Ibrance (Palbociclib)

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  • husband11
    husband11 Member Posts: 1,287
    edited February 2018

    My wife's neutrophil count is almost always below 1.0 (and often 0.5-0.6) and they always let her proceed with the next cycle of ibrance.

    Since ibrance has a half life of 29 hours, that means one day later, half of it is still in you, and 48 hours later, 1/4 of it is still in you. So, at the very least, taking it every second day does not result in an absence of the drug from your body. From what I've read, 3 - 4 half lives (so up to approx 4.8 days) would be the clearance time for the drug.

    So in other words, taking it every second day simply reduces the concentration of it in your body, but does not fully eliminate it.

  • midwest_laura
    midwest_laura Member Posts: 114
    edited February 2018

    Hopefull77: I have been working full time since the beginning.  I worked through big-guns chemo (DD AC-T) and continue working full time now with I/F.  This full time work includes about 2-weeks / month of travel to an office in the northeast.  I work from home the rest of the time.  Last month I had some thoughts around retiring due to extreme fatigue at the end of every day.  My new MO suggested that the problem may simply be lack of sleep.  Hot flashes wake me up for several hours each night.  Turns out, she was right.  We are working on fixing the hot flashes, first with Magnesium and flaxseed, followed by acupuncture.  I'm sleeping better and am able to get through the work day.  Do I feel like I did before all of this cancer nonsense?  No.  But with a few changes to fix my sleep, I'm ready for a few more years of full time work.  My experience says, zero in on the main problem and see if you can fix that before throwing in the towel.  To be fair, I think I may be in the minority here.  My body seems to tolerate the 125mg Ibrance fairly well.  Age, genetics, and luck probably play a big part.  I count those as blessings every day.  

  • Hopeful77
    Hopeful77 Member Posts: 13
    edited February 2018

    Great to hear so many are working, thereishope4us, Hobbes, Laura. You all not just work but also enjoy life to the fullest beating cancer. I still have a lot to learn.. I think with ibrance I will be able to work, but not so sure if chemo as I thought one will be so sick with Chemo and also the hair loss..

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

    Hopeful, I just finished cycle 13 of Ibrance and Faslodex. I have no side effects so far and feel normal and live normally. I know that this is likely to change at some point, but I'm enjoying a normal life (except for MBC hanging firmly over my head).

  • midwest_laura
    midwest_laura Member Posts: 114
    edited February 2018

    Working through big guns chemo was tough, but manageable.  The anti-nausea meds worked well for me.  I never felt sick as long as I took them on schedule for the first 3 - 4 days after the infusion.  Regarding the hair loss and working?  Oh, boy!  I could write a book on that one.  The 2nd hardest thing I ever did was walk into the office with the head scarf on.  I can't begin to explain how difficult that was.  The hardest thing I've ever done?  Walking into the office with the head scarf OFF and only 1/4 inch of hair.  (The weather was getting too hot and I was sick and tired of hiding.  It's not like they didn't know what was going on under there anyway.)  Facing my co-workers, the uncomfortable glances, the pitying looks, the awkwardness... those were difficult days.  But every day got a bit better.  I'm rather proud of myself for getting through it all with my shiny bald head held high.  Unfortunately, I'll probably have to do it all over again some day.  I think progression is likely inevitable at this stage of the cancer research game.  If I do need to do it again, at least I KNOW that I can because I've done it before.  Unpleasant?  Yes.  Doable?  Also, yes.  

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

    Another interesting article on progress with genetic testing and meds....

    The Latest on Genetic Testing for BRCA Mutations in Breast Cancer

  • Leapfrog
    Leapfrog Member Posts: 406
    edited February 2018

    Gracie....Gelclair has been the best thing I've found for a sore mouth. It's expensive but so worth it! I've found I can get two uses out of one sachet and a packet lasts a long time because if you use it once every 24 hours for about two to three weeks to start with you'll find your mouth has cleared up really well. It puts a protective coating on the mucous membranes which heals and soothes and strengthens. I've found that I don't have to use it very often now because of its protective action. For an example, I started using it in the middle of last year for about two weeks every month for two to three months and now I only use it for one or two nights when it's sore. Please don't give up on Ibrance. My oncologist has told me it's a slow worker and for me to be patient because I have extensive bone mets. If it's the correct drug for you, it needs time.

    Hi to the newbies.....to anyone concerned about TMs they're known to be an inaccurate measurement of activity and sometimes they rise when tumours are dying. Mine hop around between 450 and 520 and everywhere in between but I've learnt not to see that as significant. I don't ask for them. I leave it to my MO to keep an eye on them and know that he'll take measures if there's a problem showing up at a scan.

    Love to you all.....I've been off for a while Heart

  • grrifff
    grrifff Member Posts: 75
    edited February 2018

    NettaGER, I felt that same way last Friday. CT scan shows no new bone lesions and the few I had are healing. I was so happy!! BUT- my CA15-3 went from 139 to 176 after consistently falling for 6 months. I even made a new topic here but no one answered my question about plateauing tumor markers. My onc said it can happen.

  • NettaGER
    NettaGER Member Posts: 128
    edited February 2018

    grrifff: Sorry to hear that you are experiencing the same issue with tumour markers. My onc keeps saying that we are treating the tumour/mets and not the tumour markers. But it leaves a scary feeling that they might overlook something that is happening.

    I am also not sure how much the markers can be influenced by infections of mucous membranes. In my case, Ibrance has a strong influence on the mucous tissues in my nose (dry, constant bacterial infections), throat (sore), esophagus (heartburn), urinany tract (uti), anus (fissures), etc. We even believe that my "liver pain" comes from an irritation of the liver capsule. I lately read that CA 15-3 is produced by mucous tissue, therefore it appears somewhat plausible to me that all the irritated/inflamed mucous membranes produce some CA 15-3, which leads to an elevation of my CA 15-3 level. At least I hope so...

  • Lynnwood1960
    Lynnwood1960 Member Posts: 1,107
    edited February 2018
    Tumor markets are tricky things. My CA27/29 was running in the 40s then jumped to 62. My onc scanned me and all is stable. Now my markers hover around 60. My onc thinks the jump could be because I have inflammation in my body since I’ve been dealing with some chronic tendinitis. She is no longer concerned, she says she has seen this in other patients.
  • Pammac47
    Pammac47 Member Posts: 13
    edited February 2018

    I have been following this topic for over a year as I’ve been on Ibrance/ Femara combo. I was on 125mg dose, had to skip four cycles for a week and lived with diarrhea, anemia as my two major side effects. I have progressed further and won’t b on this treatment going forward. I’m now going to do a Faslodex combo. Wishing everyone the best as I said did this and don’t regret, even with side effects I felt better than I had in a long while.

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

    Good luck, Pammac! Let us know how you're doing!

  • Ashlyn
    Ashlyn Member Posts: 93
    edited February 2018

    Has anyone had vertigo or dizziness that results in nausea in their off week? It comes and goes. Makes yoga difficult. Experiencing it the last two cycles towards the end of the cycle and in the off week mainly. The dizziness worries me. Seeing MO Tuesday. Last head CT was in Sept and was completely normal. I dread MRIs so much and scared I’m going to have to have one

  • intolight
    intolight Member Posts: 2,338
    edited February 2018

    Ashlyn, my off week is usually my worse for nausea and a little vertigo. Mine is a se of the meds. I have had no tumor activity 9 months even with this. I wouldn't panic as I am sure others will chime in with a similar experience.

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

    yes on the nausea! I’ve been struggling with lightheadedness now for well over a year!! I get that ever single time I stand up where your ears get fuzzy sounding and you can hear during the heart beats? Sometimes I have to sit down before I pass out! Once it passes I’m fine

  • airlinegal
    airlinegal Member Posts: 252
    edited February 2018
    After I as on I/L for about a year, I had a severe bout with vertigo...ended up in the emergency room...until then never any issues with dizziness. Etc. checked with my primary dr and she said give it 2wks and it probably will go away. Sure enough it did. Have had a few light vertigo episodes since. Nothing major. I think it has to be the meds. I know they say the crystals in your ears are off when vertigo happens. But never had vertigo before, I wonder. As of May will have been on I/L for two years. My Onc schedules Pet scans every 3 mo...have one coming up in early March. I am now on 75mg with 21 days on and 2 wks off. I get a little nausea towards the end of the 21 days, but otherwise doing ok. In the first year it was tough..nausea, tiredness, etc. But all these se lightened and I asked my Onc do you think it's not working anymore. So newbies hang in there...hopefully the se will ease up for you too.
  • tanya_djamila
    tanya_djamila Member Posts: 1,530
    edited February 2018

    salutations to all of my ibrance dancers.

    Nice to see you back Leapfrog.

    My onc doesn’t do tumor markers.

    Just had my third scan last week and it’s working. The only met is in my thigh and it shrunk from 20cm to 5 and now is 3.

    Thankful and grateful

  • CloudNine
    CloudNine Member Posts: 19
    edited February 2018

    Tanya - What wonderful news. I'm praying the tumors on my spine and skull will shrink too. I'm new to the Ibrance dance, but appreciate you and all the others who share their words of hope. Feeling a bit down today from pain in my joints and the reality of my new life

  • cchilders79
    cchilders79 Member Posts: 38
    edited February 2018

    hi everyone!

    Well my numbers on 100 mg have been above 1.0 since I started five rounds ago. I am also anemic and those levels are kind of low I try to eat better and take an iron supplement. Good to know about pepcid because I was on omazerprole for heartburn during rads and it stopped working went back to tums which help occasionally.

    I do sometimes get a little light headed and need to sit down. This week has been quiet even though my sister had baby no 4 (I have three younger siblings: one from my mom which has all the kids, two from my dad a sister and a brother that sister has ms) so I am an aunt as of last night. Did get a new bed to help support this back of mine.

    I did work during chemo which was rough doing so in retail and worked until I had the surprise you have cancer in your back and need surgery last year. I just retired mainly because of all the appointments and just feeling tired and run down I couldn’t do it or go back. But I am proud of some of you ladies doing it!

    Other than that my week has been slow and I learned the half life of ibrance. Night y’all!

  • JoT
    JoT Member Posts: 10
    edited February 2018

    Hello ladies :) I'm on Ibrance - ok, I should say was! I started on the 125 but after 10 days my counts were too low so was told to stop.. it took 2 weeks for them to recover to an acceptable level to try the 100 dose. Same happened - after 10 days low counts, stop again.. a week later I am at 0.5.. I'm just wondering if there's is anyone else that has been through this scenario and if they managed on 75? And if 75 was still too strong then I am wondering what the next step would be. Yes, I know I need to be patient and wait and see ;) but my mind does whirr sometimes...

    Hugs to everyone x

    Oh - and I've felt absolutely fine all the time 👍Maybe a little tired in the evenings but I have a 3 and 5 year old and work full time so it's to be expected!

  • janky
    janky Member Posts: 478
    edited February 2018

    Does the diarrhea start after your 21 day cycle is complete? I finished my Ibrance Thursday, Friday had a mini bout with nausea, then diarrhea last night and this morning. This is the only SE I have noticed so far, other than fatigue :) Do you more 'experienced' mbc'ers think this is a SE? I will post my diagnosis info in the next day or so...Wishing everyone well today and always!

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

    Janky, I've experienced neither of those as SEs. Hope you feel better soon-

  • jaycee49
    jaycee49 Member Posts: 1,264
    edited February 2018

    janky, I had bad diarrhea after my second week of the second month at 125 mg. I immediately switched to 75 mg. But that's just me. I cannot tolerate diarrhea. My MS makes it uncontrollable (TMI). I never had any nausea and the 75 mg got rid of the diarrhea. I've been on it now for 22 cycles with stable disease. Yes, I think it is probably a se.

  • intolight
    intolight Member Posts: 2,338
    edited February 2018

    Janky, I have occasional diarrhea usually my third week. My onc told me to take Imodium as first sign. I do, and it usually kicks it almost immediately. I am on 125 from the start (21 cycles) and have never reduced my dose. Hope this helps.

  • marianelizabeth
    marianelizabeth Member Posts: 1,156
    edited February 2018

    Janky, Marian here~~I am two thirds of the way through cycle 7 at 125 mg and no diarrhea but that is because I am on opioids for my nerve pain. Sometimes I wish for diarrhea but I know that saying wishes coming true not necessarily being what we wish for. As for fatigue, I do consider it a S/E. My MO says he went to three sessions on Ibrance at the San Antonio conference in Nov. and did not hear anything about lower dosages unless necessary and in his opinion that would be neutropenia not fatigue. I only missed 3 days on cycle two below 1.0 neutrophils and since then have always been above. Janet, with your MS and diarrhea I can certainly see why you would go lower.

    I do get occasional nausea which is preceded by sweating and then projectile vomiting~~always no real warning and over as fast as it comes on. Since it is never right after taking my 12 hour time release I am not sure that it is the opioids or the Ibrance. It often occurs along with motion in the car and luckily did not happen in the last 10 days when I was sailing!

  • Jaylea
    Jaylea Member Posts: 440
    edited February 2018

    Janky, I've had a couple of bouts of the nausea/diarrhea tango, in the latter part of the cycle. Usually just lasts one night. It's a weird cosmic joke since the other 27 days are a no-go.

    Tanya, doing the Carlton over your scan results!

    Cloudnine, when you're feeling pain it's hard to stay balanced. It's the "is it healing or progression" question. I had several random and pretty intense pains in both met sites and not-met sites the first few months. What a roller-coaster.

    JoT, welcome, and I hope you find a dosage schedule that's just right.

  • janky
    janky Member Posts: 478
    edited February 2018

    Thank you everyone for your thoughts and suggestions - I am doing much better now after an Imodium, so will wait and see what else evolves. I go for blood work Wednesday, MO Thursday and cycle 2 starts Friday (all things being equal)!

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

    I'm thinking of all of you tonight and will be praying for good things. May those of you with diarrhea get a little constipated and may the constipated have a day of what we used to call in Alabama "the runs". Ibrance constipated me at first and I found that Lentil Soup made things normal (I like Progresso) and Post Raisin Bran made it even better. I haven't thrown up or been nauseated in one and a half cycles on the 75mg until last night. I just all of a sudden, with no warning upchucked my dinner. I guess my body just wanted to show me I still could! At the end of 15-16 cycles on 100mg I had been throwing up quite a bit. I'm not complaining about the current situation at all! Love from PatGMc

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  • Leapfrog
    Leapfrog Member Posts: 406
    edited February 2018

    I'm just completing the first cycle I've had which only needed a one week break. I had always needed two weeks for my neutrophil level to be high enough to start again. The side effects this cycle have been the same as they were when I first started Ibrance at 125mgm ~ a lot of nausea and indigestion constantly. I hadn't vomited since about three months into starting on Ibrance last February and thought, "Great, that's over. I can handle mild nausea" but this cycle my body suddenly decided banana smoothies are out of the question and not staying down any more. Luckily they come out as easily as they go in (sorry to be explicit if you're feeling queasy at the moment!). But, after three weeks of feeling yuk, my week's break has been wonderful! This is the best week I've had since my diagnosis...well, before my diagnosis, long before.....I've actually felt like a normal human being!! I'm expecting to start a new cycle on Wednesday and, if so, I'm also hoping my body will adjust to the one week break soon ~ one week's break being the optimal regime.

  • candy-678
    candy-678 Member Posts: 4,166
    edited February 2018

    JoT-

    Your story reads like mine.  I don't think there are many of us. I read the other posts about how Ibrance 125mg is working fine for them and I am jealous !!!  My counts dropped after 15 days of the 125mg ( ANC down to 400 ) and had to wait 3 weeks to restart ( to get ANC up over 1.0 ).  My MO and I decided to go to the 75mg dose next ( skip trying the 100mg ). The counts dropped to unacceptable levels after 1 week again !!! I stopped for 2 weeks and at my next appointment told the MO " Lets just use the 75mg daily for the 21 day cycle and see what happens". He said that would be "too dangerous".  

    So now I am on 75mg every other day.  My MO informed me this is "off label dosing" ( not recommended dosing ) and he is unsure of the efficacy against the cancer.  He wants to do weekly white counts ( I had one today ) to see if my counts stay up and he said we would have to do scans -CT- more frequently to monitor potential for progression.

    My situation scares me.  And I feel like a failure for not being able to tolerate the med.  

    I don't know where to go from here.

    I hope you and I get some advise from other posts.  Keep in touch with me. PM me if you want.