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Ibrance (Palbociclib)

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Comments

  • chicagoan
    chicagoan Member Posts: 1,084
    edited April 2023

    Congrats 42young! Thanks for checking in. Nice to know you are still stable.

    I saw my oncologist yesterday after scans last week. Grateful to still be stable now after 6 1/2 years.

    Hang in there Brutersmom. Hope that sewing will take your mind off things until a new plan is in place.

  • 42young
    42young Member Posts: 126
    edited April 2023

    Thank you Chicagoan. Congrats on your 6.5 years stable as well! Hope the combo will keep us stable more years.


  • brutersmom
    brutersmom Member Posts: 969
    edited April 2023

    Congrats Chicagoin on 6.5 years.

    I received a call this morning asking me to come in for an evaluation this afternoon. Met with one of the Oncologist I saw in the hospital and I really liked here. She does gynecological cancer not breast. She reviewed the symptoms and said she believed what happened is I had a testosterone surge. Similar to what happens to some men when they use drugs for body building. She was going to send me for some test to see where I was with the cancer. My mets were to the pleura of my lungs. She reviewed my previous test then check me out and after listening to my lungs said they were totally clear and after only 3 months she did not expect that. She then decided I could wait until after my former Oncologist returns. She decided to stop letrozole for 3 more weeks and prescribed effexor. She want to get that to a therapeutic level before starting the letrozole again. We also talked about different dosing strategies but ended with let's wait until my former Oncologist returns because he is even smarter then I am. It is so relieving to finally get to a solution and a plan.

  • brutersmom
    brutersmom Member Posts: 969
    edited April 2023

    Has anyone ever taken letrozole every other day with Ibrance? This was discussed today because of how got two weeks ago from the drug.

  • spookiesmom
    spookiesmom Member Posts: 8,178
    edited April 2023

    I can’t tolerate letrazol. So I was just taking the ibrance alone. When I ‘fessed up to MO, he said that wasn’t approved, and wouldn’t work. He said I could do falosadex injections with the ibrance, I haven’t, for a few reasons. Just my 2 cents

  • brutersmom
    brutersmom Member Posts: 969
    edited April 2023

    Spookiesmom I hear where you are coming from. I credit the letrozole with stopping the fluid in my lung and the 2 together with my total improvement. This time my only side effect is the black hole. Not something I can live with. I just know I want to do everything I can to keep the fluid from returning and having the cancer spread especially since it is in my pulmonary lymphatic system, pleura and lung. Not being able to breath is worse. I am hoping the effexor works.

  • believe60
    believe60 Member Posts: 86
    edited April 2023

    Hi all, I don’t post a lot but I do follow along and learn a lot. I am 6 cycles into ibrance (and I get fulvestrant) and I just had my second set of scans. This is my first line since diagnosis last September. My January scans were “grossly stable”. This time bone scans show pretty good amount of improvement. Some lesions resolved, many shrinking, no new spots. CT scan however shows progression in liver. Every lesion has increased in size. Does this mean the end of ibrance for me? Just wondering if others have experienced the same. I see my MO this coming week. Thank you so much

  • gigil
    gigil Member Posts: 919
    edited April 2023

    I have been on Ibrance for 4 months. I have had low ANC to the point I had to wait for my levels to rise before taking my next cycle. I have had my dose lowered to 75 mg. I am also on Fulvesterant. My question is, have any of you had your CA15-3 initially go down some and then back up again? I am wondering if this has to do with my stop and start beginning with the Ibrance. My ANC was 1100 today after two weeks, so I think I am tolerating the new dose better. My CA 15-3 started out at 555 and went down to 285 for two months, and now it is 422. I am trying not to worry, because I know my oncologist is going to order a CT with contrast to see what is going in there. Just wondering if any of you have seen this kind of pattern with their cancer marker. I surely do seem to feel better - except for the occasional ache or pain. Thanks in advance for any experience you can share.

  • aprilgirl1
    aprilgirl1 Member Posts: 803

    Hi all, I have been out of town for 10 days and with the website revision have been out of touch!

    Believe60 - when do you see your oncologist? I am sorry you have mixed results. My non-medical opinion is that it depends on the size increase in the liver mets. No new mets showing up is a good thing. Let us know what your MO has to say.

    Gigil- my 15-3 has never elevated, even when first dx as stage IV. So I don't know the answer to your question. For sure I would ask your oncologist/oncology team. It's good that your anc is higher, which definitely means you are tolerating the reduced dose of Ibrance better.

    As far as the new "site" is concerned, I am happy that we can add a "care" click and some other options!

  • anntop
    anntop Member Posts: 38

    Hi, everyone. I've been off this website for quite a while but look forward to catching up with everyone. I hope the new format works well.

  • sunshine99
    sunshine99 Member Posts: 2,723

    I don't know if I like the "Dislike" button. We're here to support each other. I also don't see the name of the thread with in the main group.

  • keris113
    keris113 Member Posts: 45

    Hi everyone, I am new to posting on here and fairly new to breast cancer as well. Was diagnosed in January initially stage III and did 4 rounds of AC chemo. I did alright with it until a few weeks ago when I ended up in the ER due to low RBC. Was diagnosed with liver mets in March and will be starting Ibrance 125 mg today. I have been struggling a lot emotionally and mentally, that is probably an understatement and am nervous about starting the Ibrance and its side effects and hopeful that it will work. I am also taking Arimidex. Hoping to get some support here and connect with others. Thanks in advance.

  • chicagoan
    chicagoan Member Posts: 1,084

    Welcome Keris113! I think you will find the Ibrance side effects a piece of cake compared to AC chemo. For most people, the side effects for Ibrance are worst during the first 3 months as your body adjusts. Common side effects are fatigue, dry skin/eyes, mouth sores and low white blood cell counts. I have been on Ibrance for over 6 1/2 years and now lead a happy, normal life. I wish you well with this. Let us know how you are doing.

  • ciaci
    ciaci Member Posts: 315

    Hi, Keris113, I'm no longer on Ibrance (slight progression after 5 years switched me to Verzenio), but I check in here often.

    I always say that if I knew at the beginning what I know now, I would have danced around the kitchen when I took my first Ibrance capsule (back then, they were capsules, and came in a yellow "Chemotherapy" bag - scary stuff), instead of crying on the floor. I was terrified, and could barely swallow it around my sobs. But then, I got lucky. Minor side effects, easily tolerated. Great results - fully NED by six months. And a full 5-year run on this incredible drug. So consider this an amazing possibility, not something to be feared. And dance!!

  • tanya_djamila
    tanya_djamila Member Posts: 1,542

    Keri’s I’ve been on ibrance about 6 years. I did change from initial dose 125 to 100 pretty quickly. They usually check your blood counts after being on for the first two weeks.
    I also found out when I feel the best usually a few days into the first dose after the week off up to a week and a half and then I feel the fatigue more. Try to do the things you love and rest when you need to.
    take care

    Tanya

  • brutersmom
    brutersmom Member Posts: 969

    Keris113 Welcome. I started on Ibrance and letrozole 4 months ago. My biggest side effect from Ibrance is fatigue and low blood counts. The Dr. will monitor those and adjust your dose and schedule as needed. I started on 125mg and last month they dropped it to 100 mg. I have more issues from the letrozole then Ibrance. I find letrozole upsets my stomache if I take it with food and it has cause some serious behavior issues. Good luck I hope you find it as easy to tolerate as many of us do.

  • brutersmom
    brutersmom Member Posts: 969

    Today I saw my regular oncologist. I really like him. We talked about my issues with aromatase inhibitors. After a month break, and starting effexor 3 weeks ago, I am going to start letrozole again. Ibrance and letrozole have been working really well for me but my body goes wacko without estrogen. He does have another drug to add if effexor is not enough. I hate meds but I don't want the cancer to get worse which it will without iletrozole. I am 90% estrogen positive. My doc is so good with everything. He answers all my questions. Some came as the result of videos and pod casts that I have found in the metastatic stage IV groups. He seems very knowledgeable and is very positive. He said he has had 2 patients where nothing he tried resolved the lack of estrogen issue. He is hoping I am not the 3rd because it really will make things much harder on me. Fingers crossed everything works going forward.

  • aprilgirl1
    aprilgirl1 Member Posts: 803

    Brutersmom, I am so happy to hear that you saw your regular oncologist and he sounds like a great doctor! Not only smart but a good listener and intuitive with his patients. It is so important that we have doctors that understand specifically how these meds work and how we can combat the side effects if possible. It also sounds like you have learned a lot from breastcancer.org videos and podcasts. I have learned so much from breastcancer.org and really am thankful for the discussion board and the various topic threads.

    The recent upgrades are ok, a little challenging for me as it seems like I can't log in on my phone but I can from my computer. I tend to be "on the go" with my work so haven't posted as much since the latest upgrade. It's easier for me to check in on my phone. I attend the Tuesday Stage IV zoom as it is the only one late enough for me since I live on the west coast. I really enjoy the people I have met who also join that zoom (it is at 5:30pm PST). Last night Melissa was our moderator and I believe she started this website. I can't thank her enough for starting this as it has really helped me. Connecting with others and learning from others have made a huge impact in a good way on this very unwelcome journey.

    I am doing fine. last time I posted I mentioned I came back from my trip to Panama (the country) and a few days in Key West Fla and I came down with covid - first time for me to have covid. It was a very light case, which I am thankful for. I went in to get my blood work and fulvestrant about 5 days after testing negative (covid did not delay my shot appt,thankfully I tested negative during my week off of Ibrance). Interestingly my WBC and neutrophils were the highest they have been since I started Ibrance/Fulvestrant in 11/2019. I was starting to feel like I had some sort of immunity to covid as I have been exposed so many times these past 3 years but had not contracted it yet. My husband who I was traveling with before I tested positive and sharing a bed with did not contract Covid and has managed to not come down with it yet. I am relieved that I got it and got over it pretty easily (from what I can tell!).

    Hope everyone is doing as good as we can be. Checking in on DivineMrsM, KBL, GigiL, Ciaci, Chico, MaleBC, Spookiesmom, Chicagoan, SF-Cakes, RK2020, Sunshine99, Cowgal (who I sometimes get to talk to on the zoom!), Believe60 (great to see you on zoom last night!) Candy678 and all of you who have been or are on Ibrance. I can't remember all your names but you are all in my heart. Some of you post on other threads and I can catch up on how you are doing but I hope you are all doing as good as can be.

    Anyone starting Ibrance or on Ibrance, don't hesitate to post and say hello!

  • rk2020
    rk2020 Member Posts: 697

    I find myself reading on BCO less often now because for some reason a few days after the upgrade, I stopped receiving emails telling me of a new post. Sometimes, I found it easier to catch up by reading those emails on my phone while standing in line or while my husband was driving somewhere. Other than that, I’m getting used to the format and appreciate that there seem to be more posts per page and I was able to modify my signature better then in previous versions.

    I’m still taking the PROTAC inhibitor trial drug. I’ve only had one tumor marker test since starting but the numbers continue to climb higher then ever. Either it’s tumor flare or cancer continues to grow. Since I do not have an ESR1 mutation, I fear the worst but hope for the best. I was having considerable pain in so many areas - my active and sclerotic mets are all over- and we decided to try a low dose of steroid to see if some of my pain was inflammatory. It’s working great! I’m in SO much less pain. I’m having some issues sleeping but I’m getting more used to it and it’s not too bad. I take 10-20 mg melatonin at night. I do have a weird arm spasm thing that has also been somewhat relieved by the steroid. And lastly, my chin went numb about a week and a half ago. It has now spread to my lower left jaw bone and front jaw bone and teeth in these areas. It gets worse at night and can give me a tension headache. So strange. Sigh. I had a brain MRI. It came back clear except for 2 low intensity skull lesions. My next CT and bone scans are at the beginning of June. By June 6 I will know if the trial drug has failed or not. I know this is the Ibrance thread but I update here thinking that others may be interested in pipeline drugs being developed. It’s always good to know what may be available after Ibrance.

    My only son and his gf are visiting this week and I’m loving it. I’ve got a smile on my face from ear to ear.

  • malebreastc
    malebreastc Member Posts: 100

    Hi Aprilgirl and everyone

    Just wanted to say hello, so far I seem to be going fine. my MO ordered chest X-ray and abdomen sonogram, it came clear, also the blood work normal, hope this is sufficient to know that Ibrance and Fulvestrant still works ? and am on my 18th cycle…

  • brutersmom
    brutersmom Member Posts: 969

    Aprilgirl1, I feel the same way about the site. I miss the email notifications. I also on my phone hate the fact that to find my favorites I have to scroll all the way to the bottom to get the link. Sometimes I forget to check in.

  • gigil
    gigil Member Posts: 919

    aprilgirl1 good to hear from you. After a week of scanxiety I had my PET scan today. I am on my second round of a Ibrance 75, after 3 months on 100 mg,where my ANC dropped so low I had to interrupt treatment. I am on Fulvesterant as well. Scans came back markedly improved. I even got a WOW response from my doctor. I am feeling grateful today. I just thought I would share my good news. I am celebrating with pizza tonight after eating mostly protein yesterday 😊

  • divinemrsm
    divinemrsm Member Posts: 6,621

    gigil, what terrific news! So happy for you! ❤️

  • aprilgirl1
    aprilgirl1 Member Posts: 803

    RK2020, so happy that your son and his GF are visiting you this week, great reason to smile from ear to ear. Good to hear that your pain is less and that your brain scan was clear. I join you in your hope that increased tumor markers are due to cell die off and nothing more. I am eternally grateful for you and all who are participating in clinical trials. Enjoy the rest of your son's visit, June 6th will be here soon enough.

    MaleBC - Great to hear that you are doing well and that the tests your onc ordered were clear. I would ask why the onc. doesn't order a petscan or ctscan but it's possible that you don't need those or the Onc. is spacing out the big scans with these in between. It is worth a discussion but clear or stable is great news!

    Gigil - I am celebrating with you and also had pizza;) Great news!

    Brutersmom - hoping we get used to the changes….

    Divine - great to see you:)

  • rk2020
    rk2020 Member Posts: 697

    malebreastc- I can’t believe you are already on cycle 18! It seems like just yesterday that you started. That’s awesome. I wish you many more cycles.

    Gigl - Fantastic news! Thanks for sharing. 🍕

    Brutersmom - It’s so important to have a doctor who truly supports us. I love my research oncologist but once my current drug fails I’ve got to find a different MO.

    Aprilgirl - thanks for doing a roll call. It’s so nice to hear from Ibrance dancers. ❤️ My husband tested negative for Covid this morning. It seems like every time my son flies down he brings some kind of bug. 😞

  • divinemrsm
    divinemrsm Member Posts: 6,621
    edited May 2023

    Does anyone use an iPad to access the forum? It’s pretty much all I use to browse the internet and when the former upgrade was installed, I lost the ability to remain logged into the site. With the original forum, I was able to check a box and remain logged in for two weeks at a time. But once things changed, I had to log in every time I visited. Even if I clicked off the site for a couple seconds and remembered something else I wanted to do on the forum, I had to do the rigamarole of logging in. I hoped this would change with latest upgrade, but so far, no, even tho I reported the matter.

    I appreciate that the site runs faster now and that there are more posts per page. I miss the small detail of knowing where people are located if they chose to share that info under their avatar, and many did. It felt more personal. It still seems like there is less posting of members altho part of that could be due to current nice weather keeping us busier with other things. My apologizes for the thread interruption but just wanted to throw that info out there.

  • brutersmom
    brutersmom Member Posts: 969
    edited May 2023

    Gugil that is great news.

  • rk2020
    rk2020 Member Posts: 697

    divine - I use only my iPad or iPhone to log in. I can’t say how long it’s keeping me logged in but I logged in yesterday and just picked up where I left off today without logging in again. Immediately after the upgrade, it seemed like I had to sign in a lot but not so this week. 🤷‍♀️

  • rk2020
    rk2020 Member Posts: 697

    and I use Safari as my browser.

  • divinemrsm
    divinemrsm Member Posts: 6,621

    Thanks, rk. I also use Safari. Wonder why my experience differs from yours.

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