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Ibrance (Palbociclib)

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Comments

  • chicagoan
    chicagoan Member Posts: 1,079

    @brutersmom-Glad to hear that Fulvestrant has been a positive change for you.

    I'm still plugging along on Ibrance/Letrozole. Nothing new to report which is the cancer world is certainly good news!

  • aprilgirl1
    aprilgirl1 Member Posts: 803

    Hi All!

    @brutersmom I am so thankful that you feel better on fulvestrant! I have to say, I have less side effects on fulvestrant injections compared to the years I was on femara (gave me joint pain).

    @chicagoan Awesome news that you are still doing great on Ibrance and letrozole!

    Last time I posted on here I think I mentioned I have a spot lighting up on scans that my onc. kept wanting to "watch" as it was under 1 cm and not in a good place to biopsy (on my rt adrenal gland). After 3 scans showed the SUV getting brighter but the size not growing, she still wanted to "watch" it so I decided to get a second opinion at UCSF while I waited for my December scans (I had a trip to SF for a family wedding already on the calendar in November). Meanwhile, my Fred Hutchinson onc. also ordered a tempus blood biopsy which showed ZERO tumor mutations and no info - which I guess is good? Another reason I wanted the second opinion is that my onc. left on maternity leave 11/1 and will be back in February of 2025 so I have an interim onc. at Fred Hutchinson.

    UCSF appt was great (11/22/24). She advised switching me to Kisqali, depending on my 12/5/24 scan results. She agrees that it doesn't make sense to biopsy this spot. Fantastic write up for support for why she would switch me to Kisqali. Dr Michelle Melisko, UCSF - if anyone wants to get a second opinion or is in Calif!

    12/5 scans show the spot is now 1.2 cm, needs to be over 1 cm for Fred Hutch to consider it progression. Also, a hilar lymph node is starting to show SUV. Something is brewing! I just had a telemed with my interim onc. and she wants to switch me to Kisqali. The dilemma is should I stay on Fulvestrant or pivot to arimidex for the hormone treatment? UCSF doc recommended staying on Fulvestrant at first and see if the change from Ibrance to Kisqali makes a difference. Interim oncologist agrees. I think I should change the cdk 4/6 and can monitor side effects in lieu of changing both. Plus, I tolerate the injections really well.

    Otherwise, everything is good! I had a record year in selling homes. The late US Thanksgiving date has really thrown my holiday "planning" into a warp speed;) I feel good and am happy with this new plan.

    Hope everyone is doing well and appreciate all of you! This thread is my "home" as I've been on Ibrance/fulvestrant for 5 years. Hopefully you are ok if I still check in on the Ibrancers. I am beyond thankful for these medications.

  • chicagoan
    chicagoan Member Posts: 1,079

    Aprilgirl-Congrats on your successful year. Changing to Kisquali sounds interesting. I hope you will keep posting here and letting us know how it goes. Are you able to share the write-up about switching to Kisquali? I'd love to read it. Hope the Kisquali ends up zapping any possible progression.

  • chico
    chico Member Posts: 198

    Chicagoan & April so pleased to hear that you are both doing well & hopefully the change of meds will halt any progression April. After my 7.5 years on I/L the last 9 months for me have been on Orserdu only. I have a number of mutations including ESR1 so it’s a good choice for me and so easy. My blood work is perfect. I have scans on 6th January so we will see if it has worked.

    I enjoyed my Ibrance days and was very grateful to have had the opportunity to be on it.

    Good luck everyone and enjoy the holidays and let’s hope 2025 is kind to us all. xxx

  • chicagoan
    chicagoan Member Posts: 1,079

    Chico-Really glad to hear that Orserdu has been easy for you. Hope that you have great scans and can stay on it for a long time!

  • threetree
    threetree Member Posts: 1,825

    Malebreastcancer - Congratulations and thank you! Here's wishing you many, many more years. Hopefully those years too will be filled with our love and support. You say that words can't express your feelings, but I think you've done a pretty darn good job with the words. Beautifully written, and I could never write like that - you have a gift.

    Thank you too for being here for the rest of us and sharing your ongoing ups and downs, and love and support with us . We all continue to need each other!

  • brutersmom
    brutersmom Member Posts: 968

    Malebreastcancer congratulations on 20 years. That is great. I hope your journey continues for 20 more. Spending time trying to get ready for the holidays. Not many days left. Tomorrow starts the parties. This year they are all squeezed into 2 days LOL. After the new year comes my 2 year anniversary or my mets. Not sure how I feel about it. I do know that I somehow managed to schedule an oncology follow up for that day. Hope everyone has a great week.

  • sunshinedaydream
    sunshinedaydream Member Posts: 36

    Hi All,

    Popping in to say hello and wish everyone a wonderful holiday season.

    I started my 44th cycle of Ibrance last Friday and I had a PET on Monday that seems ok. There is a comment about skin thickening of bilateral axilla. Anyone have this comment before and can tell me if it means anything?


    Hope everyone is doing well :)

  • Rosebessie
    Rosebessie Member Posts: 100

    @brutersmom hallo there. I must say a big thank you for keeping this group going even in the face of silence. Sadly, being patients of a very demanding illness, sometimes the side effects are so overwhelming that simple text communication becomes a challenge. But, here I am after a long series of side effects that at times made me ask myself "What's the point 🥲🥲??" I've had continuous upset stomach which I put down to gut imbalance. So I tried to include Natural yoghurt and it was helping, but the sadly, I also discovered the primary protein in dairy casein causes joint pain and inflammation. Casein acts like an excitotoxin.  And then there's our arimidex. Joint and muscle pain are common side effects of Arimidex, affecting almost half of women taking it. Pain can occur in the hands, wrists, feet, ankles, knees, back, or other parts of the body And then there's the occasional Neupogen which sets off more terrible joint pain. I could barely walk for 2 full weeks!! I'm only just getting better.

    So, @brutersmom I'm seriously considering knee replacement early 2025 because my knee is not going to get better. It is old, has atthritis, and it's being made worse by all my medication. I'm trying to psych myself especially regarding recovery time and the pain i should expect, so any words about your experience are welcome 🙏.

  • Rosebessie
    Rosebessie Member Posts: 100

    And to all the other awesome, beautiful and strong members of this group, I hope you're all doing as well as can be. This journey is rough, very rough. I feel that every day.

    I'm sending you lots of love, hugs and God's blessings as we prepare for celebration of Christ's birthday next week. Yes, Christmas is here, once again, and we are here, still going strong.

  • brutersmom
    brutersmom Member Posts: 968

    @Rosebessie sorry you are having so much joint pain. Knee surgery has really helped. My onocologist recently switched me to Fulvesterant because of side effects. It has made a huge difference. I also know that my lingering left knee pain is gone. Fulvesterant blocks estrogen differently than aromatase inhibitors. Things that weren't healing right are finally getting there. After you have surgery, feel free to private message me with questions if you think I can help.

    Hope everyone is ready for the holidays. I got smart and have help coming tomorrow to clean the living room, powder room and Dining area and kitchen so I don't wear my self out next week. All I will have to do is vacuum up cat hair. Along with this I have been fighting a business issue that happened due to nothing in my control. I think it was an AI decision. I also found out my new oncologist is leaving. Maybe this is why my stomach has been acting up. I started on my ibrance cycle Monday and the stomach pain and neausea has been awful. Extra stress. Nothing over the counter has helped so I took a Zofran last night and feel better today. Hopefully I broke that cycle. Haven't had this since I started on Ibrance.

    Hope everyone has a nice holiday.

  • malebreastc
    malebreastc Member Posts: 100

    I recently learnt that for PIK3CA mutation a new drug Inavolisib has been approved. Anyone has more information. I have this mutation, so far I am on Ibrance plus Fulvestrant but just curious about this new drug

  • threetree
    threetree Member Posts: 1,825

    Malebreastcancer - I too read online yesterday about it being approved, but I don't know any details. I would imagine that if you google around, you can find more info. (I don't take Ibrance, and I don't have the mutation. I read this thread from time to time because I take the "sibling drug" Verzenio.) Good luck with finding out more, and maybe it can help you! Fingers crossed.

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