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Ibrance/Palbociclib/Pallas trial... experiences?

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Comments

  • Melved
    Melved Member Posts: 1

    Hi everyone!

    I'm in the experimental arm of Pallas trial. It's almost been a year since I started Ibrance. I've been having side effects such as nausea, extreme fatigue, stomach discomfort. What side effects have you been experiencing? I feel like dropping out of the trial.

  • moderators
    moderators Posts: 8,739

    Hi Melved!

    We want to welcome you to our community here at BCO. We're sorry you're struggling on the trial, we can imagine how difficult it is to deal with the side effects. Just know this community is here to support you!

    The Mods

  • anna-33
    anna-33 Member Posts: 108

    KimPossible818... do you have the name of the aspirin trial?

    Melved... My biggest side effect are the low blood counts.. so already on a lower dose (cycle 2)

  • KimPossible818
    KimPossible818 Member Posts: 287

    Anna-33, I don't. I follow up with my MO at the end of March. I will definitely ask her then when I tell her I am not going to do PALLAS. I guess I have a month to change my min. Maybe because my Rads ends this Thursday, I will have a few weeks without any treatment to consider PALLAS more. I just really want my life back. I have done quite well through all the treatments, as I look back on it, but I guess I am afraid of side effects. I am less worried going forward, because I have done everything they have suggested I do up until this point. Struggling with the decision some days, but only because my MO recommended going for it. Of course they still may not select me. Lots of tough decisions on this journey.

  • MamaFelice
    MamaFelice Member Posts: 165

    I'm with you KimPossible! My MO suggesting I try and enter the trial or perhaps try xeloda. I just had my ovaries removed and will start Arimidex next week followed by rads. I want my body to become one with the Arimidex and give it a rest on other drugs, but I am constantly reminded that, like you, I had many nodes involved and my doc wants to try anything to ensure no reoccurring here. I'm hoping to meet with the PALLAS coordinator this week to learn more about the trial.

    Melved-- have you considered having your dose lowered? You can do that and stay on the trial. What dose you taking now?

  • anna-33
    anna-33 Member Posts: 108

    What are your oncologists view on this study? What have they told you? My first oncologist was so «happy» about it and was sure that it would increase my prognosis. But last time another oncologist and she was so negative in her way of speaking to me.

  • anna-33
    anna-33 Member Posts: 108

    How are you? Hope you all are doing fine! Happy easter

  • lexica
    lexica Member Posts: 138

    Hello! I've had a couple reactions from MO's - one told me it was my best choice for treatment and the other seems to not know much about it - she seems to think I'll be just fine.

    I met with the trial folks yesterday to sign the consent and will hopefully be randomized sometime this month. They still need my tumor block. The MO I talked with about the trial said that the doctors are learning not to 'overreact' when the blood counts dip, because it is usually short lived. Anna - are you still having trouble with your counts?

  • anna-33
    anna-33 Member Posts: 108

    Yes my counts are still low, so I am now on 100mg instead of 125mg...

  • anna-33
    anna-33 Member Posts: 108

    There need to be a lot of women out there included in this study... I hope they found a way in here! My oncologist told me they probably will close inclusion soon due to enough women/men already...

  • lexica
    lexica Member Posts: 138

    I was randomized yesterday into the Palbo arm. How is everyone else doing on this?

  • notmargaret
    notmargaret Member Posts: 28

    Hi All. I was randomized to the Palbo arm in December 2017. I just finished Cycle 5 of 24 and am on 125 mg. My absolute neutrophil count has been consistently low (1100, most recently). I took a one-week break a few cycles ago, so will need to reduce my dose next time I miss the targets. Hope everyone is well!

  • moderators
    moderators Posts: 8,739

    notmargaret, welcome to Breastcancer.org and thank you for posting! You are in good company here, so we hope you're finding the support and information you're seeking. If there's anything you need help with or have any comment for us, please feel free to contact us!

    Best wishes,

    From the Mods

  • anna-33
    anna-33 Member Posts: 108

    I am goining in for new bloodcounts in june... Afraid I need to lower the dose again..

  • notmargaret
    notmargaret Member Posts: 28

    Good luck with your test in June, Anna. I have mine this coming week! How many cycles have you completed?

  • Lallasus
    Lallasus Member Posts: 8

    I have had to lower dose as well. I am on 100 my at the moment. White blood cell count continues to be low.

  • anna-33
    anna-33 Member Posts: 108

    I am between cycle 4 and 5...

  • notmargaret
    notmargaret Member Posts: 28

    I am between cycles 5 and 6.

  • lexica
    lexica Member Posts: 138

    Hi, all! How is everyone feeling on this? Any side effects? I've had some tummy trouble, but that's about it. Going to finish cycle 1 next week, so I am still very early into this. Blood counts were lower than normal range, but the PI did not seem to worried...actually she seemed to think that it wasn't bad at all, so I'm still at 125 mg. Hope everyone is doing well!

  • anna-33
    anna-33 Member Posts: 108

    I had tummytrouble only in the first cycle... Now it is more dissiness and I feel tired even after lots of hours sleep... For the last cycle my wbc have Bern on the absolute edge... hope for better resultater next time..

  • notmargaret
    notmargaret Member Posts: 28

    Hi All! I am in the midst of Pallas Cycle 6. Here's what I've experienced with side effects:

    1. My absolute neutrophil count has been consistently low (range .79 to 1.3). I had to take a one week break from the palbo when I dipped to .79. Most recently, my ANC was just over 1.0. If I dip below 1.0 again, they'll lower my palbo dose.

    2. My hemoglobin was lower than normal for the first 5 cycles, but has rebounded to normal range.

    3. My platelets have bounced around between lower than normal and normal.

    4. My white blood count has been consistently below normal since starting the palbo.

    5. During Cycle 4 or 5, I had 7-10 days of nausea and light headedness. I told my doc about this, which resulted in a brain MRI that was normal. The nausea and dizziness is gone now.

    6. My post-chemo hair and nail growth has been super slow since starting the palbo.

    7. At the end of each cycle, the back of my head gets super itchy.

    8. I have periodic hot flashes.

    9. My joints (feet especially) are very stiff and sore when I get up after sitting or lying down.

    10. I've been having some bouts of constipation during the last two cycles and some lower abdominal twingyness.

    Now you all know way too much about me. Hope this is helpful. Please know that nothing about the above list makes me want to quit. The side effects have been manageable.

    notmargaret

  • lexica
    lexica Member Posts: 138

    notmargaret, that is so funny - i swore i had a bug in the back of my hair or something yesterday because it just kept itching and tickling! now I know I'm not going crazy - or at least, if I am, we're going crazy together :).

    I haven't had many other side effects that I've noticed - the tummy trouble has gotten better. I'm tired - but I am also back to work with a 3 & 4 (almost 5!!) year old. It's not the fatigue I felt during radiation or chemo - I'm hoping it doesn't get to that point. @anna-33, I have had some dizziness and headaches, but I thought that might be from the Aromasin - are you on Aromasin? I have had the hot flashes and a bit of moodiness, but it's manageable...crossing my fingers it stays that way!

  • anna-33
    anna-33 Member Posts: 108

    Lexica and notmargaret...


    Yes I am on aromasin, zoladex and zometainfusions (twice a year)... It is har to know what sideeffects that comes from what... Notmargaraet...our number og lymphnodes and hormonstatus are very similar...

    Guess what?!?! I have got a new lump beneath my mastectomyscar... Waiting for an ultrasound...

    Hope you are doing fine...

    I also hope more peolples find this tread soon...

  • notmargaret
    notmargaret Member Posts: 28

    Anna,

    I will keep you in my thoughts. Hoping for good results on the ultrasound.

    notmargaret

  • HowdyfromTexas
    HowdyfromTexas Member Posts: 1

    I’m in the trial. I’m experiencing fatigue, brittle nails, loss of appetite and strong desire to drink lots of water.

    I had 6 months of chemo and 6 weeks of radiation. I’m guessing that some of my fatigue is from the previous treatment.

    I want to go back to work. Is everyone able to work? Has anyone been challenged by their immune system? Are you living normal lives

  • moderators
    moderators Posts: 8,739

    HowdyfromTexas , so sorry that you are having these side effects. Fatigue is very common, but can be debilitating. we hope, and feel, that you'll get back to work soon!! Your mods

  • lexica
    lexica Member Posts: 138

    hi Texas, yes I'm leading mostly normal life... still only on cycle 1 but I feel pretty normal aside from fatigue. I have gone back to work full-time and I have two little ones so it's hard to say what the fatigue is coming from. I think it's probably a mix of everything with the Palbo making it just a bit worse. I haven't had any life effects from low blood counts. I just see it on the piece of paper when they give me my results. I hope it stays that way!

    Anna, thinking about you. Keep us updated!

  • lexica
    lexica Member Posts: 138

    Well, I'm on a one week break...WBC are critically low - 1.79. Anyone else's dip that low? I expected them to go down, but this seems like a big drop. ANC is also low, but not crtically.

  • notmargaret
    notmargaret Member Posts: 28

    Hi Lexica, Mine are 2.4 now, but did dip down to 1.7 around Cycle 2. My ANC has hovered around 1.0 to 1.1 throughout, except for one dip below 1.0.

    Notm

  • anna-33
    anna-33 Member Posts: 108

    Lexica ... mine white has been 0,7, 0,975, 0,925 and 1,0 after I started Ibrance... So I on a lower dosage now... 100mg...

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