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Ibrance/Palbociclib/Pallas trial... experiences?

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Comments

  • anna-33
    anna-33 Member Posts: 108

    No hairloss here... But I feel tired, and think I am depressed. Cry every evening when my kids are sleeping. Afraid of what will happening with my two small kids if «worst case scenario»..

  • Billb464
    Billb464 Member Posts: 20

    Anna-33

    I am sorry that you are feeling bad. When do you go back to the doctor? I would definitely mention that you are feeling depressed. It could be from being tired, or it could be the overwhelming feelings that we have from having cancer and knowing that it is a lifelong new journey that we are undertaking. The doctor might prescribe a low dose antidepressant, it might even help with hot flashes if you are having them!

    Please let us know how it is going!

  • notmargaret
    notmargaret Member Posts: 28

    Hi. I am still on 125 mg. Just started Cycle 10 today.

    My blood counts have been persistently low from the outset, neutrophils hovering around the 1.0 mark. I did dip below that a few cycles ago and had to take an extra week off. The next time I dip below 1.0, they will lower my dose. As for other side effects, they've been manageable, but not nothing ...

    My hair doesn't grow much at all, so my short post-chemo pixie might be permanent for awhile. I have noticed some hair loss lately, but not enough that anyone else has noticed.

    A bit of constipation if I don't keep my fluid intake up.

    Some fatigue. I find myself sleeping in in the morning more than I used to.

    A few mouth sores.

    Definite joint pain, especially feet, if I sit still at all. Could be the Anastrozole.

    Some headaches.

    Some UTI-like symptoms.

    Hope this helps.


  • anna-33
    anna-33 Member Posts: 108

    I am so happy to be included in this trial.... even with the sideeffects... It gives more hope!

  • lexica
    lexica Member Posts: 138

    notmargaret - that sounds like me minus the mouth sores - i guess i'm having more side effects than I thought. Can I ask what UTI like symptoms you are having?

  • notmargaret
    notmargaret Member Posts: 28

    Bladder pain and some burning/pain with urination (but no infection on urinalysis). I had symptoms like this several years ago, so can't be sure that Ibrance was the trigger recently.

  • Fedders
    Fedders Member Posts: 4

    Hi everyone,

    I'm talking to the research nurse later today about the PALLAS trial so all of your comments above have been very helpful. What I can't quite figure out is if there's any data on HOW effective the trial is expected to be? If it reduces my risk of recurrence by 20%, it's definitely worth considering. However, if it's only by 1-2%, I'm not sure it's worth it.

    My cancer basically went from undetectable to the size of a golf ball (pre-chemo) in 7 months and it's a Stage 2B, Grade 3 cancer with an oncotype score of 47. So needless to say they're worried about recurrence. However, I have opted to have my ovaries removed (next week) so I'll be thrown head first into menopause at 41. Given that I'll already have to deal with the sudden onset of menopause - which they're expecting to be more drastic in terms of symptoms because I'm still relatively young - plus an aromatase inhibitor, I'm not sure I want to put myself through the side effects of the PALLAS trial if I'm only (possibly) reducing my risk of recurrence by a few percent.

    Any thoughts? It's always great to hear from others who are going through similar experiences!

  • lexica
    lexica Member Posts: 138

    Hi, Fedders - I don't think there is any data on how effective this drug will be on reducing chance of recurrence - I believe that may be one of their goals - to determine that as part of the study. I think it will also take them a while to determine this, and I don't *think* there is any preliminary data, which suggests they are not seeing trends yet (this makes sense because recurrence can take time).

    I can give you my experience: I am on Exemestane, Prolia (every 6 months), Lupron (to shut down my ovaries), Vitamin D and the Ibrance. My side effects have been manageable and I don't regret entering the trial for side effects. Yes, I have hot flashes and I'm tired (also have two young children and work full time). I expected my menopause symptoms to be worse because I am young as well and have not found that to be so. And I get occasional joint stiffness and headaches and constipation when I'm not hydrated enough. None of my side effects are severe enough to consider dropping any of my medications.

    I know it's a hard decision, even after I thought I wanted in and wanted the Ibrance so badly, I had a period of time where I thought I might regret it. Who knows how it will turn out! It makes the decision making even more frustrating that you have a limited period of time to make it as well. Good luck, and let us know what you decide!

  • Fedders
    Fedders Member Posts: 4

    Super helpful feedback, Lexica. Thank you so much! They did just tell me I need to complete radiation before I can start PALLAS (which won't be until late November) and they're ending the trial some time this fall so I might not make it in before it's done anyway. I'm having an oophorectomy instead of Lupron but otherwise my treatment is exactly the same as yours so it's really helpful to hear about your experiences.

    I'm encouraged by your experience of menopause at a young age. My mom didn't have many side effects of menopause when she went through it at 57 but several doctors and nurses have told me you typically feel the sudden onset of menopause more strongly when you're younger. I guess in the end it's different for everyone.

    I'm having my oophorectomy next week so by the time I'm done with radiation in late November, I'll have an idea of what symptoms I'm seeing from the menopause. I think that will help guide my decision. I'll keep you posted!

  • lexica
    lexica Member Posts: 138

    Yes, please do! I am still considering oophorectomy. I'd like to hear how your experience is. I think I would prefer it to having lupron injections for the next 10-15 years, but I am also slightly osteopenic already. I didn't realize they were close to ending enrollment, either! Thanks for the info :)

  • KammyMN
    KammyMN Member Posts: 1

    Hi to all! I started the PALLAS trial in March of 2017 and was randomized to take Ibrance. At first, I truly didn't know what side effects were from Ibrance, Femara or having my ovaries removed as they all occurred in close succession - that was an unpleasant time! My counts dipped but have always been just below normal range or within. Mouth sores initially (not as bad as chemo but unpleasant), fatigue, mild depression the first few months but could have been estrogen related - who knows? I have thick hair, but it continues to thin on Ibrance, grows slowly and my chemo curl is back. Eyebrows = hot mess. I do have funky things like super dry, peeling callous like skin on pads of my fingers, toe nails may fall off, super dry itchy skin on my back and I suspect my Lymphedema is partially due to taking Ibrance. I reduced dose to 100 for quality of life. Overall, still glad I'm doing the trial - hope we learn from it!

  • anna-33
    anna-33 Member Posts: 108

    Anyone else that is really tired??? The last week has been really hard because of this...

  • lexica
    lexica Member Posts: 138

    Fatigue is unchanged for me, but neuropathy anyone? I had very little with taxol, and it resolved completely, but it feels different this time, deeper almost, and it came on quickly, like in a weeks time. The fact that I have 18 months of this drug left and I'm having this now scares me a little...

  • akaamy2003
    akaamy2003 Member Posts: 3

    Hello all,

    I am in the home stretch of PALLAS (cycle 21 of 24) and in the drug arm so I wanted to chime in here. As we all know, it can be hard to figure out what is causing side effects when we are taking so many different things. I have joint pain, particularly when I first get up in the morning or if I've been sitting a while. My hair is thinning, and I have some neuropathy and edema in my ankles. For me the worst side effect by far is the "hand and foot syndrome" (similar to what KammyMN mentioned above). The skin on my thumbs, index fingers, as well as my heels, big toes and the balls of my feet is "hyperkeratotic" which means it is thick and hard. It cracks and peels, and is driving me crazy. The treatment is to apply an assortment of creams and wear gloves and socks to bed, which seem to do nothing. Walking is painful when the skin on the soles of your feet is breaking down! I can stick it out for the remainder of the trial, and hoping that eventually my skin will recover. I don't want to discourage anyone from doing PALLAS -- I'm told this particular side effect is rare. But since others have mentioned it I'm now curious about how rare it really is.

  • Billb464
    Billb464 Member Posts: 20

    I am on my 3rd cycle, still 125 mg, and don’t go back to the doctor until November. I agree that everyone has different reactions and how do we really know what is caused by medication, age, hormonal shortage just to make a few.

    I am taking it with tomoxifen, but went today to my regular oncologist and wants to switch over to Femara next month, and see if my estradiol stays low, and I stayin menopause. I do worry about the side effects, and since I don’t have many right now , hoping it stays that way.

  • lexica
    lexica Member Posts: 138

    How is everyone doing? It's been a while - I know September/October is always such a busy time for us. My oldest started Kindergarten this year! I still can't believe it. It's been tough keeping up with the new schedule, but other than that I haven't had any real new issues. Working with my PT and I think that is helping with the numbness/neuropathy. Hope everyone is doing well!

  • gymgirl0308
    gymgirl0308 Member Posts: 1

    I know this is a late reply, just joined the community! I just completed 1 year of the Pallas trial. I was on the high dose (125 mg). I was taken off because of a bad infection. My oncologist said that I got a good amount of the drug, not to feel like I was missing out on the rest of the trial

  • lexica
    lexica Member Posts: 138

    Welcome, gymgirl :) That's unfortunate, do you think the infection was due to low counts from being on the palbo? How did you fair with side effects? I just started to notice some hair loss - I'm a quarter of the way through my two year sentence (:P) and I am already looking forward to being done. I couldn't wait to be on the drug at the start, but I suppose I've just had enough of all these side effects popping up.

  • anna-33
    anna-33 Member Posts: 108

    I am in cycle 10 .... my hair has started to get tinner and my brows do not grow anymore... It is like this sideeffect came just «over the night

  • deedledee
    deedledee Member Posts: 9

    Thinking of you Anna. ((((Hugs)))).

  • notmargaret
    notmargaret Member Posts: 28

    Hi All --

    I am on Cycle 11, so about the same as Anna. My hair doesn't grow much at all anymore and has definitely been thinning over the last couple months. Hoping it will hang on a bit longer! Looking forward to hitting the half way point.

    notmargaret

  • Rioghnach
    Rioghnach Member Posts: 6

    Hi Everyone,

    I recentty met with my oncologist and she recommended the Pallas trial to me as I had an 8cm tumour and 11 positive nodes. Grade 1.

    I can't find the information I am looking for about it, maybe someone here can help - do the researchers only follow you for two years? Or is the effect of taking the drug for two years supposed to last beyond the two years? If you complete the two years and do not get a recurrence do you keep taking it ad infinitum then? Are we at highest risk in those two years?

    Also, don't mean to be too nosy but I have just turned 31. Are any of ye this age? I train martial arts, lift weights, swim, do a keto diet. Will the side effects get in the way of any of this stuff do ye think?

    I will be doing the Pallas trial while also taking tamoxifen and zoladex. Anyone on this combination? Thoughts?

    Any info would be great, thanks!

  • anna-33
    anna-33 Member Posts: 108

    Hey Rioghnach

    I was 31 when diagnosed as well... with minimum 8 positive nodes.

    I am in the Pallas trial. We get the Ibrance (medicine) only for the two first years but I think after those two years you have trial-followups three more years (once yearly).

    The aim is that they hope the medicine kill eventually remaining cancercells to decrease the risk of local recurrence and other mets.

    Everybody in the trials medicinearm get Ibrance, antihormones (aromataseinhibitators or tamoxifen) and premenopausales do get zoladex as well.

    With hormonesensitive breastcancer the risk of recurrence unfortunately last for years .... I have heard that the highest incidence of mets in hormonsensitive breast cancer is between year two and six, but some get mets before or after that. Still most do not get mets...

    I can not lift weights, but that is due to lymphedema ;(

    Good luck! Keep us updated

  • Billb464
    Billb464 Member Posts: 20

    hi everyone, hope all is well. I am on my 4th cycle of Ibrance, and have not noticed a lot of SE’s, I did stop taking tamoxifen this month and started letrozole. The awful leg muscle craps have some what subsided, and not as many hot flashes it seems. Hopefully my estradiol levels will stay low so I can stay on this. I have reconstruction surgery planned for November 13, so after this cycle, will take a break from the Ibrance for the month of November and then restart in December. My levels have been pretty steady, and I’m still on the 125 mg. Have a great week!!!

  • Fedders
    Fedders Member Posts: 4

    Hi everyone,

    Just as an FYI, I got a call from my oncologist yesterday to let me know that the PALLAS trial has closed. I'm not sure if they have quotas per state or region but they're nearly or completely full. Just in case anyone out there were still considering their options.

  • lexica
    lexica Member Posts: 138

    Thanks - I heard it was close to closing, but didn't know if they had officially done it yet.

  • anna-33
    anna-33 Member Posts: 108

    Hello... My anxity took over again and I am back on Effexor. Anyone else on Effexor or other similar mess here?

  • Misstic
    Misstic Member Posts: 50

    Does anyone knows if there are preliminary results of the PALLAS trial ? So we could check if it's worth the side effects...

  • anna-33
    anna-33 Member Posts: 108

    Misstic... I am sondering about the same...

  • lexica
    lexica Member Posts: 138

    That's an interesting question - at my last appointment with the trial oncologist, the trial manager said that they were stopping the collecting of the 'side effects' diary, since they had discovered that most of the side effects were not actually due to Ibrance. Thought that was interesting. I imagine that means they might be ready to publish on that topic soon, but I'm not sure.

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