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Ibrance/Palbociclib/Pallas trial... experiences?

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anna-33
anna-33 Member Posts: 108
edited September 2022 in Stage III Breast Cancer

Hello

Because of my massive positive lymphnodes I might say yes to the Pallas trial... Other? Or anyone with experience with this medicine? Still nerd to Get randomised though..

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  • lexica
    lexica Member Posts: 138
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    I am going to enroll - have to wait until my rads are done in March, though. I'll keep you updated on what I find out

  • Hopeful17
    Hopeful17 Member Posts: 20
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      Hi ladies

    Currently on the Pallas trial, and have settled into it ok for the most part.

    Main side effects in the beginning, for me, were mouth sores, which eased off. Now just mainly fatigue and low WBC.

    Keep in touch if you both decide to enroll.


  • anna-33
    anna-33 Member Posts: 108
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    I am in...

  • MamaFelice
    MamaFelice Member Posts: 165
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    Anna in Norway-- do you know if you will be receiving Ibrance or if you will be in the control group yet? How long did it take to find out if you were selected for the trial and which branch you were placed in? I'm about fi ished with chemo and looking ahead to what is next. Pallas trial is what my mo is hoping for. Thanks for your input and any other info you can share

  • anna-33
    anna-33 Member Posts: 108
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    For me it took pretty long time, but that because of that no hospital close to me had the trial so I had to get an apointment in another hospital. That costed months. When I first was in at the hospital it went fast! Under weeks. They needed a part of my tumor for new analysis and new bloodcounts...

    They told me I am in arm A so I start Ibrance soon...

    Mama Felice...you hav two diagnosis from 2017?!

  • MamaFelice
    MamaFelice Member Posts: 165
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    That's great that you made it into arm A! I'm hoping for the same but I need to finish my rads first.

    Yes-- two diagnoses. Started wth 1 tumor that was removed by lumpectomy and ended up being 2.5cm and one margin wasn't clear so I needed more surgery. In an effort to avoid rads, I opted for BMX, and I thank God that I did! Bmx unveiled an additional 5.5cm tumor that was hidden from scans and who knows if it would have been detected or discovered had I not chose that surgery....hence 2 diagnoses. Crazy times, but glad it was all removed! How did your chemo go? Did you do rads too

  • Scaredbunny
    Scaredbunny Member Posts: 17
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    Hi girls,

    I am just in the waiting room of my oncologist to discuss Ibrance. I will let you know how I go. 5.6cm tumor grade 3 7/37 lymph nodes involved.

  • MamaFelice
    MamaFelice Member Posts: 165
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    Yes, Scaredbunny, please tell us how it goes and what the procedure is. We have similar tumor size, node involvement and grade. I assume ER+/HER2- because those are mandatory to enter. What chemo/rads treatment did you do prior? Thanks for sharing your experience! ☺️

  • OCDAmy
    OCDAmy Member Posts: 289
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    I am waiting to hear if I can get in the PALLAS Trial. Apparently you have to get approved prior to one year of diagnosis and for me I guess that is technically tomorrow. They are not sure they can get my tissue sample from surgery in time as that is needed for the trial. I spoke with the trial coordinator today and he is working hard at getting everything set up and has me scheduled with the doctor who is running the trial tomorrow just so we are ready to go. He said they told him they would give a two-day grace period so if he can get the tissue sample by Thursday looks like I am in. Now of course I still don't know which arm I will be in but sure hoping it is on Ibrance! A little worried about side effects but would love to talk with others who are also in the trial.

  • anna-33
    anna-33 Member Posts: 108
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    Please let me know if any of you get Ibrance.... Im soon doing my first check up after starting. I hope this medicine will prevent recurrence and of course mets.... It is hard being young with this disease,,

  • Hopeful17
    Hopeful17 Member Posts: 20
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    Hi ladies

    Anna in Norway, good luck with the start of the trial. I am 9 months into it now. I remember feeling very nervous about starting on the drugs, I wasn't sure which arm I actually was hoping to get into, but got arm a anyway.

    I'm sure it will bring you some peace of mind to know you are doing something extra to hopefully help prevent any recurrence. It's also reassuring to be monitored more closely than you would normally be post treatment, although I was disappointed when I learned they only check bloods for wbc, full blood count etc, but not tumor markers.

    Anyway, good luck to others hoping to be included in trial too.

    Looking forward to hearing the latest.

  • anna-33
    anna-33 Member Posts: 108
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    Hopeful17 ... Do you feel any sideeffects

  • Hopeful17
    Hopeful17 Member Posts: 20
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    hi Anna

    A few at different times, but nothing that made me want to stop.

    Mouth sores in the beginning, gone now. Tiredness and fatigue but not all the time, usually last week of cycle and week off. Oh and I had low neutraphil counts so had to lower the dosage, as per trial protocol. I had little bit of hair thinning in two spots but nobody else would notice, and I have not noticed any more hair loss this month so hopefully that will stay the same..

  • anna-33
    anna-33 Member Posts: 108
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    I am already on a break because of low white bloodcells ...

  • OCDAmy
    OCDAmy Member Posts: 289
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    Bummed out. I was trying to get into the PALLAS trial. You have to start the trial within one year of diagnosis. For me, that was Tuesday but they were willing to give a two-day grace period to get everything set up. I had two blood tests, filled out a bunch of paperwork, was examined by the MO conducting the trial, and all they were waiting on was a tissue sample from my surgery. They requested it nearly a week ago and as of noon Thursday they still had not processed it. Noon was the deadline for me to get into the study. I am really disappointed. There was no guarantee that I was going to be on the Ibrance arm but I was really hoping.

  • iamelaine
    iamelaine Member Posts: 39
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    As someone who is 14 years out now I am very encouraged in all the new studies/drugs that have come out since early 2004. When I was first diagnosed the protocol I received was very new, just out of trials. Thank goodness the quest for better and more effective treatments continues.

    Best wishes to all as you continue in the fight.

  • Lallasus
    Lallasus Member Posts: 8
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    Hi

    I am going to start the Pallas trial on Tuesday. I have been randomised to take Ibrance and am concerned about the side effects. I had a low Oncotype score of 10 following a mastectomy for a Stage 3 cancer which was a large tumour with one lympnode involved with macro 1 micro. I am confused as I have a low oncotype that puts me in the low risk category but a large tumour and some lymph node involvement which makes me high risk.

    I feel really unsure as to whether this is the right thing for me to do or not. I am going to start on the trial but I am also going to visit another hospital privately to discuss whether this is the right course of action for me. This is the second time I have had cancer and I think that I might be a DES daughter ( a drug that I think may have been taken by my Mother to prevent miscarriage when I was conceived ) which heightens the risk of breast cancer

    Has anyone got any advice or comments. ?

  • Hopeful17
    Hopeful17 Member Posts: 20
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    Hi lallasus,

    I can understand your fears and indecision. After what you have been through so far, its now difficult to decide whether you want to put yourself through more treatment and side effects. I was very undecided too about the trial, but decided to go ahead with it on my MOs recommendation. Then when I was randomized, I still was unsure how I felt, I think I secretly hoped I would be in Arm B with no drug, I was very fearful of side effects. But I can tell you so far, for me its been fine. Nothing major that I ever felt, this is terrible. And remember you can always stop at any time, so if you change your mind after 1, 2 months so what, just do what you feel is right.

    Maybe the 2nd opinion will help you with your decision, it will be interesting to see what they say.



  • Lallasus
    Lallasus Member Posts: 8
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    Hi Hopeful

    Thanks for your reply. I was also hoping that I would be randomised not to take the drug and then at least I could feel that I hadn't turned it down !

    Your answer has given me more confidence to start the trial. How long have you been on it for ?

    I am going to see my Prof on Tuesday and then to get a second opinion on the week after. I will let you know how I get on

    Thanks for your help

  • MamaFelice
    MamaFelice Member Posts: 165
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    Quick question for Lallasus and Hopeful17-- did you receive chemo prior to entering the trial, or choosing no chemo and going right to hormone therapy with ibrance trial? Curious as to how this decision was made for you both and would appreciate if you would share. Best wishes with Pallas! I'll be attempting to enter trial after I finish rads.

  • Hopeful17
    Hopeful17 Member Posts: 20
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    hi lallasus and mamafelice


    I'm in the trial now 9 months, going by fairly quickly. Good week this week, no tiredness.

    With regard to chemo, yes I did have chemo, and started on the trial after chemo and rads were finished. As far as I can remember you are eligible once you are on endocrine therapy, I don't think the chemo or rads matter. I'm not sure exactly why my MO suggested it to me, I presume because I fit the criteria but I would like to have known is it recommended specifically for particularly high risk?


  • Lallasus
    Lallasus Member Posts: 8
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    Hi hopeful17 and Mama Felice

    Thanks for the update Hopeful

    . I was told that the trial is for high risk patients as well.

    I didn’t have Chemo as my Oncotype score was only 10 so was told that Chemo would not be effective. I did have rads and finished in Dec. I got a letter about the trial just before Christmas but asked for sometime to think about it so disnt have the initial meeting until the end of Jan. Starting the trial tomorrow with mixed feelings but being told you are high risk after getting low Oncotype score was pretty scary and enough to convince me that I have little choice. Going to London in a weeks time for a second opinion from another Prof

  • anna-33
    anna-33 Member Posts: 108
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    Lallasus....Please keep us updated after your second opinion. Like you I am progesteronenegative and was told that might be a factor for high risk. At the same time they told me I should take aromataseinhibitators instead of tamoxifen. I am happy to be in this trial...

  • Lallasus
    Lallasus Member Posts: 8
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    Hi Anna in Norway

    I think I am considered to be high risk because of tumour size. I haven’t heard that this could be because I am progesterone negative but I will ask the Prof about this. Will post when I have had my second opinion It is good that you are happy to be in the trial and that also gives others confidence.

  • anna-33
    anna-33 Member Posts: 108
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    I am so sad... my white bloodcells are so low that I still can not start the Ibrance again? Had a long break, but it is not getting better ..

  • Lallasus
    Lallasus Member Posts: 8
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    Sorry to hear that. Hope your count bounces back. I am on Cylcle 1 day 3.

  • akaamy2003
    akaamy2003 Member Posts: 3
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    I am on Cycle 14. After the first cycle I had to take a short break due to low counts but things have been fine since then. I don't have noticeable side effects even though my counts are consistently on the low side. Things are going well so I'm planning to finish all 24 months. One thing to keep in mind is that the drug is free but the doctor visits, blood draws, and labs are not covered by Pfizer. You have to pay for those. In principle I don't like footing the bill for medical research but I decided that I would rather stay in the trial than to drop out to save a few thousand dollars.

  • MamaFelice
    MamaFelice Member Posts: 165
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    Thank you all for the updates!

    Lallasus-- I look forward to hearing what your 2nd opinion has to say.

    I meet with the trial coordinator this week to discuss and ensure I have everything ready to try and enter the trial once rads are done. Those of you who have been one it for several cycles, have you had to adjust the dose. It is my understanding that they start you off at 125, but I read that patients have fewer side effects at 100 or even 75 units. How has it been for you all? Thanks for your help and guidance

  • anna-33
    anna-33 Member Posts: 108
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    MamaFelice... I am on 100mg due to low white bloodcells...

  • KimPossible818
    KimPossible818 Member Posts: 287
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    Hello all. Glad to find this thread. I only have 5 more rads treatments, then all my major treatment is over. I started on Letrozole on 12/2, after my 2nd surgery. My MO highly recommends I consider the PALLAS trial. I have all the information. I am struggling to commit, though of course I may not be chosen. I was officially diagnosed on May 4th last year, and I see my MO again at the end of March and will make a decision then. Part of me is just ready for all the major stuff to be behind me, though I realize my stage and LN involvement wasn't good. I still have to trust that I have done all I can (minus the trial) to this point. I have actually done quite well all things considered.

    My MO mentioned another trial that included taking daily aspirin. I haven't inquired about that. Because I am being monitored for MS, well before BC came to be, that is my concern about not putting my body through one more thing for 2 years, in case I require treatment for that. So much to consider.

    Thanks to all who are doing it. I hope you do well!