202- My ER flipped to negative, but PR still positive. So, I guess, I am ER- PR+ HER2-. So I wonder if we would treat the PR+ still with hormonals. Yes, I hate this ride too.
I will talk to my MO tomorrow and will post on here what she says.
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Candy thanks for the information, hopefully your MO comes with a good plan and keeps you in ibrance.
Ladies I just got a message from Jaycee. She is not doing great, her last pet found a brain tumor, she is going to have a brain mri tomorrow. Still she is on heavy duty steroids.. please keep her in your prayers.
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Snow-drop,
Thank you for letting us know about Jaycee. So concerned after her awful experience with the vaccination and now this. She will certainly be in my prayers. Hope she is able to post soon for herself and know that we all are pulling for her.
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Jaycee will be in my prayers. I didn't know she was having issues with the vaccine as well. I just read back a little. I too have had nerve pain and headaches since the vaccine. I also was worried it was a brain tumor. I had a brain MRI that came back clear thankfully. I feel so bad for Jaycee. Please tell her I'm sending her hugs too.
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Good luck tomorrow, Candy, Hopefully all your questions will be answered and a plan in place.
Thinking of JayCee and sending prayers.
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Hi all,
Candy - in your pocket for tomorrow's appt. I've been thinking about you and let's see what your MO has to say about the new ER- status. Yes, this ride sucks.
Snow-drop, thank you for letting us know about Jaycee.
Jaycee - you are in my prayers. We are surrounding you with love and prayers. I don't know much about brain tumors but do know some women on these boards that have been able to beat them back.
Hollyli1202, so good to hear from you. In your pocket for your 6/2 scans.
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Jaycee, I absolutely expect you to get rid of the brain mets and bounce back. I've had friends who had GammaKnife and others who had surgery + full-brain radiation. They did well, mostly complaining of the time period when they had to deal with the steroids, weaning off being the least pleasant.
We'll be here praying that all goes well for you and that you have great peace.
Love and a hug from PatGMc
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I hate to read about Jaycee's brain tumor. Jaycee--- Praying for you that they can knock it back. I too have read that some on here have had brain mets and are still going strong.
I just read on another Thread of JCSLibrarian having leptomenigeal cancer and has maybe 3-4 months. I don't remember if she was ever on Ibrance or posted here, but I have read her posts on other Threads before. She is one of us MBCers.
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Thinking of Jaycee too and sending healing energy to her. I also read about her vaccine effects, which are horrible. Snowdrop, thanks for letting us know.
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Candy, Good luck with your telehealth appointment today. I hope you get your questions answered and a workable plan. 🌻
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Just popping in, sorry to hear of those of you with progression. Praying that the next treatment gets your cancer under control.
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