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Ibrance (Palbociclib)

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Comments

  • 3Holly
    3Holly Member Posts: 201
    edited September 2015

    Sunshine, very sorry Ibrance didn't work for you.

    Though I know it is hard to do, try to reduce your stress as I know moving to the next drug is very stressful. I think there is promise in these new Beta blocker studies which suggests that stress hormones trigger the development and growth of breast cancer and other cancers (certain beta blockers block these stress hormones, and I hope they can find other treatments that help block stress hormones since many of us don't have high blood pressure but still have very high stress levels).

    Good luck with chemo, I am praying for good results for you!

  • Chattykat40
    Chattykat40 Member Posts: 37
    edited September 2015

    I'm with you Holly... My breast cancer diagnosis came a few months after a year of non-stop extreme stress. I believe whole-heartedly that it was the stress that fed my cancer and led me so quickly to stage IV. Now I'm stressed because of the diagnosis. Trying to de-stress but life just keeps throwing punches. Stress hormone blockers I think could make a huge difference for a lot of women.

  • mdillard04
    mdillard04 Member Posts: 83
    edited September 2015

    Hi ladies,

    I just started recently breaking out in itchy bumps that look like mosquito bites mainly on my left side but I am very itchy in general over the past few weeks. I figured my skin was just super dry, but now that bite/hives like bumps keep popping up, I wonder if I am having an allergic reaction. Anyone have any experience with this?

    Thanks,

    Monika

  • Kaption
    Kaption Member Posts: 2,934
    edited September 2015
    Monika,
    I have had a few tiny, itchy spots on my hands that look like poison ivy.
    But, I also had a reaction to something else I was taking (for a UTI) and when I called my MO she was concerned about shingles since my immune system is lowered. I mention that only because you said it's only on one side. I think you should certainly call your doctor.
  • Sunshine57
    Sunshine57 Member Posts: 13
    edited September 2015

    This thread can be very supportive and full of stage IV breast cancer info. This drug is very new and I pray successful for you all. I have however read afew things that are conflicting. I have seen a few members that are HER2-NUE +. Some using faslodex instead of femara which is the drug used in the approved trial study. We are all different individuals with different side effects and tumor markers as well as the different size dose. From my perspective there is alot more to be worked out in this drug. Praying sucess for all stage IV survivors whatever drug you use.

  • Florence2006
    Florence2006 Member Posts: 19
    edited September 2015

    I'm taking Femara with Ibrance but have been taking Faslodex shots for several years. The blood clots are also listed in the literature for Ibrance. A little discouraged and depressed today, not common for me. Started taking Ibrance 5 days ago.

  • Florence2006
    Florence2006 Member Posts: 19
    edited September 2015

    Can we fix the spelling in the name of this topic? It's "palbociclib."

  • susan_02143
    susan_02143 Member Posts: 2,394
    edited September 2015

    Wow, day 3-5 hit me on the backside of my head this month. Fevers, nausea, horrible hip pain, and general "yuckiness" all around. And at one of my lowest points, my thermometer died! Starting around 10am today, I began to feel better. A short nap between client visits, and I am back to normal. I remember that day 5 on cycle 1 and 2 were wretched, but last month it was not. Just shows you, every cycle has its own challenges.

    Florence, I think that only the moderators can change a subject title.

    *susan*

  • Florence2006
    Florence2006 Member Posts: 19
    edited September 2015

    I think that's the least of our worries--spelling. Sorry, I was a teacher.

  • Lynnwood1960
    Lynnwood1960 Member Posts: 1,107
    edited September 2015

    Susan, I have had a few of these days myself. I just finished my 5th cycle and happy to report that I only had one day like that this cycle. Maybe our bodies adjust after a few cycles.

  • Kaption
    Kaption Member Posts: 2,934
    edited September 2015

    I do think maybe our bodies adjust some. I have 4 days left in cycle four. I've had a couple of "hit by a truck days" but have been SO much better than last cycle. Just took a yoga class tonight. Felt like a miracle

  • mimipickle
    mimipickle Member Posts: 160
    edited September 2015

    Okay , bit off topic here but I figured this was a group that could answer this question. I'm flying for the first time with my foob and Ibrance/Femara--so what do I do doing through TSA security? Wear the foob and hope it doesn't set something off or go without it? Is it okay for the meds to go through the scanner?

    Florence, Spelling haha. I was a teacher too and it's hard to turn it off.

  • babs6287
    babs6287 Member Posts: 1,619
    edited September 2015

    Ellelou,

    I never had an issue when I traveled. I keep my meds in one of those Sunday-Sat holders. And as far as the foobs, do you have a card from your Dr about them? I did and showed them as I walked through security so I didn't have a prob with that either.

    Safe flight,

    Babs

  • Myra1211
    Myra1211 Member Posts: 532
    edited September 2015

    Ellelou, I have been thru security numerous times in 17 yrs. with my foob. Never any problem whatsoever. Myra.

  • Lynnwood1960
    Lynnwood1960 Member Posts: 1,107
    edited September 2015

    Ellelou, I flew in May, wore the fob with no issues. I put the meds in my carry on bag in their original containers, there were no problems at all. I think it's ok for them to go through the scanner, they are going through there for just a few seconds. I was also worried before I flew and was quite surprised at how easy everything went.

  • Gatomal
    Gatomal Member Posts: 418
    edited September 2015

    it has been a heck of a week, with a nighttime drive from San Francisco to Reno last Fri night (so most of the kids would be asleep) and settling into our new (old) home. I didn't get to bed until 2 am, and got up at six with the babies, and I just don't feel like I've recovered. A couple of days since with a good long nap, I now feel that I was able to fight off the sickness (swollen neck glands) that I was getting, but I still feel like I've been hit by a truck. My sacroiliac joint, which gave me some trouble during pregnancy, has gotten much worse in the past week, and I just feel so weak. We are still looking for babysitters, so my 76 y.o. Mother and I have been managing the four kids alone. Not sure if a "normal" Cancer free person would feel tired too,but I'm suffering. Just two pills left in my first cycle...hoping to rebound on my week off. Please chime in if subsequent cycles have gotten easier from a fatigue perspective

  • 513mgv
    513mgv Member Posts: 54
    edited September 2015

    hi e everyone, day 27 of cycle 1, WBC 4, neutrophils 1.6 on Friday. I www as to start cycle 2 tomorrow but now I have a raging sinus infection and my husband was pneumonia. I guess I'll have to call my oncologists this morning. Can't sleep Marilyn





  • lenn13ka
    lenn13ka Member Posts: 104
    edited September 2015

    Gatomal - subsequent cycles get much easier but sometimes it may take 3-4 cycles to work everything out.That is why they follow you so closely in the beginning ( you are on a trial right?). I had a dose reduction at cycle 5. I am now heading to cycle 9. The "hit by the truck" days are gone, blood counts are now normal and just a few quirky side effects.

    Good Luck everyone.


  • babs6287
    babs6287 Member Posts: 1,619
    edited September 2015

    Gatomal

    Yes thank goodness subsequent cycles get easier!!!! But sometimes it does take a few cycles for that to happen!

    Babs


  • Lynnwood1960
    Lynnwood1960 Member Posts: 1,107
    edited September 2015

    Gatomal, my 5th cycle has been the easiest by far. WBC sitting at 3.2 , pretty much staying around there. I am on 100mg, my onc was thinking of increasing my dose but decided to leave it at 100mg. She said she would rather have my counts stay about the same, then increase the dose and have them drop. I have now "graduated" to bloodwork every 3 weeks and visit every 6 weeks. My onc said I am one of her patients who do better the less I see her and she is SO right!!

  • Gatomal
    Gatomal Member Posts: 418
    edited September 2015

    thanks for the responses. It is encouraging! My neutrophils were 1.2 at two weeks on 125mg, so I wonder where they are now. The trial says they will stop drug for a few days if you drop below 1.0.I'll find out next Wed. I have an MRI scheduled the same day for my old spinal fusion. I've been having some pain Here's hoping I find some good babysitting help soon. Thanks all!

  • pearlady
    pearlady Member Posts: 390
    edited September 2015

    Gatomal it does get easier with each cycle.  I've been on since the end of February, so I've lost track of the number of cycles.  Also my counts have stabilized.  Right now I'm ready to start my next cycle tomorrow and all my counts are normal except the WBC, which is only slightly low.  Had my counts down yesterday, so the onc feels that in the two days until I start on Thursday the whites will bounce back as they have been.  I do take some supplements to help with the counts and have found that they also help with the fatigue.  No hit by a truck days since the first few cycles.

     


     

  • dlb823
    dlb823 Member Posts: 2,701
    edited September 2015

    Glad to hear positive reports about the cycles getting easier as time goes on! My GRAN# bounced back from 900 six days ago to 1500 yesterday, so I'm onto cycle #2 as of last night.

    But my RBC's continue to fall. In spite of eating a bit of molasses, some animal protein, and even an occasional vegan iron supplement, my RBC was only at 3.42 yesterday.

    Question: Do you all get your CBC checked mid-cycle? My UCLA onc doesn't do this, but after seeing what happened to my counts the first cycle, my local onc's PA, who has much less experience w/Ibrance, thinks we should check counts weekly, and I'm wondering if that's prudent or really necessary.

  • susan_02143
    susan_02143 Member Posts: 2,394
    edited September 2015

    The protocol is that for the first two cycles you should have blood work done bi-weekly. Assuming your counts are good during those two cycles, you can then move to once a month.

    *susan*

  • moissy
    moissy Member Posts: 371
    edited September 2015

    Hi All - Hope, thanks so much for starting this thread and thanks to all for sharing your experiences! Finished my first cycle. Had pretty minimal side effects, but my ANC count dropped to .5 and stayed low. I ended up having to take two extra weeks off in addition to the normal time off. I'm now reduced to the 100 dosage. I talked with the pharmacist who said they are seeing about 50% of patients having to reduce dosage. She said a few people have been able to resume higher dosage after being on the lower one for awhile.

  • Lynnwood1960
    Lynnwood1960 Member Posts: 1,107
    edited September 2015

    My onc was in her words, overly cautious about the blood counts because this is such a new drug. I had weekly bloodwork for the first 3 cycles, then every 2 weeks. After 5 full cycles, now getting bloodwork every 3 weeks

  • moissy
    moissy Member Posts: 371
    edited September 2015

    Ellelou - I did get stopped going through security wearing foob. The screener pulled me aside and discreetly asked if I had "tucked a little something inside"....Once I explained what it was, they quickly sent me on my way, but now I choose not to wear going through security and pack it instead and just dress to camouflage.

  • Hummingbird4
    Hummingbird4 Member Posts: 220
    edited September 2015

    My MO is following the protocol that Susan just mentioned. First 2 cycles - bloodwork bi-weekly. Now that I'm starting cycle 3, counts will be checked only once a month. And this is with a few very low counts. Just barely above the "danger zone." But my neutrophils stay at the bottom of normal, so I'm being kept on the 125mg dose.

    As far as my TM's, I had a doubling before cycle 2 and just had another check yesterday. Up slightly still. My onc said they are seeing a rise in TM's in the beginning and then a decrease for some. I was so hoping to see a downward trend. So - I'll have scans in 3 weeks to see what's going on. I really want to stay on this treatment because I feel good with no se except the low counts. I'll keep on hoping for good results! Wishing everyone good luck.

  • Myra1211
    Myra1211 Member Posts: 532
    edited September 2015

    Hello all, just had my bloodwork and exam....hip, hip, hip hooray my TMs finally started to behave. DOWN!, just a bit, but DOWN. Took 6 cycles, but my onc was so confused because my scans were better. He said he had another pt. On Ibrance for 3 months with very rising TMs and great scans. There seems to be some ups and downs with this drug. As for bloodwork, I was having it every 2 weeks, but my onc said now they have all become stable and consistent so I will be going to once per month.

    So excited, so gang hold on there seems to be some conflict with Ibrance. My onc said that's why they don't just rely on markers and look at a whole picture. His experience is wonderful.

    Hugs to all...Myra.

  • Chattykat40
    Chattykat40 Member Posts: 37
    edited September 2015

    That's great news Myra... I've only had two cycles of Ibrance so far and my TM's have been up but now I'm feeling a little more hopeful. I'll get my first scans soon and hopefully they will be good ones! I am having minimal side effects from the Ibrance really and would like to stay on it.