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Ibrance (Palbociclib)

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Comments

  • candy-678
    candy-678 Member Posts: 4,171
    edited October 2019

    I heard on 2 different news outlets that she died of "Breast Cancer". That is how they said it. Didn't go into specifics, but they did say "died of Breast Cancer".

  • tanya_djamila
    tanya_djamila Member Posts: 1,540
    edited October 2019

    I don’t know why BevJen they don’t like to just say died fromBreast cancer or Metastatic Breast Cancer Stage Iv- maybe that doesn’t sound like a pink ribbon with sparkles balloons and a new normal?

    Tanya

  • candy-678
    candy-678 Member Posts: 4,171
    edited October 2019

    Yeah Tayna. You are right. Kind of puts a damper on Pink October, and those commercials that show our "new normal" living with MBC.

  • lrsreyes
    lrsreyes Member Posts: 23
    edited October 2019

    I just received the good news that my TM has gone down to 124 from 266 ( stopped green tea extract supplement) . I am on my 2nd cycle of Ibrance ( also taking Faslodex, xgeva) . I was very busy doing yard work so the added activity helped since my aches are gone.


  • BevJen
    BevJen Member Posts: 2,341
    edited October 2019

    Irsreyes,

    wow, that's terrific news! I am finishing up my third cycle of Ibrance, and my TMs were dropping at the end of second cycle, but only down to 252 from the 300s -- interesting about the green tea extract supplement. Are you taking any other supplements now?


  • cure-ious
    cure-ious Member Posts: 2,891
    edited October 2019

    For those dealing with progression, here is a discussion from a few months back, some interesting points"

    1) about 1/3 of patients who progress on I-F were found to respond to Abemaciclib monotherapy for more than six months, whereas 1/3 crashed out right away and the remainder got up to six months. Presumably, these numbers would have been higher if combined with Faslodex, but they are a good indication that 1/3 of those progressing I-F are not resistant to CDK4,6 inhibition.

    2) AKT inhibitors are looking good in second or later lines, and unlike Alpelisib, patients response to that drug did not depend on having a PI3K mutation

    https://www.onclive.com/peer-exchange/advanced-bre...

    Here is a recent update on the trial with the AKT inhibitor, Capivasertib. Numbers are creeping towards showing an overall survival. They were surprised to find that patients benefitted even if they did not have a PI3K/mTOR mutation.

    https://www.medpagetoday.com/meetingcoverage/asco/...


  • Maire67
    Maire67 Member Posts: 418
    edited October 2019

    Pat, Nicole & Holly I'm sorry to hear about your progression but excited to hear about PARP possibilities for you. Sending lots of prayers and hugs too all of you. I still check in to see how all you lovely dancers and Alumni are doing. Best wishes to you all . Doing my own dance as I transfer to Kadcyla in Dec. Pat , I'm so glad you found Sean. He sounds like a gem. Maire

  • nkb
    nkb Member Posts: 1,561
    edited October 2019

    cure-ious- as I recall animalcrackers was in a trial with an AKT inhibitor. I don’t know which one. More arsenal

  • thereishope4us
    thereishope4us Member Posts: 65
    edited October 2019

    Sorry to hear about the news of progressions among our dear friends here. It is the dreaded fear that we all have.

    On a brighter note, I met with a friend who has been on the stage 4 journey for over 6 years. Her tumor in the lymph nodes progressed to over 6cm. She was on Ibrance and Faslodex for about 4 years. She then had the large tumor removed and switched to letrozole. She has been NED since for the past 1.5 years on letrozole alone. She exercises regularly and attributes her health to Chinese medicine, immune boosting supplements, essential oil and a strong mind. She is doing fantastic, full of energy and positive spirit. Meeting with her was truly an inspiration for me and thought I would pass on that positive vibes to you all as well.

    My scan is in a few weeks and anxiety is building. A persistent headache that I have been experiencing doesn’t help either. However, I am hoping that the strength of the body and mind will help me conquer whatever is ahead.

    Thanking of you all.

  • novagirl
    novagirl Member Posts: 82
    edited October 2019

    Pat, Nicole and Holly-I’m so sorry Ibrance has failed you. I know it’s frightening but I’m so encouraged with all of the options others are discussing for next options.

    Tanya, that is wonderful you represented MBC on GMA, awesome!

    I was at a BCRF event in NYC and gave an interview for E News on MBC and how we need more research dollars. It didn’t make the cut but they raised over $250,000 to be donated to BCRF and stressed the importance of research for US.

    Thereishope4us, good luck with your scan

  • PatgMc
    PatgMc Member Posts: 1,312
    edited October 2019

    Friends, may I make a point here? I don't want to hurt anyone's feelings but I'd like to say I don't feel that Ibrance failed me or that I failed Ibrance. I do thank you for your kind words but I am truly not sad. Yes, it's okay to be sad but that's not what I'm feeling.

    In 1994, I was treated with Adriamyacin, Cytoxin and 5-FU and was free of BC until 2002 when I was diagnosed with very early stage BC in the other breast and tried the AIs (each one!) until I decided I'd had enough....probably in 2003. No more BC until 2012 when I was first metastatic and treated with Carboplatin and Taxol, followed by about 18 months (?) of Femara until I'd once again had enough! No drugs until 2016 when I presented with the widespread bone mets, starting Ibrance and Arimidex on October 2. Three years doesn't feel like failure. It feels like the link to the next good drug for me.

    As I look back on these treatments, I'm thankful for each one and the part it played in me having this great life for 25 years after a diagnosis I thought would cause me to die young at 44. Here I am 7 and a half years in with MBC and I'm about to begin a treatment I've long thought would be perfect for me. It was approved a few years back for Ovarian Cancer and I kept asking my oncologist about it, so my time comes to move on from Ibrance and, ta-dah! Lynparza has the FDA stamp of approval. Getting pre-approved by insurance took less than a day! Being BRCA1+, once such a bummer, becomes a good way to be today....Go figure!

    To each of you who have moved on to other drugs or may one day find Ibrance is no longer your best choice, something else will be there. Tell your oncologist you'd like to know his/her plan for that day so you can maintain your equilibrium should that time come. (You can always adjust if a blockbuster drug presents itself.)

    I'm filled with so much hope for each of us. When I was first diagnosed there wasn't much that distinguished one BC from another and most everyone got the same treatment. We're entering an age when treatments will be tweaked for reasons now just being dreamed about by researchers.

    We are MBC pioneers and nothing will ever be the same. Believe it!! I'm going to be 70 years old on the 23rd, much too old to die young! God is still in the healing business!



  • maureenb
    maureenb Member Posts: 47
    edited October 2019

    Simone 80- MO said 5 years with Femara and maybe 1 year with Ibrance. I guess he is thinking that's the best case scenario if nothing reappears during that 5 years.

  • BevJen
    BevJen Member Posts: 2,341
    edited October 2019

    Pat,

    I have to say that I find your posts so uplifting, as I'm sure others do too. You have such a great perspective on this journey that we are all on, and you convey your thoughts so well about this whole BC journey. Thank you for making my day -- and the day of so many others! I also loved your closing -- that God is still in the healing business. Thank you!

  • lrsreyes
    lrsreyes Member Posts: 23
    edited October 2019

    BevGen


    The only supplement I am taking now is Turmeric .I was pain free even with 10 years of Femara.

  • Moomala
    Moomala Member Posts: 397
    edited October 2019

    That's a wonderful post Pat! I'm having a two month interval scan Tuesday because it's looking as though I may be headed to my next treatment just five months after dx and beginning Ibrance. But one thing I'm being told here over and over by my support group friends here is that when you find the right drug and you get a few stable scans under your belt it really feels much better. I think for me, and maybe for Nicole although I hate speaking for someone else, we are are so new at this and don't have as much experience. I tend towards being super anxious but wow your post really gave me a picture of another way to think about this. I was treated with CAF in 1995 so I know exactly what you mean about being grateful that that treatment worked for me for so many years! I'm 63 now and I do feel gratitude the life I have had. I haven't quite found gratitude just yet for this turn of events - in fact I'm still highly pissed off that the sucker came back - but your uplifting post is really very very helpful and I thank you for that!

  • nicolerod
    nicolerod Member Posts: 2,877
    edited October 2019

    Pat thats great you feel that way. you are very uplifting (like bev said :) ) ... like you said you did get 3 years. I on the other hand got 6 months...I kind of see that as it failed for me. Am I not angry at Ibrance...no, I am very disappointed and scared of the next thing failing as well..and I am scared that it made my cancer grow more like I have heard other women that it failed in 7 months say that their doctor said about it...yes. Everyones body is different some people find things that work a long time, some don't...it is, what it is.

    I think it's wonderful that you are so positive and I think I would probably be more like you if I got 3 years out of a treatment...but failing something so fast and having to find other options is a bit scary and like I said disappointing..to me, anyway.

    I believe God has numbered my days before I was even born and I believe God is sovereign and I love the Lord and pray for his mercy and covering in this battle and most of all that He leads me to the right doctors and right medication to subdue this cancer and grant me more time with my husband and our son and his wife. I also pray for everyone battling this disease. :) More than anything I am grateful for the friends I have made here, the positive messages they send me and advice they give...and that I can be "real" with them :) That is a blessing.

  • sandibeach57
    sandibeach57 Member Posts: 1,387
    edited October 2019

    Hi to those folks who are progressing on their antihormonal plus targeted therapy, like CK4,6 Ibrance.

    Are you guys sure the cause is Ibrance and not your antihormonal, maybe having the common ESRI mutation?

    I would be interested in what your MO's say. Especially those who have run thru all their hormonals what would be next.

    I realize this combo is slow to see results, but usually the mets are stable to regression..not progression. So I would be frightened, too, if progression is noted after just a few months.

  • nicolerod
    nicolerod Member Posts: 2,877
    edited October 2019

    I had re-gression at the first 3 month scan. All my 3 tumors in liver shrunk and the 2 in bone were almost completely resolved. That was Aug 2019 now last week...all three in liver have grown and there is now a 4th one and I know the one in the sacrum has too they didn't see the hip on the MRI because it was of the abdomen so I will find out tomorrow results of PET if there are more somewhere else... I have no idea if it was the Ibrance or Letrozole or the Faslodex that failed..but something in there did... and I have no idea how the doctor will even know that???

  • Rosie24
    Rosie24 Member Posts: 1,026
    edited October 2019

    PatgMc, That’s so great that you were handed off to Sean the pharmacist. People like him may not even realize how much they do to make someone’s day. Your new best friend is a keeper! Also glad you are ready to move on to your next treatment. I hope it kicks a** for you!

    Nicole, I’ll be thinking of you tomorrow as you meet with with your MO to discuss what’s next. I can sense your panic and I hope your MO can give you some reassurance with a plan. Also I hope that he/she gives you a chance to ask all your questions and he/she explains the rationale behind the recommended treatment. I do appreciate your sharing here. Sending my best vibes for you

  • Moomala
    Moomala Member Posts: 397
    edited October 2019

    I had mixed results at my first three-month scan. Lung tumor shrunk. Bone mets showed progression, but also numerous sclerotic lesions. So I am very curious to see what my next scans on Tuesday (a month early) show. I am having a lot of pain these days, however I have vertebral compression fractures that are still bothersome and some tendinitis and arthritis in my hip. I've been wondering a lot about the letrozole, and wonder if my MO will change me to Ibrance/Faslodex, Verzenio/Faslodex or Xeloda. Or something else. Or maybe I'm stable now. Good grief waiting for scans and results stinks. I feel a lot better about all this though. Most of the people in my support group here are on third and fourth treatments and doing well on what they're on currently. Seems like quite a few of them had to go through several treatments before landing on something that worked longer term. I'm a little bit envious of the woman who has been on I/L for four years. I wish.

    Nicole sometimes I wonder about these scans too though. On my three-month scan I had brand new widespread sternum and rib mets that were sclerotic in just three months. The radiologist said that these sclerotic lesions were either a result of treatment response OR they were just old lesions that were not seen on the first scan I had three months earlier. Ok what?
    I'm just as curious to see what your MO recommends this week. My memory is thinking you said that you were on Ibrance letrozole and faslodex all at once? So yes how will the MO know which drug failed?

  • Anewbreath
    Anewbreath Member Posts: 122
    edited October 2019

    Pat, “We are MBC pioneers and nothing will ever be the same.” Happy 70th Bday to you🎂My journey began at 34 and I don’t know of any other way to believe I’ll be around to celebrate my 70th birthday but through God’s business of healing 🙏 If I could “love” your entry...That is my hope for us!! It’s so easy to get down and focus on the negative even when our treatment plans are working. Setbacks can become unbearable at best. But, when I spend time looking at how much knowledge & stride has been made(even in the 12 years since my early stage diagnosis) in treatment options and supplements for us. Some of the advances have shown real success in helping us live longer lives with this disease. This allows me to feel thankful and hopeful again when my mind starts to spend to much time focusing on the negative. Pat, I needed that reminder this morning. I’m praying for all who have upcoming treatment changes. Please continue to share your journey for us all to absorb and learn from. Hugs!!

  • BevJen
    BevJen Member Posts: 2,341
    edited October 2019

    Moomala,

    I think it's interesting about what you said regarding sclerotic lesions on your 3 month scan. Interestingly, prior to going on Ibrance and faslodex, I had scans in May. At the same time I switched oncologists. The new oncologist said to me -- have you been on a different treatment that I don't know about? I said no. She asked me because on that set of scans (an abdominal MRI, a PET/CT, and a nuclear bone scan) the radiologist reading the scans said that there were sclerotic lesions in my bones. Huh? This was the first time that was ever mentioned. Prior to that point, my scans read "arthritis" in those same spots. And if the spots had resolved prior to the scans (thus sclerotic) that was weird, since I was on letrozole for the 13 years prior. Who knows with this stuff????

  • nicolerod
    nicolerod Member Posts: 2,877
    edited October 2019

    Thank you Rosie :) Moomala...my new MO I have only been with since Sept 1st so she wasn't the one that had me on I/L&Fasoldex it was my MO before her in NY. I am wondering the SAME THING!! How will they if at all even know which failed?

    My other concern is I don't really think removing 1 of those to see if the other 2 alone will work is a great idea right now because I think we need to knock this back first.....

  • intolight
    intolight Member Posts: 2,376
    edited October 2019

    I awoke today with my granddaughter's cold, and I am supposed to fly to MO in the morning to meet my new grandson. ARGHHH! Thankfully so far it is just feeling crappy and a sore throat so I am not coughing and sneezing which is good for the plane.It is difficult to get enough energy to pack. I am also on the last few days of my Ibrance cycle so I am tempted to stop the Ibrance a little early so I feel better and get well faster. Anyone else done this? My MO told me to go ahead and delay starting the next cycle two days until I return but that was completing this cycle first. I will have enough leftover pills to start a new cycle on time if I stop now without having to worry about the pharmacy issues. Don't know why I didn't think of this when we discussed the timing last month in her office. I know some of you take a couple of weeks off to travel but I have never done this. Since I am doing so well, I probably could without problems, but I am also far enough along that I fear any change in regimen. I guess I am looking for someone to encourage me here...

    Pat, Nicole, and Holly, I am following you and praying the next medicine works wonders for you. I always considered myself smart but all of this medical information just passes me by. I know my mind is no longer sharp but still it bothers me that I don't understand it all. I am on my 44th cycle now and fear every scan. This is no way to live, but at least we are alive! My daughter-in-law was an oncology nurse before switching to labor and delivery so perhaps she has some words of wisdom while I am there this week. She has always been hesitant to discuss my cancer in the past, but I do love her dearly.

    I am praying for all of the new scans and changes that are occurring this week. You all keep me going!


  • jaycee49
    jaycee49 Member Posts: 1,264
    edited October 2019

    Chris, my husband and I are leaving to visit DS and DIL on the 10th returning on the 23rd. My current Ibrance ends this Thurs. I will be taking an extra week off for this trip. I did that when we went to their wedding three years ago on our last trip. I really don't see a problem doing that. Quality of life is REALLY important to me. I am not going to sacrifice how well I feel on this trip for a week of Ibrance. We don't take vacations very often (looks like every three years) so I am totally up for this. Chris, you also need to worry about giving something to the new grand baby. Remember, people take extra weeks off all the time for ANC levels, etc. Time to throw caution to the wind just this once. How's that for encouragement?

  • maureenb
    maureenb Member Posts: 47
    edited October 2019

    Has anyone had lung inflammation since taking Ibrance? Just read about the FDA warning that was posted on the home page of Breastcancer.org. Anyone have problems like this?

  • simone60
    simone60 Member Posts: 952
    edited October 2019

    Hi Intolight,

    I took an extra 3 days off my last cycle. I was going on vacation and I did not want to be tired.


  • Rosie24
    Rosie24 Member Posts: 1,026
    edited October 2019

    Jaycee and Intolight, DH and I have a trip coming up too. I was kind of worried about how to be consistent with time of day since we’re going on an overnight flight to Europe and will be 6 hours ahead of our US time. MO said, “don’t spend one more second thinking about that, just pick a time for your meds when you get there and it’ll be fine.” I guess I over thought that. I’ll also be a few days late for my labs and again she said, do it when you’re back, no big deal if you change your start date. So overall I guess my trying to stick to routines is not going to happen. I was trying to figure out if it really doesn’t matter, or if she’s seeing it as the quality of life aspect and wanting me just to enjoy myself. Maybe both. I hope all goes well with your visits (and you can avoid the worst of those colds, Into Light). I do think travel and family visits are good for our souls. I’m hoping my energy level holds up though

  • Rosie24
    Rosie24 Member Posts: 1,026
    edited October 2019

    Simone, another instance of being flexible. Thank you!

  • ciaci
    ciaci Member Posts: 315
    edited October 2019

    Rosie, when I went to Italy and Greece in May, I just kept my phone on US time by keeping it in Airplane mode. I have my alarm set for 8AM every day to take my Ibrance/letrozole, and it reminded me at 8AM Eastern time every day, regardless of where we were (some days it was a 6-hour difference, some days 7, as we were on a cruise, going from island to island - too stressful to keep track!). Didn't miss a beat.

    That being said, I know a lot of women who didn't take it at all while on vacation, and had no issues with that!

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