Ibrance (Palbociclib)

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  • cling
    cling Member Posts: 263
    edited August 2017

    l am not on ibrance but have been reading it since Hope created this thread. Glad to see many reached 20+ cycles. I was on Faslodex over 3 years, and hoped to add ibrance, but instead was put on Halaven.

    I am going on a vacation and Halaven gives me daily diarrhea. After reading long term ibrance users getting an extended break or "vacation hold", I got an idea to ask Onc for a break on my chemo schedule. I got it!! So I don't have to take chemo the day before my vacation! Thanks for the experiences shared by BCO sisters.

  • JoynerL
    JoynerL Member Posts: 1,392
    edited August 2017

    Thanks so much for this article, Cure-ious! All are encouraging.

  • nkb
    nkb Member Posts: 1,561
    edited August 2017

    Hi. I'm newly on faslodex and ibrance and I'm wondering if people who have been on the same dose for several cycles notice about the same ANC response every cycle or does it jump all over the place? MY ANC was 1600 and I started the 100 mg of ibrance. at 2 weeks the lab on 100 mg was an ANC of 700, I continued the last week, was off for a week and then did a lab and my ANC was 600- too low to restart. I took another week off and it is now 1000- and I am cleared to restart 100 mg of ibrance. My worry is that if I went from 1600 down to 700 in two weeks- what will happen with me starting at 1000? Or do they know that 2 weeks of 100 mg ibrance leaves me at 700 and that is consistent?

    thanks!

  • Hilldegunn
    Hilldegunn Member Posts: 25
    edited August 2017

    Just started my treatment. I see women report that "mets are gone" Does this happen in the bone? I have ZERO bone pain other than my degenerative changes in my left hip. Only mets I have are in the ribs spine pelvis and skull. The bone scan states it was extensive.My Zometa infusion will be monthly. Can anyone share their side effects? I was in perfect health prior to this dx. (Except for my old lady hip pain that resolves with naprosyn)

  • hopefulgirl
    hopefulgirl Member Posts: 60
    edited August 2017

    is anyone here HER2-positive and being treated with ibrance and letrozole? I am triple positive and doing well on ibrance and letrozole and wondering how many else are in the same boat

  • PatgMc
    PatgMc Member Posts: 1,312
    edited August 2017

    Hildegunn, after 3 Ibrance cycles there was a remarkable response to the widespread mets in my bones and an internal mammary node. After 9 cycles there was almost no SUV uptake showing on the PET scan! I also see an orthopedic oncologist. He said the places on my bones still show up on his x-rays but they look like healed lesions. That is often the way it is with bone mets. I do have some friends who had theirs disappear and some here have had that happen. Everything is possible because God is still in the healing business!

    I have a recommendation for your old lady hip pain. I'm 67 and thought the discomfort I had must be the cancer. I had an evaluation with a physical therapist and she did 13 myofascial (sp?) therapy sessions with me last winter. All that pain went away and hasn't come back. Medicare + my supplement paid for every penny. The uncomfortable spot in my other hip joint turned out to be arthritis. I'm taking Turmeric to avoid joint pain that can come from the aromatase inhibitor and it has helped that spot. I haven't even had a Motrin since January.

    I'm glad you're with us but sorry you've had this shocking blow to your perfect health, Hildegunn. It takes some time to wrap your mind around it but there's every reason to believe you're going to be fine for a long time. Ibrance was the first of many new meds for hormone positive MBC and there are many more in the pipeline. We Ibrance Pioneers are changing the world of MBC! My oncologist tells me it's a whole new world that he never dreamed would happen in his lifetime. He's getting toward 80 and I'm so glad he got to see this!

    I love your Corrie ten Boom quote. Her words always inspire me and I thank you for sharing them.

    P.S. I also take monthly XGeva shots. The Ibrance causes fatigue for many of us and naps are a thing for the first time in my life. I had mouth sores the first few months but ate Stonyfield Greek Yogurt and it was a cure! I have nausea some days. For that I break Phenergan tablets into fourths (sometimes eighths) and that takes care of it. My best to you!

  • tap321
    tap321 Member Posts: 1
    edited August 2017

    have you tried ginger for the nausea? I take a ginger pill and helps. My oncologist recommended ginger

  • JoynerL
    JoynerL Member Posts: 1,392
    edited August 2017

    Hildegunn, I've just begun my 7th course of treatment: Ibrance, Faslodex, and Xgeva and have virtually no side effects so far. I have extensive small mets in bone only: spine, sternum, and ribs. Fingers crossed for no progression in next scans on Sept 6th! I was stable at first scans in May: neither progression nor regression. Good luck in your journey...you are surrounded with friends and support.

  • nbnotes
    nbnotes Member Posts: 338
    edited August 2017

    Nkb -- The neutropenia and white blood cell values do tend to jump around quite a bit. The week off helps you to get back okay, and I think your body sort of adjusts to it a bit. I have started several times right at 1 or 1.2 for neutropenia levels and then actually been better when we take blood again in a month. My MO only tests it once a month after the first few months; just to see if it is high enough to restart unless there is a problem, illness, etc. during the month.

  • cive
    cive Member Posts: 265
    edited August 2017

    ladyolivia:  Go ahead and order the 125 mg, your MO can always adjust your time on/time off to accommodate it.  I've been on 125 mg for 7 cycles, but with every other cycle I'm only on for two weeks instead of three because of my white count.  I'm going to try and get my MO to adjust it to 100, but until then I'll just shorten the cycle.  You actually get more medicine on the alternating 1 and 2 weeks off at 125 than 100 with 1 week off.

  • Hilldegunn
    Hilldegunn Member Posts: 25
    edited August 2017

    lady Olivia I just started my ibrance and also have commercial insurance. My specialty pharmacy enrolled me in a med program through Pfizer which in changed my copay to $10/month. I know i plans vary nationally however There are programs that your speciality pharmacy or onc office can assist you in applying to lower your cops

  • Metster-Mom
    Metster-Mom Member Posts: 18
    edited August 2017

    Thank you for posting the article - so encouraging! I'll be starting letrezole and Ibrance soon. Right now just trying to enjoy the rest of the summer

  • Dianarose
    Dianarose Member Posts: 1,951
    edited August 2017

    I have to have a shot tomorrow to boost my counts. White is down to 1.6 and red are 6. I have never had this shot. All I know is it's in the belly. Anything that I should know from anyone who has had this?? Another transfusion on Thursday as well

  • Metster-Mom
    Metster-Mom Member Posts: 18
    edited August 2017

    Is it neulasta? I had that when I was doing ACT 3 years ago. It caused my body to be pretty sore for a few days after. They said Claritin helps but I found medicinal marijuana was the most helpful to manage the pain. Hope it goes well for you

  • Dianarose
    Dianarose Member Posts: 1,951
    edited August 2017

    M-mom- I think that is the shot they are going to give me.

  • PatgMc
    PatgMc Member Posts: 1,312
    edited August 2017

    Dianarose, be sure to take Claratin (or another antihistamine) tonight and for a few days. That kept me from having discomfort from the Neulasta shot. You are going to be jam-packed full of life-saving white cells for a few days and they might feel like tiny fireworks going off in your bones. Just lie back and know they're helping you! God bless you, friend.

    Metster-Mom, I love your screen name! So hip! We're glad to have you join us as we make our way through and past MBC! Stick around and get better with us. We hope you'll share your wisdom with all the survivors who come our way!

  • Dianarose
    Dianarose Member Posts: 1,951
    edited August 2017

    Pat- sounds sort of s

  • nkb
    nkb Member Posts: 1,561
    edited August 2017

    Nbnotes- thanks for your reply- they did do a two week check after first course of 125 mg and it was low so they stopped it and it took a few weeks to rebound enough to restart and they did a cycle of 100 mg with a test at two weeks. I was able to finish 3rd week. I did need to take 2 weeks off to get to ANC of 1 and they are starting me back on 100 mg and say I don't need a blood test at 2 weeks- just in a month before I restart. It worries me a little to not check it after 2 weeks.

    Dianarose- I hope you feel much better after your transfusion and neulasta

  • Dianarose
    Dianarose Member Posts: 1,951
    edited August 2017

    Got up and made some muffins for a King Arthur competition. I haven't baked in so long ! I was exhausted afterwards. How my life has changed. Hubby and I used to complete in a ton of baking contest. A few times he kicked my butt. I told him he must have had a good teacher lol.

    Off to the cancer center again. Not sure if I want the neulasta shot in my belly or arm, any advice

  • Metster-Mom
    Metster-Mom Member Posts: 18
    edited August 2017

    image

    Had anyone ever attended this

  • husband11
    husband11 Member Posts: 1,287
    edited August 2017

    My wife is having to take a third week off Ibrance because of her neutrophil counts. They are also planning to lower her dosage to 75mg. Hopefully 75 allows her to continue. Her new Onc is very strict about having minimum counts. Old Onc quit the breast cancer part of oncology.

  • jaycee49
    jaycee49 Member Posts: 1,264
    edited August 2017

    Husband11, I've been doing fine on 75 mg for 17 months. Maybe that will work for her. I hope so.

  • husband11
    husband11 Member Posts: 1,287
    edited August 2017

    Thanks for the reassurance, jaycee.

  • bigbhome
    bigbhome Member Posts: 721
    edited August 2017

    husband11, I also am doing well on 75mg for 19 months.

    Metster-mom, that looks very interesting! Unfortunately, we are headed to Tennessee and won't be returning until the 28th, otherwise, I would definitely sign up

    Hugs and prayers

    Claudia

  • PatgMc
    PatgMc Member Posts: 1,312
    edited August 2017

    This isn't an article about Ibrance or even about a breast cancer treatment. It's a message to that little voice in your brain saying there will be no cure for our kind of cancer, that holding cancer at bay and giving us a couple more years is the most we can expect. That's what the people with this kind of stomach cancer and the ones with one type of leukemia thought. The message today is, "Don't give up on a cure!"

    http://www.icr.ac.uk/news-archive/patients-with-ad...

  • PatgMc
    PatgMc Member Posts: 1,312
    edited August 2017

    If you're in Memphis or close by, you can still sign up today for Komen's Survivor Luncheon taking place this Saturday! I'm excited to be feeling really well on my 3 week break from Ibrance.....not exactly ready to run a marathon but without that fatigued feeling and no nausea! Looks like I won't have to curl up in anyone's lap or throw up during my speech! Win! : > P

  • intolight
    intolight Member Posts: 2,387
    edited August 2017

    Thank you for this Pat. It also gives an inkling of encouragement for staying on the 125mg dose when tolerable (if you read between the lines.)

  • faith-840
    faith-840 Member Posts: 926
    edited August 2017

    PatG, thanks for that interesting article. I believe these cancer therapies are only now beginning to explode with all kinds of possibilities. I can relate to how you're feeling being off Ibrance for three weeks. I've also been off three weeks and 2 days and it's amazing how much better I feel. MO gave me permission to take a break until after our trip to Italy when I passed out three weeks ago. We leave in a month and then get back the middle of October so it's a long break. I'm not sure what he has in mind for when I return. Same dosage or letrozole for awhile to see if I progress or a lower dosage? Whatever, it's been great to have some energy back again. I'm a little worried if all the side effects will start anew? Like mouth sores and hair loss and muscle pains? I guess I'll find out.

    Dianarose, I'm impressed you actually baked today. I haven't had the energy or desire to bake since this started back in Jan. '15. Hope your nuelasta shot was okay and you're not feeling too bad.

    Hugs and prayers for everyone,

    Faith (in the future).

  • PatgMc
    PatgMc Member Posts: 1,312
    edited August 2017

    Faith, I wish we could have lunch and celebrate our non-fatigued bodies! My taste buds are normal and that's really nice. I wonder if I'll have the mouth sores again when I begin again next week. I'll have to make sure I have some yogurt on hand. I'm so happy you'll feel good for your trip to Italy and hope this proves that you can take more Ibrance breaks in the future.

    The people who took the drug on the trial weren't given any breaks, of course, so we'll be establishing how this treatment is handled in standard practice. I keep remembering that trial at Anderson where people get one-fifth of 125 mg.! If my scans look good in the Fall, I may think about trying just the Arimidex for a while, knowing I can always add the Ibrance back or backing up to the 75 mg. I'd love to have energy for the Christmas season. I also have two bathrooms where the remodeling got stalled midway and I need to get them finished. And my hope is to finish a giant clean-out my daughter started for me last year.....48 years worth of stuff that needs to go!

    Have you considered seeing a physical therapist for those pains? Mine turned out to be in the fascia and were completely fixed with 13 visits. Hair loss is not a problem for me as mine barely returned after Carboplatin/Taxol in 2012. I just keep my little fuzz buzzed and wear a wig. I long since stopped grieving about it; it just is what it is. I keep thinking I'll get some eyebrows tattooed but am afraid I'll get infected and end up in a mess! I do still have some light eyelashes. I used Lash Boost from Rodan & Fields and it helped but my eyes swelled and itched and it wasn't worth the discomfort.

    What an adventure! But God is good.

  • Dianarose
    Dianarose Member Posts: 1,951
    edited August 2017

    I didn't get the neulasta shot yesterday. Instead getting a transfusion this morning, chemo tomorrow and the shot possibly Saturday . She said it was not going to be neulasta but its sister drug . Not sure of the name. It's a 2 and a half round trip each day. Tired of the drive already.

    Hope everyone has a great day