First dose Palbociclib down the hatch... Pallas trial

Molly001Molly001 Member Posts: 419
For those who have an interest in clinical trials or the drug Palbociclib... The Pallas trial follows early er+ bc ladies at high risk of recurrance. The drug, Palbociclib, is given alongside hormone drugs for 2 years to one group, whilst the other has just hormone drugs alone to see how well Palbociclib is tollerated and if it can help prevent recurrance. So, just when I thought I'd done all I could to keep my cancer from returning, I was invited to participate in the trial. There are some possible unpleasant side effects from the drug, so not an easy choice. I got randomised to the drug group, and away we go with the trial that I was soooo hesitant to join. After a lot of fumbling around to get the right blood tests through the lab, and several hours waiting around for results, I got the go ahead. First dose taken this evening and so far so good. Hoping not to wake up shitting or spewing. I was feeling fairly guilty about getting this drug on the trial, as I know there are stage 4 gals out there desperately wanting access to this wonder drug, which is not on the pbs and thousands a month. My treating team were able to reassure me, though, that the more research etc is done, the better the chances of Palbo getting on the pbs. I hope in some small kind of way my participation aids bc treatment for future patients. We all know how important research is and has been at giving us hopeful futures.
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Comments

  • onemargieonemargie queenslandMember Posts: 1,211
    Best of luck with it lovey and hoping you stay well whilst taking the medication. Margie xx
  • LMK74LMK74 BrisbaneMember Posts: 767
    Hey Molly, I've been offered the same, I must say I feel apprehensive and haven't yet decided. Hope it goes well for you.
  • KatyJoyKatyJoy Rowville victoriaMember Posts: 169
    Hi Molly, I’m also on the Pallas trial and was randomised to the drug group so I have just started my third cycle of palbociclib. I feel very lucky to be able to receive this drug free, but your right, the more of us that participate in trials like this, the more evidence there will be of the benefits of these drugs, so that the government can justify putting it on the pbs so all can access it. So far I have had neutropaenia but that seems to be improving, maybe my body is getting used to it? And I’m very tired but I’m not sure if that’s due to the treatment I have received over the last 12 months. Other than that, I have been well. Good luck and here’s hoping it gets on the pbs soon!
  • Molly001Molly001 Member Posts: 419
    @KatyJoy glad to know someone else on the trial. I'm glad you're travelling well! 
  • Molly001Molly001 Member Posts: 419
    @LMK74 I grappled with the decision as I was sooo looking forward to reprieve after a long year of treatment. In the end I didn't want any future regrets and I also liked the idea of contributing back to the bc community, as I feel blessed to have had access to all my treatments. I'm aware that your treatments have been anything but smooth sailing, so whole other kettle of fish for you. My team assured me the drug is usually very well tollerated, you're followed closely and you can stop any time if it's not great. As with all treatments, it's very, very individual and you must choose what's right for you. Good luck and I hope you can come to a comfortable decision xxxooo
  • LMK74LMK74 BrisbaneMember Posts: 767
    Thanks Molly. I will have to make a decision soon . Not looking forward to the Letrozole when it starts. Every joint in my body hurts already, can only hope the Letrozole doesn't make it worse. It's a shame they don't tell us at beginning of treatment that when you finish you will feel like a crippled old lady lol.
  • UnicornkissesUnicornkisses Central CoastMember Posts: 401
    @LMK74 and @Molly001 I am also due to start the Pallas trial in a few weeks.
    It is good to know there are others on here I can ask about possible side effects.

  • PiccmePiccme Member Posts: 66
    Hi Ladies, I too have my name down for the trial. I am still waiting on randomisation so not sure which treatment arm I will be in. I do hope that I will be assigned to the drug group but am nervous re side affects and like you @Molly001 I will feel guilty if I am in the drug arm as many other stage 4 ladies are not able to obtain it, let alone the expense of it for those who can. Good luck to all those who have been randomised to the drug arm, hoping your side effects are minimal. I will be watching with great interest! It is great that they are reaching new avenues for treatment and it is a privilege to be offered a position in this trial. Sophie
  • SalpalSalpal Member Posts: 43
    Hi all, l would be interested to see how those in the PALLAS trial are going. l have been asked to consider doing this and am in 2 minds...would be great to hear some feedback xx
  • SisterSister Adelaide Hills, SAMember Posts: 3,752
    Good luck ladies
  • Molly001Molly001 Member Posts: 419
    Hi @salpal, in general, life on the trial is quite okay. I'm on cycle 9 of 24 of the trial. There are no major side effects that I can directly attribute to palbociclib. There's definitely fatigue, which means there's really nothing left in the energy bank for any kind of paid work after taking care of my kids. Luckily I have income insurance through my super keeping me afloat for now. I suffer from persistent sciatica, but this is more likely from carrying the extra kgs I gained from chemo and haven't lost. I was loosing weight on tamoxifen/palbociclib combo but I've been changed to zoladex plus aromisin with the palbo and back on the weight gain train... sigh! Otherwise, my neutrophils drop significantly each cycle, but not enough to stall the next cycle and I've not been sick becsuse of it. I often wonder if my recovery from chemo/radio would be greater if I weren't on the trial, but my tumor spanned 9cm with vascular involvement, so I'm happy for the extra line of preventative treatment despite the side effects. I'll be 42 when I finish the trial, and my kids are very little. 
  • SoldierCrabSoldierCrab Bathurst NSW Member Posts: 3,104
    @Molly001
      this might help you connect with any Pallas trial ladies....
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