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Ibrance (Palbociclib)

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Comments

  • JoynerL
    JoynerL Member Posts: 1,392
    edited February 2018

    Have FUN, Yaelle!

    Does anyone know anything about this drug in trials?

    Oraxol Phase III Trial


  • Yaelle
    Yaelle Member Posts: 38
    edited February 2018

    Thank you JoynerL.

    I didn't know the drug, nor the trial, but found it in the list of clinical trials. It seems that the trials are conducted in latin america countries, results are due in november 2019. https://clinicaltrials.gov/ct2/show/NCT02594371

    We are lucky, with all these new drugs coming, and with Ibrance already, there's so much hope for metastic patients. I feel we are blessed to live now !


  • jaycee49
    jaycee49 Member Posts: 1,264
    edited February 2018

    OK, I won't torture you like my MO's office tortured me. My Pet/CT results show stable again. No new anything and this radiologist reader used the word "healed" when describing my shoulder bone met. How cool is that. I had to drag it out of them, though. I called this AM (frenchhorn's results got me going) and I got the new person on the phone. I knew there was a new person but I don't recognize her voice yet. She said, "oh, yeah, come down and pick up a copy of the results." It's only a 15 minute drive so I went. Unfortunately, this is NOT policy. The doctor has to see and ok giving a report to a patient. I was not leaving without it. She sent a message to my MO's assistant to get it ok'd so I could have it. When I saw him hand her papers, I knew I was home free. She would not let me have a report that showed progression. So, my new PFS is 25 months. I am now counting the months I took off for various reasons. (two weeks to change dose, one extra week off for my son's wedding, two whole months off for UTI's=3 months) Add that to the 22 cycles I've taken it and you get 25 months. I mean the months I took off were still PFS, right? Welcome to all the newbies. Don't worry about UTI's. I have them all the time, even before cancer and cancer meds. The 22 cycles I have been on Ibrance, except for cycle one, have been on 75 mg. Blood work fine and CA 27-29 still low. ANC 1.01 but I squeak in to keep going. I think I remember someone (a new person?) saying their MO wouldn't let them start a new cycle at 1100. Isn't that the same as 1.1? I may be mistaken but I think it is. Why not continue? Newbies (and their doctors) need to know that Ibrance takes a few months to start working. Give it some time.

  • Jaylea
    Jaylea Member Posts: 440
    edited February 2018

    MW Laura, Frenchhorn, and Jaycee, a big Woo-freaking-Hoo for good news!

    Gracie, a couple of suggestions for mouthsores. Ask doctor for 'magic mouthwash', he/she will know what it is. It is nasty but has a numbing effect that provides immediate relief. I only bring it out when I need the big guns. Otherwise I swish a few times a day with salt water. Others have said baking soda works, too. Then of course the obvious, stay away from hot liquids and acidic foods when they flare up. Like so many other SE's, these too seem to calm down after a few months.

    Yaelle, your trip to France with your sister sounds divine. Enjoy a croissant for us!

  • JoynerL
    JoynerL Member Posts: 1,392
    edited February 2018

    And WINE.

  • JoynerL
    JoynerL Member Posts: 1,392
    edited February 2018

    And thanks, Yaelle!

  • midwest_laura
    midwest_laura Member Posts: 114
    edited February 2018

    I second the opinion on the Magic Mouthwash.  I swish with Biotene for daily use and only resort to MM in those extreme situations.  

    Yaelle: have a glass of wine for me too!  

  • PatgMc
    PatgMc Member Posts: 1,312
    edited February 2018

    Gracie, I was amazed at the quick relief from mouth sores I got from Stonyfield Greek Yogurt. Many have used the Magic Swish prescription but I'm not a fan of the taste. I know those sores can make you miserable and I pray you get some relief quickly.

    Wahoo on the good scans, folks! I love it every time I read about them! A Facebook friend who had progressed on Ibrance reported today that she is back to NEAD on Kisqali! I'm telling you, we're all going to live to be really, really old!

  • intolight
    intolight Member Posts: 2,422
    edited February 2018

    Jaycee, so happy for you. Yahoo!

    Pat, thank you for the information about Kisqali. It is so good to read positive news and receive hope today.

    Onward!!!

  • janky
    janky Member Posts: 478
    edited February 2018

    So a couple of questions: 1. alcohol (wine, beer etc) what do you all consider as a moderate amount? My MO says a glass of wine/beer periodically, but he didn't clarify :) daily, weekly?? I have read it is a cause of breast cancer :( 2. How does one know when a trial will be done? Do we ask the doctor running it? I am in a trial on the 'standard of care' side, should I ask the Oncologist? Jaycee49 - I am able to get a copy of my test results, scans etc. just by asking my general doctor, and I get copies of them all.

  • cure-ious
    cure-ious Member Posts: 2,926
    edited February 2018

    Thanks, Joyner! I always like hearing about new drugs-

    Here is one to get (maybe) excited about: it causes tumor infiltrating lymphocytes (TILs) to seek out tumors.

    In pre-clinical studies, it works synergistically with checkpoint immunotherapies, which disable tumor immune defenses.

    It just made headlines for the priciest buyout in pharma history, but the current clinical trials for this new drug are for standard cancers that already respond to immunotherapy:

    lung cancer, melanoma, kidney cancer, triple-negative breast cancer.

    We just have to keep waiting for immunotherapies for ER-positive MBC....

    Here is the link:

    https://www.xconomy.com/new-york/2018/02/14/bristo...


  • 50sgirl
    50sgirl Member Posts: 2,071
    edited February 2018

    I am sad to report that Aurora passed away today. Her daughter sent me the news in a PM and asked that I post to Aurora's favorite threads. I will miss Aurora, but I know she is at peace and free from pain.

    Hugs and prayers from, Lynne


  • cling
    cling Member Posts: 263
    edited February 2018

    Lynne, thanks for letting us know about Aurora’s passing. She is free now! We will miss her

  • Frenchhorn654
    Frenchhorn654 Member Posts: 46
    edited February 2018

    Jaycee - Yeah! Thanks for sharing....Wish I was closer and we could go celebrate together! It does feel like torture, I did not realize how much worry and tension I was holding in my body and my attitude. My mind feels free to think about other things for awhile.

    Joyner.. great article.

    I did not know Aurora, but my heart goes out to her family and friends.

    All newbies welcome, hang in there and virtual hugs to all.

  • iwrite
    iwrite Member Posts: 746
    edited February 2018

    Lynne- Thank you for letting us know about Aurora. Her contributions here were valuable to so many. Fly free

  • janky
    janky Member Posts: 478
    edited February 2018

    I recently joined this site and am learning lots, thank you! I was diagnosed November 2016, left side mastectomy in December 2016, then chemo February - April 2017, followed by 30 radiation treatments May - June 27, 2017. Through a strange sequence of pneumonia which warranted a scan, we discovered a small lesion on my right iliac (hip), biopsied January 2018, and here I am :( I am wondering about Radiation on the hip? I am in a Radiation Trial but am on the Standard side, meaning I am being studied while using my MO's protocol of Femara and now my first cycle of Palbociclib, February 2018. Both my MO and the Trial RO have said to wait till I have pain or the tumor grows, before radiation will be used - thoughts, especially if you have/had similar scenario? I will be having ct and bone contrast scans every 3 months... I posted this on another thread in case anyone thinks they are seeing double ;)

  • micmel
    micmel Member Posts: 10,057
    edited February 2018

    Geeze....Really don't know what to say other than. No more pain. She was a fighter like us all. Laughed when something was funny., but always was there to offer any of her knowledge and support. None of this cancer stuff is fair. Please may her sister know that she was loved and willl be missed by so many. Thanks for sharing Lynne. You too are very special. Gentle hugs of sadness. ~M~

  • Gumdoctor
    Gumdoctor Member Posts: 618
    edited February 2018

    Good Morning All,

    Since I am so new here, I did not have the honor of getting to know Aurora.

    I am very sad to hear of her passing but I believe it is a blessing to have an end to suffering when the time comes. It is also important to learn everything we can from Aurora's journey from her posts here, so we can grow her legacy and make it count for much more than just another sad BC statistic.

    The more we learn from her and from each other, the more we can help others on this shared MBC journey. I will have a moment of silence for Aurora today then will spend 30 min reading as many of her posts as possible.

    I hope and pray her family receives some heavenly strength and peace today.


    Warmly,

    V

  • JoynerL
    JoynerL Member Posts: 1,392
    edited February 2018

    V, this is a lovely idea, and I want to do the same. Can someone give me Aurora's user name? Just Aurora doesn't seem to be she.

  • jaycee49
    jaycee49 Member Posts: 1,264
    edited February 2018

    Auroaya

  • JoynerL
    JoynerL Member Posts: 1,392
    edited February 2018

    Thanks, Janet.

  • jensgotthis
    jensgotthis Member Posts: 673
    edited February 2018

    Happy for your good news, Jaycee!

    Thanks, Cureious, for news of that trial. I’m pretty excited about anything to do with TILs.

    Thanks Lynne for letting us know about Aurora. The cancer is just relentless. We’ll miss her as I know her family will.

    Hang in there Gracie. My TMs went up the first 4 cycles in Ibrance and it turned out to be a flare. And I remember aching so badly in my hip for the first 6 months. And that was after radiation, which didn’t give me pain relief but the healing that was taking place (which was significant since my hip was close to fracture) did it’s job. Praying for you friend.

    Welcome new friends, I’m glad we all have wachother

  • EV11
    EV11 Member Posts: 86
    edited February 2018

    Bighome--and others....

    I started cycle 36 this week (the last 33 have been at 75 mg, by the way, for anyone concerned with lowering their dose....) and if my scan in April suggests no progression I am going to talk to my onc about a 3 month break from Ibrance (late May will be the end of 3 full years on Ibrance and letrozole). I wonder about the effect of continuous CDK4/6 inhibition on the evolutionary drive of the cancer (to mutate to become resistant to this type of treatment) and think a break might be good, in that it will relieve some of the pressure on the cells to find a way around that action. The anti-estrogen effects of letrozole **should** hold the cancer at bay for a few months...

    Or, I'm also thinking about asking her to stop this type of treatment completely for 6-9 months as a more dramatic removal of this particular pressure and try capecitabine or something else, and then return to this (or maybe abemaciclib) after a break... I'm still pondering what else I would ask for instead. I'm thinking of making an appointment with an onc at our cancer center (a colleague of my onc's) who specializes in immunotherapy and get his opinion of how to best position myself fo a possible immunotherapy trial.

    Or maybe one or both of them will convince me to just continue on this regimen and get the most out of it before making any changes (although I really do wonder about the possible benefits of a break....)

    Well-- that's more than enough of my musings-- what I really want to say is that I support the idea of a break after a significant exposure on this treatment, and believe that a body would do well to have a chance to recover bone marrow and blood cell reserve.

  • Hobbes12
    Hobbes12 Member Posts: 88
    edited February 2018

    Mica1 I understand your Ibrance fatigue, but I am not aware of any evidence to date that PD1 inhibitors are effective in ER+ MBC, just a so-so response in triple negative MBC. Having done 22 months on Xeloda before switching to Ibrance, I would take Ibrance over Xeloda any day. Hand foot syndrome left me almost unable to walk for several weeks. If your liver mets are growing, I can see switching but not if you are stable.

    Jo

  • EV11
    EV11 Member Posts: 86
    edited February 2018

    Hi, Hobbes--

    I appreciate your input-- this forum is a great site for exchanging ideas and engaging in "conversations"...

    I concur that there is little evidence that PD-1/PD-L1 medications are going to be effective in most ER+ MBC at this point in time...I'm considering a solid-tumor TIL trial that is in the process of being designed at the cancer center where I am treated-- I spoke with one of the would-be PIs and there are characteristics of my lobular MBC and information in my genomic testing and the fact that I have a paraneoplastic immune syndrome that seems promising for this type of treatment...however, the proposed trial (still being finalized) will most likely require 1 line of chemo as inclusion criteria; that knowledge, and knowing another trial that I am interested in that uses atezolizumab for lobular MBC also requires a line of chemo, makes me open to chemo as a treatment approach sooner than would typically be indicated in the usual treatment sequence for ER+ MBC.

    My consideration of interrupting Ibrance before I have progression comes from a series of conversations I have had with a couple of cancer researchers studying the development of endocrine resistance. These interactions have prompted my thinking about how cells circumvent the action of the treatment. Some of these researchers describe a model of thinking that comes in part from biologists studying bacteria that develop resistance to antibiotics...scientists figure the "sweet spot" where a successful treatment has been used for a significant length of time but then be interrupted before the cells learn how to get around the action of the antibiotics, that treatment can be stopped, switched to a different drug that uses a completely different mechanism, and then have the first drug be re-started in a few months. Doing this preserves each class of drug for future use, often multiple times, and the overall length of time that any one class of drug is effective can be significantly prolonged. It's using the drugs repeatedly in sequence for shorter periods of time that ultimately results in longer response times overall. While the scientists caution that bacteria and cancer cells are vastly different, they say the rationale is sound and transferrable across disciplines. It's just very different from the way cancer treatment has been conceptualized and implemented up until now.

    It's considering that framework that makes me open to interrupting Ibrance before I have run it to it's natural end (progression). I would do so in the hope (albeit unproven) that I could return to it after giving the cancer a break from trying to find a way to circumvent CDK4/6 inhibition. It's not something that I have considered lightly, especially since I have almost no side effects from Ibrance and if I was assured that it would be effective for another 3 years (no resistance would develop) I would gladly stay on it without any complaint. However, knowing that the medications that await me in the future have more serious and undesirable side effects, I am willing to use one of those medications for a shorter periods of time than I would be on it if I were using the meds until progression, and have the opportunity to break up the periods of time that I have to endure the less desirable side effects with easily tolerated medications like Ibrance. If this is a sound approach, then in the end, when I add up all the blocks of time I am on one medication it should equal (or exceed) the length go time I would have been on it if I used it straight through to progression. I am hoping to actually lengthen the total time by giving the cancer more therapeutic challenges to try to figure out; by keeping them metabolically confused I hope to prolong the effectiveness of each type of medication. This is exactly what happens when antibiotics are rotated for patients requiring chronic antibiotic therapy--

    So it's simply a different way of thinking about how to sequence treatments, and when to conclude that it's time to change treatment approaches, even in the absence of progression. The current accepted thinking that you run a medication until obvious progression is reasonable; but the scientists in me wonders if there might not be a different (equally as good or better) approach...and this may be one. It's definitely worth considering if not trying. Especially when you consider that the CDK6 action of Ibrance has significant effect on the bone marrow, and we don't really know that long-term implications of that. Perhaps giving the bone marrow a chance to recover more normal function for a few months will reserve it's overall health and enable the marrow reserve to be strong and capable of tolerating the harsher medications yet to come. There's just so much that is still unknown about these medications and their long-term impact....

    Obviously it's only something to consider if my next scans continue to show stable bone and peritoneal mets (I don't have liver mets, or any other mets that show up on scans-- but that's another rant about the inadequacies of current imaging techniques to detect lobular BC)...if there's progression then I'll have a completely different situation to wrap my head around.

    I'm looking forward to continuing this conversation, if anyone has thoughts to offer....


  • Jaylea
    Jaylea Member Posts: 440
    edited February 2018

    Jensgothis, good to see you, how are you doing? I think I remember you struggling with fatigue, as I was commiserating with you.

    Mica, you present a really interesting narrative. I especially like the concept of "keeping the cancer metabolically confused." I look forward to other comments on this.

    Something good came from this craptastic diagnosis. I was chosen to participate in a clinical trial for an on-line guided meditation program. I committed to an 8 week course of 10-20 minutes a day with a stress-relieving app. I'm on day two, just learning the basics of breathing, mindfulness, etc. It's actually quite soothing.

    Happy long weekend to all the Yanks, happy weekend to our cousins around the world.

  • Gumdoctor
    Gumdoctor Member Posts: 618
    edited February 2018

    Hello All,

    I just finished reading Aurora's most recent posts and here are the top 3 things I learned about her:

    - She reached out to express concern for others before herself.

    - She had an unshakable faith in God.

    - She believed God sustained her through her entire cancer journey.

    What a wonderfully inspiring legacy she left us as we honor her and her MBC journey. We can continue to honor her journey through ours. I have to believe Aurora is in Heaven, whole, healthy, happy and looking down lovingly on us now.

    Thank you Aurora for showing us how to do this well.


    Warmly,

    V

  • GracieM2007
    GracieM2007 Member Posts: 1,255
    edited February 2018

    Jen, thank you for letting me know...it’s just so darned scary!!!

  • cure-ious
    cure-ious Member Posts: 2,926
    edited February 2018

    Mica- It is a very interesting idea, to drop out of a successful drug regimen before the cancer figures out how to grow around (and becomes more aggressive in the process) and hope to be able to return to it after a break with some kind of completely unrelated treatment. If we had other drug types that didn't come with bad SEs, and which were very likely to work, I'd join you. But its not even clear what would be good to take secondline after Ibrance-Femara. Faslodex-Abemaciclib would be OK, but its staying the course even longer for hormonals, and there will be no going back to any of them after resistance develops. Science says go for an mTOR/PI3K inhibitor, that would be the most common useful drug, but we don't have one- Aromasin-Affinitor SEs suck, and the 2nd gen PI3Ks are so far mostly unknown and in clinical trial. And I believe immunotherapy will be useful in ER-positive BC, but have to find the right combination of drugs. Abemaciclib- Keytruda might be helpful, but we are waiting for the numbers on that trial. And ideally, we'd like to have immunotherapy sooner, rather than later, so for me its all a reason to keep on trucking with something that is working, and hope it becomes clearer what the best next step would be.

    One idea would be to go with Weisenthal testing and see what drugs you latest biopsy tumor cells would respond to- at least then you could be guided with the hope that you are jumping onto something else effective. It'd be great to be able to keep the Ibrance-Femara in your hip-pocket for harder days down the line, but what if you leave something working and go onto something that doesn't work, and then the cancer is progressing sooner than it would have and you don't know if what you end up with is going to be ER-driven or not?

  • cchilders79
    cchilders79 Member Posts: 38
    edited February 2018

    Hi everyone! I just caught up.

    - Sorry to hear about aurora’s passing I did not know her but, I send warm comfort to her friends and family.

    -mouth sores I have had them I use campho phenique if they are really bad. Salt water is also good.

    As for me I met with my oncologist on Wednesday and she told me that my scans were great the bones are healing in my back I asked if the tumors are shrinking she said no but the bone is healing from where the tumors were attacking. My blood work was iffy wbc (were 2.8) and rbc (3.87) were ehhh okay they were going into low territory, iron is still terrible for me (anemia), but my neutrophils were good 1.94 so I will start on round five on Monday. I am on 100 mg that is where we started and it has helped. We also discussed my left shoulder pain she prescribed me muscle relaxers because she’s thinks it is my muscles being bunched up and to use a a heating pad. She said if it get so bad in a week to let her know so they can do an mri. We discussed the swelling under my right armpit and she told me it’s lymphedema which is discouraging. I am also now I am on a sleeping medication because I get bad insomnia because of menopause. But my state insurance have a ql on all sleep meds and requires prior auth for them they denied me prior auth so I have an expedited appeal to get the rest of the meds (I have 14/30). So yeah. Still on the gabapentin even though I am maxed out (did that last month) she is doing a wait and see.

    Other than that I am on baby watch my sister was due today with baby no 4 and this is the first time she will go over her due date but can’t wait to see her soon in a few months and spend time with my niece and nephews and my sister. Well that is it for now have a lovely weekend!


    Chani

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