Ibrance (Palbociclib)

1409410412414415945

Comments

  • jensgotthis
    jensgotthis Member Posts: 673
    edited May 2018

    Lauren, happy for you're nees overall. I had my hip radiated and it too showed up on bone and ct scans as continually healing and now 12 months or so later) it doesn't doesnt show up. The compare uptake to track it. If you can get the pet approved, maybe scheduled for a couple of months from now so you cangive the inflammation more time to simmer down.

    Reading along but not posting much. Just feeling blah latel

  • jensgotthis
    jensgotthis Member Posts: 673
    edited May 2018

    I think I’ve finally figured out that the Lupron shots are causing a lot of my emotional roller coasters. Anyone else really struggle after that shot? I get it every three months and the first 30 days are terri

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

    Lauren, WOW!!! Great news! You're going to be the one to lick this once and for all!!

  • ciaci
    ciaci Member Posts: 315
    edited May 2018

    Warming the shot has no effect on traditional side effects, just the pain (or lack thereof) of the shot actually going in, and any resulting soreness for an hour or so. Room temperature is definitely preferred. At Sloan-Kettering in NJ, they take it out of the fridge as soon as you check in, then by the time you get it (after labs and/or seeing the doc), it's the right temp.

  • LaurenH
    LaurenH Member Posts: 382
    edited May 2018

    Thanks Jen and Joyner Happy

    Jen - I had Lupron shots with my original dx for about 5 years but I got them monthly... I didn’t have those side effects but maybe the monthl shot has less impact? Anything that messes with your hormones can cause the symptoms that you describe so I would think it is the likely culprit. Hope you are feeling less crummy soon.

  • topdubu
    topdubu Member Posts: 6
    edited May 2018

    his is crazy--I've been taking this same multivitamin for years and have not look at the ingredients. My wife was about to get a refill, hey isn't pomegranate on your no-no list? Yup. I've been stage IV on Ibrance since Jan of 2017 fighting monthly to keep my blood number up while taking this daily. I've been making it work but sure don't need the negative help. Choosing a different multivitamin today, reading the label and revisiting the ingredients.


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

    Wow, Top, I'm headed to look at mine, too! Centrum Silver. Maybe it, too, is full of pomegranite and/or grapefruit in some capacity!

  • Seaway
    Seaway Member Posts: 158
    edited May 2018

    Hello all;

    This is my first post. I tried to enter my data but I don't know how it will be presented so I apologize in advance.

    In 2004 I was diagnosed with stage 3c left side breast cancer which was ER/PR+ and Her2+. It was classified 3c as I had an inoperable tumour in my supraclavicular node. I received a lumpectomy, AC/Taxol, radiation, and arimidex for 6 years.

    In 2015 I was diagnosed with ovarian cancer (yes not a met, a totally new cancer). I had a massive debulking hysterectomy followed by carboplatin and taxol (again!).

    On April 10th, following a CT on February 23 and a biopsy I was told that I had breast cancer mets to the lungs. They were ER/PR+ and now Her2-. I have recently had a bone scan and as my CA125 has been rising (which began the hunt for mets in the first place....none were found on an abdominal CT which suggested the breast CT) there is a suspicion that my ovarian cancer might be back too. I really hope not needless to say.

    I am just completing my first week of iBrance and my 3rd week of Letrozole. I have been lurking here for about a week and reading past posts and am so happy to have found this site and you wonderful people.

    my very best wishes to all,

    Cathy

    I see that my profile didn't show up and really don't know why or how to add one in this case. sorry.

    Also, I'm Canadian and live in Ontario along the Seaway.....aka Seaway lol

  • intolight
    intolight Member Posts: 2,383
    edited May 2018

    Cathy, welcome to our site although we are sorry you have to be here. You will find we are a friendly group known for our "no guilt" culture. Ask any question you need and feel free to respond at will.

    Chris

  • georgiabirdgirl
    georgiabirdgirl Member Posts: 28
    edited May 2018

    Welcome, Cathy. I’m sorry for all that you’ve been through, but I’m glad you found this group. It has given me a place to feel like I’m able to speak freely about this crappy cancer ride.

    As for pomegranate, I didn’t know that was a no-no. I knew about grapefruit. Is there anything else that I’m supposed to be avoiding?

    Miss



  • Daniel86
    Daniel86 Member Posts: 207
    edited May 2018

    Other than pomegranate and grapefruit, we were advised against st. john's wort (it's often found in herbal remedies for anxiety or insomnia) and sour orange (mostly used in jams).

  • Jaylea
    Jaylea Member Posts: 440
    edited May 2018

    Cathy, welcome, Canadian cousin. (My grandmother is from Victoria so I literally have Canadian cousins.) You've walked a rough path and deserve a break. I hope Ibrance is just the right treatment for you, that you tolerate it well, and for many, many years.

  • LoveFromPhilly
    LoveFromPhilly Member Posts: 1,019
    edited May 2018

    thanks for responding LaurenH and Ciaci.

    I’ll takw a look at other posts - sometimes it gets a little overwhelming sorting through all the convos - as awesome as it is that there are so many, so much support community:)


    Ciaci - that is interesting and also makes perfect sense to me! It sounds like your body is compensating for the lost sleep at night? the nighttime is an easy time for the mind to chatter. I take 20mg of melatonin (really good research on this as having highly anti-cancerous properties. Anyway, I take it about 1 hr before bedtime and I pass out. I wake up a million times a night with hot flashes but at least I’m falling asleep...

    One other thing that gets my mind off my mind is I listen to gentle podcasts or Buddhists talks that are all about the meaning of life and why we are here and I fall riiiiiight to sleep. And if I don’t fall asleep, I am listening to something that soothes my spirit.

    Have you tried anything like this?

    The only real thing that helps my fatigue is exercise...but these last 3 weeks have been partially intense with fatigue.



  • LoveFromPhilly
    LoveFromPhilly Member Posts: 1,019
    edited May 2018

    @jenngotthis hi!! I receive Lupron shots 3.75mg once a month.

    It may be helpful to ask what dosage you’re on because you could be on too high a dose for you. Also, I spoke with my Onco about the option of 3 month shots versus once a month shots and he said that the research shows that the 3 month shots are less effective. And it may have to be a higher dose which could cause worse side effects.

    I was given a 7.5mg dose of a similar drug but diff pharmaceutical company, and I got really sick from it - raging headache for a week and then sick for two weeks. Anyway, we went back to 3.75mg and I’m fine with that - emotional becaseu in menopause and it’s an emotional mess! But more so that I cry more easily (and I’m already a crier!! Shoot!!

  • LaurenH
    LaurenH Member Posts: 382
    edited May 2018

    Hi Cathy and welcome here! Even though you and I have chatted recently, i didn't know that you also endured ovarian cancer! Holy crap that's so unfair! Glad you found us and I hope that you find a comfy spot here with us.... Ibrance is pretty tolerable for most of us and I hope that it treats you well... and of course also that it works!!!

    Big welcome hugs,

    Lauren

  • junieb
    junieb Member Posts: 945
    edited May 2018

    just as a heads up: For those looking at their multivitamin because it contains Pomegranate or Grapefruit, I have been using "Garden of Life's - Vitamin Code 50 & Wiser" multivitamin for several years. It does NOT contain either Pomegranate of Grapefruit. It is all organic, plant based and has probiotics as well. Garden of Life also has a calcium supplement (again: plant based) called "Vitamin Code - Raw Calcium with D3 & K2 mk7", which help our bodies absorb the calcium better and not just pass through.

    All of the Garden of Life products are available on Amazon.

    I hope you will find this helpful!

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

    Junie, thanks for the vitamin update, and Cathy, wow....what a bummer for you. We all hope and pray that Ibrance will be an easy ride for you. You'll find this group to be endlessly supportive, knowledgeable, and kind. Welcome!

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

    my RBC and hemoglobin just continue to slide down week by week. I’m able to help my WBC a little by what I eat, but nothing is affecting the red blood count. Even taking slow FE is doing nothing. Any suggestions? I’ve tried dried apricots, raisins, spinach, otc iron supplements...

  • janky
    janky Member Posts: 478
    edited May 2018

    Welcome Cathy - I am from Innisfail, Alberta, so for sure Canadian 'cousins' ;) ,,,I have been on Ibrance since February 2018, so just finished 3rd cycle and all seems well, so I do hope and pray that your body responds the same!! This site is wonderful for information, support, venting - what ever your needs are at any given time!!

    Gracie - I do hope you figure this out sooner than later (liver??!) Best of health..

    Happy Day to each and all whether or not a mom, we all deserve a 'Day"!!

  • candy-678
    candy-678 Member Posts: 4,173
    edited May 2018

    Thanks to all who posted about my question about disability payments. I will try to continue working for now, but maybe disability income in my future.  All I know is, it is confusing.  Maybe when I get to that point I will take the advise and get an attorney to help wade thru the confusion.  For now I am battling kidney stones on top of everything else.  WhooHoo.  

    Jensgotthis--I get monthly Lupron injections 3.375mg.  My MO never gave me the option of every 3 months.  I have read of the every 3 months injection or the option of surgery to remove the ovaries, but we have never discussed those options.  As far as emotions,  I cry over sad commericals, get crabby with family members, and get depressed with my cancer diagnosis.  Hormones or situational????   Does anyone know if we who receive Lupron will continue indefinitely since we have not went thru natural menopause?  I am 47 years old and was not expecting to naturally go thru menopause till mid 50's---my mom was age 54.  That is lots of injections in my future.  

    Welcome Seaway.  Sorry you have to go thru this, but glad you found us. Ask any question that comes to mind.


  • Seaway
    Seaway Member Posts: 158
    edited May 2018

    Thank you so much everyone for the kind greetings. I am so happy to be here. I can't believe what happened last night. My son came for the weekend and my daughter, SIL and grandson were over. As they were doing the cooking I took my pills from the counter where I keep them and put them on the dryer. Later in the evening I fell asleep and woke up to hear the dryer on. My son unknowing had started his laundry. My Ibrance were sitting on top of a hot dryer with the moisture clouding the room. They were likely there for an hour. I took them out and the bottom of the bottle was warm but this morning I took my pill anyway and decided just to continue. OMG does anyone know if they would be affected? Lesson learned for sure.

    Cathy


  • piggy99
    piggy99 Member Posts: 183
    edited May 2018

    Cathy (Seaway), your Ibrance is fine to take. The regulatory registration package includes stability data for 6 months at 40C (~100F) and 75% humidity. They saw no changes in that span of time, so an hour on top of the dryer will not do the pills any harm.

  • intolight
    intolight Member Posts: 2,383
    edited May 2018

    Piggy, thank you for the info. I have always wondered whether sitting in the hot car for a short time would affect it. I pick mine up from the hospital and often stop at the store for a quick shop since I am already out. If it is too hot, I put it in my purse...

  • Seaway
    Seaway Member Posts: 158
    edited May 2018

    Piggy thank you so much. I won't worry anymore.

    best wishes,

    Cathy

  • Hobbes12
    Hobbes12 Member Posts: 88
    edited May 2018

    Seaway: Welcome from Victoria BC. I am about to start cycle 11, with minimal side effects. I hope that this works for you. These mixed tumours, some Er + some not are difficult to understand and treat. If you want a second opinion, ask to see Dr. Maureen Trudeau at Sunnybrook. She was involved in the original trials for Ibrance and so has lots of experience with this drug combo.

    Hobbes

  • Seaway
    Seaway Member Posts: 158
    edited May 2018

    Thank you Hobbes. I am going to wait for the first scans to see. I'm hoping to soon know about the bone scan and hopefully in the next few months if my CA125 going down whether my ovarian cancer has spread. I have no choice so I am hopeful that no only will this work but that maybe they can add Keytruda (or another drug) to take care of all this bloody cancer I seem to carry around. I've taken down her information and will keep it.

    Cathy

  • singlemom1
    singlemom1 Member Posts: 260
    edited May 2018

    Hi, was just reading the posts about high cholesterol and statins. My PCP just told me last week that they have not recommended testing my cholesterol since they would not recommend treatment with a statin due to being stage 4 if it was high. In trying to gain a better understanding I was told that they would not want to add another toxin to my liver. I am currently on 3 blood pressure pills besides letrazole, Ibrance,lunesta and Wellbutrin. She then made a comment that the concern is not about me having a heart attack in 10 years. However, she is very strong about the need for my blood pressure to be managed. I was pretty upset about the whole conversation. I am going to talk to my MO about it but it certainly seems that others are on statins as well as Ibrance. She also told me she does not recommend a colonoscopy. Has anyone else heard similar? I have been with this PCP for 30 years and they have always been very supportive and caring. Was really taken back by this.

  • janky
    janky Member Posts: 478
    edited May 2018

    Singlemom1 - I would like to know about the colonoscopy as I am due for one in the upcoming months :( not my favorite test for sure...interestingly, since my chemo which was complete April 2017 my blood pressure has totally leveled off, actually went quite low between treatments, and I now take only10 mg of apo-olmestartan, which I may go off of completely when I return home from my mini-vacay.

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

    Seaway, you are the very definition of a warrior! With both breast cancer and ovarian, it would make sense that you have one of the BRCA genes. Have you been tested? It would seem that Olaparib (Lynparza) would be a good choice for you since it has been approved for MBC and OC. Maybe there is a trial with that combined with Keytruda? I'll be praying for you, our new friend.

    PatG

  • neogirl
    neogirl Member Posts: 54
    edited May 2018

    HI All,

    I will be starting Ibrance/Faslodex combo in about 2 weeks. Sorta scared about taking it but I know I shouldn't be. I just worry about everything these days. Anyway, I have a quick question maybe someone can help me with. On the Ibrance, how long does it take before the side effects (tiredness mostly) kicks in. I am planning a vaca in about 6 weeks after starting the pills and don't know if I will be too tired and worn out for a vaca.