Ibrance (Palbociclib)
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Cure ious , thank you from me too! We are really lucky to have you
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Thanks for the research news Cureious. I pray that we are on the verge of a great breakthrough.
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Ok...I am just laying it out there. I am depressed....usually stay really upbeat and positive. But after reading info, blog, etc. I am discouraged. Have tried to not put my head in the sand...I just want hope. I guess I thought when L/I fails then there are other options and I guess there are. Why does this cancer have to find its way around all of our med options. You all share so much knowledge and research and bless you for it. It took 3 mo to understand what was happening. First time with breast cancer if you made it 10 yrs you were home free. My first Onc when diagnosed with MBC was way over my head in understanding it all. New one much much better. Now I wonder is she keeping up with all the new info? It's mind boggling...all of it.0
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One more thing....pet scan this Friday...results the following Tues. it's scaniety time0
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Cure-ious. I read the article and it was very interesting to me. My F1 report shows I have the ESR1 alteration. The sample they used was from original BX of MBC in December 16. So, even though i had AI resistant tumors from before TX with IF, I have had response to my TX. Although, my January scan showed one more active I am considered stable. My MO did not change my TX yet. I think she's waiting for progression. I'm guessing it will be faslodex/Ibrance. Unless the CDK7 is available at that time. .
I go to see MO tomorrow. It is confusing to me why I have had a good response from IF. Even though I am resistant to A1. I do feel like my liver mets destroyed by y90 rather than IF. My lung and chest mets, however have about half the uptake on PET than they did from my first PET one year ago. I think I would need another BX before she decides what to change me to and maybe another FI report on new BX. It's so confusing.
Seems like the more I read the more I realize how smart my mets are. And that they don't follow the rules. UGH 😨💞
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Cureious, I wanted to add my thank you for your research, and add to it. I saw my MO yesterday, and she asked me if I was willing to take part in a trial once my cancer pregresses from I/L. Right now I am clear of any BC activity but she wants to be proactive and get me pre-tested. The trial is Novartis CBYL719X2402 (BYLieve) (IRB 11459) "A phase II, multicenter, open-label, two-cohort, noncomparative study to assess the efficacy and safety of alpelisib plus fulvestrant or letrozole in patients with PIK3CA mutant, hormone receptor (HR) positive, HER2- negative advanced breast cancer (aBC), who have progressed on or after CDK 4/6 inhibitor treatment" .
I put this out here so everyone can see that yes, they are still working on new meds for mutations. They are looking for specific DNA markers in the tumors and will use biopsy tissue they already have on file if it is still viable. It is only for someone with no previous treatment other than the I/L. I am considering it as it wouldn't hurt to get pre-tested to see if I would qualify. Something to put it my arsenal for the future.
Chris
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intolight. Wow that's very cool to have a proactive MO. I would be thrilled if my MO would bring it up instead of me. I don't have the PIK3CA alteration so i don't think that one would be good for me, also ERS1 I do have says I'm resistant to letrozole. But, someone on this thread might read your post and know that they might qualify for that study, too.
I think you're right about going ahead with the pre testing, then you'll be ready to jump right in when the time comes. I hear lots of ladies talk about how frustrating it is to have to do all that stuff after progression. Sounds like you have a smart MO. 💞
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Thanks Cure-ious for the amazing research and always sharing! Thanks Chris, I have the PIK3CA mutation too, thanks for the info and please keep us updated. I am wondering how/when US trials get to Canada... Have scans coming up for next week
, and plan to ask about this. Something else, me and my husband told our two older kids (10 and 13) about my diagnosis last week. I thought their worlds would implode but they seemed quite calm - of course now I think I maybe didn't convey the full gravity of the situation. But relieved they seem okay. I remain in disbelief at the turns my life has taken
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IntoLight- You do have a proactive MO!! And one hopes they might have some inside track on how people are doing in various trials, to be able to recommend one in particular. The power of our blogs are this collective information and opinions from the different MOs. You would want a PI3K inhibitor given that you know you have the mutation (and its one of the most common mutations in cancer). I think Alpelisib and Taselisib are the main new ones currently in trials.
There is a recent paper summarizing the early results from the trial your MO discussed- here is the abstract, in case that gives you some more info to consider. They have a good amount of responders overall, and the numbers are even higher and longer for the response in those with the PI3KCA mutation. The FGFR-amplified cancers did NOT respond to this regimen, so that is good to note- I guess those people would want to go on a trial for FGFR inhibition instead of this one.
Alpelisib's maximum-tolerated dose (MTD) in combination with letrozole was 300 mg/d. Common drug-related adverse events included hyperglycemia, nausea, fatigue, diarrhea and rash with dose-limiting toxicity occurring at 350 mg/d of alpelisib. The clinical benefit rate (lack of progression ≥6 months) was 35% (44% in patients with PIK3CA mutated and 20% in PIK3CA wild-type tumors; 95% CI [17%; 56%]), including five objective responses. Of eight patients remaining on treatment ≥12 months, six had tumors with a PIK3CA mutation. Among evaluable tumors, those with FGFR1/2 amplification and KRAS and TP53 mutations did not derive clinical benefit. Overexpression of FGFR1 in ER+/PIK3CA mutant breast cancer cells attenuated the response to alpelisib in vitro.
Grannax: I do not assume my MO keeps up to date with all the trails, she has too many patients and there are too many combos. However, we can research some of this stuff and provide the basis for questions, your MO can tell you whether some trial makes sense for you or not. It is overwhelming, and it took me a long time before I could even LOOK at the MBC literature, but there are not really that many trials that are applicable, and if you stay in the moment and try to not project ahead about a difficult unhappy life it helps. But yeah, when you are facing scans, its pretty much in your face, sorry about that!!
And for the ESR1 mutation, I think its not always possible to know if it is there whether it is the protein driving the cancer for the majority of the cells?, or the mutation exists in some cells but others hav wild type Inormal) ER perhaps? I don't know, but is a great question for the doc, and if you find out why they did not hesitate to put you on IF combo, let us know so we can better understand this stuff!
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Airlinegal, wishing you good luck with your scans. Let us know your results if you're up for it.
Lucia, so sorry you're dealing with these tough family issues. I think young minds just don't have the tools to cope with the enormity of these issues. If you're asymptomatic, they just see the same supermom they're used to. Sending prayers up your way.
Thanks as always, Cure-ious, for your insight and information.
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Jaylea, thanks for your kind words. We were strongly encouraged to tell our kids from the start, the rationale being that they would realize something is up and imagine "an even worst scenario." Not sure myself what that scenario could be. Anyway, it took me more than a year to get to this point, and it is a relief to not have to hide letters and screen calls from the cancer agency and keep them off my iPad but yes it sucks like nothing else.
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Cure-ious my appt is today and I'm already nervous about asking questions about my F1 report. I'm brave until it's the day I need to do it. Now I'm chicken. Ugh
Unfortunately, My F1 was not done until one year after my DX. So they put me on IF just by looking at my pathology report.
Yes, I think she will think me asking questions about what's next is just my anxiety talking. She'll probably say we don't need to talk about that yet. I don't think it's anxiety, more curiosity and preparation for me. I may just ask her her opinion about ESR1 and what it might mean for my second line of treatment. I'm not going to start spouting off what I've learned on these threads and some research. I don't want her to think that just because I've read a lot that I think I know as much as she does. But, because I have learned so much here, I will understand her answer. When i first looked at that 30 page report, it was all Greek to me.
I'm not in scaniety mode, April seems a long time from now and it's not even scheduled yet. I guess I'm just in reality mode. Most of the time it seems like the next step is progression. I see that as a probability for me on my next scan, especially now since I've become more educated on ESR1. I'm almost looking forward to changing to a better TX for me. And i think it's clear that shes not going to change to a better one until I progress. Reality for MBC and keeping a good relationship with MO is tricky.
Meanwhile, I get to see my grandchildren today. That's my happy place. 👦👧💞
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Grannax2 - if you don’t mind, can you (or someone else) point me to an explanation of an F1 report? I’m only a few weeks into this Mets thing and still learning. Thanks and good luck with your MO today.
Lauren
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Airlinegal I was clear for thirteen years or so I thought. I always had fear for each of those mammograms every six months that it would come back. I was blown away when I found out I had mets to bones, uterus, ovaries. In one way I was always leery of the ONC being so hopeful and encouraging saying it probably won't come back bc I felt he really didn't know. I read a statistic somewhere that said that cancer can lay dormant in your body etc. I'm grateful for the years I had without it or not being aware of it. And now on to warrior mode forever.
Lucia I'm sorry you had to tell your young children that news. They will probably talk with each other about it or a friend. Children are resilient and smart so it's better for us to give them facts than for them to scare themselves to death thinking about what it could be. I told my daughter when she was 15, wow she's 29 now. She acted like it was regular but sought consolation in her oldest sister quite a bit during that time.
Have a good day all.
Tanya
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Lauren. I started a thread called genomic alterations testing. It has a few posts on it. You can Google Foundation One and they have a website. I've read that some ladies actually spoke to someone there and it was very helpful. Also, Z had hers done through Caris.
Or ask your MO which one she uses.
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Thanks Grannax2 for the resources to learn more.
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Cure-ious Thanks for the update. Its very helpful.
Hobbes
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I did see my MO today and I was brave enough to ask questions.. I'm not sure I can write down the answers. She did say on progression she would do another BX. Maybe the cancer has mutated or changed. As far as ESR1 alteration, she said maybe it's Ibrance that's not working. Well, I can tell you that was not what I expected her to say. Then she said we have two more oral meds we could try, depending on a new BX results. She mentioned AfiNitor and Examestine. I haven't heard too many good things about those two. I'm even more confused than before i went. She did say my B 12 is low,. MY bad because I have to take shots because I don't absorb pills and I have not taken them as often as I should. I'm a little anemic too. Both of those could contribute to my fatigue.
Another day in the life of MBC.💞
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Airlinegal.....I'm sorry to know you're feeling so discouraged and down. Platitudes aren't going to help you so I won't go there. I'm normally very upbeat and chirpy and you could say almost a PollyAnna but at times my situation overwhelms me too. Sometimes it fills me with horror and so at those times I do put my head in the sand for a while to give myself a mental break. I really can't see anything bad about doing this. This is a horrible place to find ourselves. But then, when I feel ready, I pick myself up and get back on with living because I don't want to miss out on one single good moment and I intend to make a difference somehow and that's why I'm writing the blog. I HAVE to give my life a purpose otherwise the bleak times will start to outweigh the better times. This is my life now. I didn't want this to happen but it did so I have to live within the enormous limitations it has put on me and somehow find a way to still enjoy life, not just for my own sake but for the sake of my family. I also have at the back of my mind a little niggling worry about the possibility of Letrozole and Ibrance failing and I wonder what comes next and then I start wondering whether there will be sufficient new drugs to keep me going. When I get to that place, which I don't do very often at all and I only do it for a moment, I quickly call a halt to my musings because it's futile to worry and worrying takes away my joy. I hope I don't sound preachy. This is just my way of coping but if you have a scan coming up it's also understandable that your worry has increased. I never used to worry about scans but now that I'm more than a year in with the Ibrance/Letrozole treatment, I do. Good luck with the scan. I'll be thinking about you and praying.
I've just discovered a site called www.metavivor.org . I intend to do more research into this and add it into my blog. From a quick skim of what it's about, it's to raise awareness that out of all the funding that goes to breast cancer research, only 2% goes to MBC! 2%! This site is run by volunteers and raises awareness and funds, of which every cent goes to MBC research. I'm in Australia and I guess these are American figures but I intend to look into this and add my voice wherever I can. I need my experience to count for something and to do something to help those coming after us, if sufficient funding doesn't happen in our lifetime.
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Nice post Leapfrog. I heartily second your coping philosophy. I'm with you "this is my life now" - and I have a lot of Pollyanna in me. Except when I'm trying to fall asleep at night, or sometimes when I wake up. Worry increases with scans absolutely. I have one in a week ... it feels so important. Anyhow thank you for your thoughtful post and generous sharing.
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Leapfrog...beautifully expressed. Thank you.....0
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Leapfrog, thanks for your post... I know what you mean.. sometimes I call myself an ostrich, but it helps me when I need a moment.
Airlinegal ... hang in there, I know what you mean and have had those moments... take of yourself!
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Lucia42, we have to realize that kids these days have been exposed to commercials, 5Ks, fundraisers, etc, for breast cancer their whole lives. They probably know other moms who have it, or at least know someone who knows someone, etc.
I know here in the US, October is Breast Cancer Awareness Month (is it like that elsewhere?), and they are inundated with pink ribbons and survivor stories.
When I was growing up (I'm 56), "Cancer" was always whispered, like if you said the word out loud you'd be tempting fate. Nowadays, it's everywhere, and the kids just aren't as freaked out about it. As long as you tell your kids you're willing to answer any questions they may have, they'll keep coming to you.
I just got back from a week in Las Vegas (to celebrate my good scan results). Yesterday I met Julie Boyer, a woman who has a car in the off-road race, the Mint 400. It's a 400-mile race through the Nevada desert, and her team is one of very few female teams. They race a pink car, to raise money for breast cancer research. If you watch the video here, my name is on one of the stickers on her hood! So proud to be supporting this team. Go, Journee Racing!!!
All Woman Race Team Prepares For Mint 400
Oh, and while there, I did a little off-roading myself - my very first time on an ATV. A year ago, I would have told my husband to forget it - no way would I have tried one of those things. But here I am, 10 months into my diagnosis, and determined to have no regrets. He was thrilled I was willing to do it, and guess what - - I LOVED it!!! Welcome to MY "new normal"!
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Good morning everyone! Really good posts here. I am super stressed because once again my neutrophils are too low to begin my second cycle of Ibrance - up from .3 to .7 yesterday so I should be good to go next week, but I find this delay is making me 'weepy'. I too am more of a 'Pollyanna', so weepiness is causing me more distress than usual, so very glad these forums are here. Does it sound like I will start again on Ibrance in a week? If any of you had this delay until the Ibrance was in your system, how are things going so far?
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Hi Janky, sorry to hear about your low neutrophil count. Just wanted to let you know that it WILL get better! My count was super low after the first cycle at 0.4 then after 2 weeks went to 0.9. MO didn’t do the blood test again but had me start on my second cycle another few days after. 7 or 8 days into the cycle, my count was 1.9! I was ecstatic! (Laughed at myself for how little things make me happy these days). So, it does get better once your body adjust to the meds. Although I did reduce the dosage to 100mg and tried many regiments to help boost the count. The nurse laughs and saidi must be doing something right.
SO glad to see many of you continuing to enjoy lives, going on vacation and adjusting to the new normal. Thanks for sharing the research info and your success stories on the meds (sorry I don’t remember all your names). It gives me so much hope to live for many years and decades to come!
Lots of love and hugs to you all!
Thereishope4us
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Anyone have any thoughts about my recent post? I'd love to hear what you think about My MO visit yesterday.💞
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Grannax, as you said, it's another day in the life of Metastatic Breast Cancer. Sorry. I am assuming BX means biopsy ? It would be very good if you get another biopsy, because no point in doing Afinitor or any other treatments designed for estrogen-sensitive cancer if yours has mutated to not being estrogen sensitive. In any case that is what happened to me. Ibrance did not work; we did a biopsy and discovered it had veered to triple negative, so now I am on chemo (Halaven), which is quite tolerable. I went back to your previous post, because I felt like I hadn't quite followed your situation, alas, there were a lot of abbreviations that completely stumped me, and please forgive me, I'm so tired, I didn't have the courage to look them all up.
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Grannax, I do not know a lot about all of your specific questions, but I do know that there is new and constant research going on for targeted therapy. I talked with the research oncologist yesterday and she indicated that if the trial they are considering me for is not open when I am ready for it (I have no progression right now), there probably will be others. We are in the midst of a great pharmaceutical war fueled by greed, but if we look on the positive side, it means more hope and options for us.
So, I say enjoy your grandkids, and reach for the golden ring. When I was first dxd I "gave up" many things, but now I am taking many of them back. I love reading stories like Ciaci who is off-roading, and Nancy who is taking photography classes. It encourages me to jump back into the ring and keep on living. My mantra is "Celebrate the Joy!"
Chris
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Thought I'd join you lovely ladies. I'm about to start my second cycle of Ibrance (with a 3 day delay courtesy of the specialty pharmacy that required about a dozen calls from me and my onc to sort out the prescription refill).
A bit bummed about the blood counts - the neutrophils went from 3.75 to 2.05 to 1.0 to 1.29 (from week 0 to week 3) but decided to plummet to 0.94 after my week off. The RBC's have also continued their slow creep lower. Only the platelets seem to have made good use of their vacation and got back to normal range. Doctor OK'd me to start the new cycle anyway - I hope my body just needs a bit of time to figure itself out.
Other than the blood counts, I can't say I've felt any side effects that I can attribute to the Ibrance so far (knock on wood). I've been feeling less motivated to do work and I spend a lot of time browsing breast cancer sites instead of working, but I don't think that's necessarily Ibrance's fault
. Crossing my fingers that this puts the cancer into a long, deep sleep. 0 -
Piggy, welcome to the group although I am sorry you have to be here. Sounds like your body (and your pharmacy) is reacting like most of us. Give it time...
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