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Ibrance (Palbociclib)

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Comments

  • @cowgal - sorry for the delayed response! I haven’t heard anything about anyone being taken off Ibrance after so long while being NEAD. I believe Ibrance was FDA approved in 2015, so, I am not sure how many people have been on it that long without needing to change treatment. This thread is so quiet, I often feel like I’m one of the last people on this. Are you still taking it? I started my 65th cycle earlier this month.

    @chicagoan - did you figure out what was going on with your hip and are you still on Ibrance?

    My fatty liver turned out to be just that. No cirrhosis, so that was good news. The doctor told me to lose 5% of my body weight, which I did but gained back. It hasn’t been mentioned on any scans since though.

    Hope everyone is feeling well.

  • chicagoan
    chicagoan Posts: 1,547

    @sunshinedaydream Hello! This thread is really quiet now. I am still on Ibrance-my 126th cycle-but in late 2025, I was switched from Letrozole to Orserdu. I did have progression in 2025. My hip problem was a combination of arthritis and cancer. I had my hip replaced a year ago and now I feel fine. My cancer was not showing up on CT or Bone scans. Now I have PET scans and the most recent showed that my treatment combo is working to shrink my active tumors.

    Interesting about your liver. My weight has been up about 20 pounds since I started treatment so I can understand the difficulty in keeping it off. I sometimes lose 5 lbs but then I gain it back. Good to know you don't have cirrhosis.

    I feel well and hope that you do too.

  • I am just starting Imbrance. If you could comment how you deal with side effects that would be great.

  • moderators
    moderators Posts: 10,677

    Hi @joanieford, and welcome to the community! Until you get some responses from other members, you may find our https://www.breastcancer.org/treatment/targeted-therapy/ibrance article helpful as you get started. We hope others in the group here will share their side effect experiences and how they coped with them.

    Best,

    The Mods

  • aimeeeee
    aimeeeee Posts: 24
    edited September 30

    @joanieford welcome to the club! Don’t resign yourself to side efffects. I have none; in fact I’ve never felt better or stronger. I’ve been on Ibrance (along with Itovebi, and monthly injections- Faslodex, Lupron, Xgeva), so I have been in med induced menopause for two years this November. I’m 41. Manage what is actually within your control - healthful diet, consistent movement, metabolic health, glucose stability, sleep and stress. Have faith in science, r&d and the meds. They work, and the scientists are doing amazing work creating new therapies, so we need to keep our bodies as strong as possible to handle whatever may come. Enjoy every day of your life. Wishing you all the best. Keep us posted.

  • brutersmom
    brutersmom Posts: 1,231

    @joanieford. I have had very few side effects from Ibrance. My biggest issue in the beginning was fatigue and low neutrophils. Fatigue was managed with a lower dose. My oncologist recently switched me to alternative dosing 5 days on 2 off to manage the neutrophils issue. If you get mouth sores stop using toothpaste with Sodium lauryl sulfate that will help. In the beginning i had a lot of heartburn and nausea. Turned out that was from the letrozole not ibrance. Discover that when i had knee replacement surgery and was off ibrance for 2 months. The heartburn and nausea continued. I had a sever neuropsychological response to letrozole so now I am on Fulvestrant shots and rarely have stomach issues. One thing i can't do is over eat or very spicy foods. For me it has been a fairly easy drug to tolerate.

  • Thank you for responding and welcoming me to the club. I don’t know my way around this community yet. I started the Fulvesterant Shots yesterday, without incident. I have Trigeminal Neuralgia, and I think I am bothered by that mostly. My Ibrance and ITOVEBI came today, I will start those tomorrow. Then we will see how it goes. I feel supported here. Thank you for that, Aimeeee and Bruersmom.

  • aimeeeee
    aimeeeee Posts: 24
    edited October 1

    @joanieford - with itovebi, it’s best if you eat a low carb diet. The doctors won’t tell you this because they don’t want to disrupt your life too much, but Itovebi can interfere with insulin signaling and raise blood sugar, so keeping carbs low helps keep glucose more stable and insulin demand lower, and makes the drug more effective. If you need help figuring this out, message me, and I’ll be happy to walk you through it. Also if you experience range of motion issues in your hips with the fulvestrant shots, red light & near infrared light therapy will help tremendously. I have been the guinea pig, so you don’t have to! Just message me!

  • moderators
    moderators Posts: 10,677

    Hi @joanieford,

    We're just checking in to see how you're doing since starting your treatment - how are you feeling? Any side effects to note? How can we help?

    —The Mods

  • Thank you for checking. I am doing okay. I have a new oncologist, that is good. I have mouth sores From the itovebi . I don’t know how to treat them other than salt water rinse.

  • moderators
    moderators Posts: 10,677

    Hi @joanieford! We're glad to hear you have a new oncologist team. They may be able to recommend something to help with your mouth sores. For now, you may find these resources helpful:

    https://www.breastcancer.org/treatment-side-effects/mouth-and-throat-sores/magic-mouthwash

    https://www.breastcancer.org/treatment-side-effects/mouth-and-throat-sores

    https://www.breastcancer.org/managing-life/diet-nutrition/healthy-eating-during-treatment/eating-with-side-effects/sore-mouth

    We hope you find some relief soon!

    The Mods

  • brutersmom
    brutersmom Posts: 1,231

    @joanieford sorry you are having mouth sores. Please let you care team know. A few things my dentist recommended. Do not use a tooth paste with sodium laurel sulfate. This is found in crest and Colgate. I use Sensodine. It has really made a difference. Second they suggested candy with xylitol and xclear nasal rinse with xylitol as a mouth rinse. Xylitol help prevent bacteria growth in the mouth and helps with mouth sore during cancer treatments. I can't eat candy or chew gum with xylitol. Some people get intestinal irritation. I am one of them. Hope this helps a little. Mouth sores are no fun.

  • brutersmom
    brutersmom Posts: 1,231

    I have been on Ibrance almost 4 years. This past year I have had increased shortness of breath and cough. Scans have remained clear. Last weeks scans again came back no evidence of cancer or anything else, blood clots inflamation, etc. Only slight scarring from radiation in 2015. I have had pulmonary testing, heart tests and one small issue was found in a heart test but for now I am told it is age related and not the cause of my issue. I take 5 meds. A bp med I have been on for 5 years. Cardiologist says that SOB is not a know side effect and does not think it is the cause. Inhaler and singulair to help with the shorness of breath, and cancer meds fulvesterant 2 years and ibrance 4 years. The cardiologist recommended a break from ibrancd to see is it is the cause. I am a tad nervous about stopping any cancer meds but I need to breath. I am still on my first line and want to go as long as I can but I beginning to feel worn out. It is getting harder and harder to continue with my exercise program which I enjoy. I sat down and made a list of random thoughts and ovsevations and it seems like since I switched to 5 days on 2 off I have developed more issues. Thanks for reading this far. I am wondering if I should ask for a new guardant360 or similiar test and if that come back basically unchanged then take a break from Ibrance for a couple of months and see if things improve?

  • chicagoan
    chicagoan Posts: 1,547

    I found that eating plain Greek yogurt was helpful to heal mouth sores.

  • chicagoan
    chicagoan Posts: 1,547

    @brutersmom That sounds like a good plan. I've been off Ibrance for 3 weeks since I am having cataract surgery today and I realize I feel much less exhausted than usual. I am still on Orserdu but am nervous being off of Ibrance. I probably still need to wait a week to 10 days before resuming so that my body can fight off any infections.

  • brutersmom
    brutersmom Posts: 1,231

    @chicagoan 3 years ago when I had knee replacement surgery I was off for a little over 2 months. Cancer remained unchanged. I did stay on letrozole. I can't say I felt better because before the knee surgery walking was extremely painful and afterward recovery was hard. By the time the knee surgery was beginning to improve I started Ibrance again. Good luck with the cataract surgery. I had mine before cancer and I was back to work the next day with vision. It was an easy surgery.

  • @chicagoan I need cataract surgery too, and will need to go off my CDK4 inhibitor. my MO said, "it will be perfectly fine!"

  • chicagoan
    chicagoan Posts: 1,547

    @tougholdcrow Good luck with your surgery. I had mine last Thursday and plan to restart Ibrance tomorrow. My instructions said I could resume wearing eye make-up (which I plan to hold off on for a few more weeks) so I figure the risk of infection can't be that high! I have been off for 3 weeks to build up my white blood cells.