Forum Discussion

Molly001's avatar
Molly001
Member
8 years ago

Pallas trial

Hi all,

I've been invited to participate in the Pallas trial, where the drug palbocillib is given alongside hormone therapy drugs for two years. The trial is for early bc patients with er+ her- tumors to see if the combo of drugs is more effective than hormone therapy alone at preventing cancer from returning. The trial monitors participants for up to 10 years and you have a 50/50 chance of recieving the drug or being in the control group who do not recieve it. It requires a lot of attendance at appointments, which doesn't thrill me, as I have very little kids. The thing that really bothers me, though, is the list of possible side effects that may effect more than 30% of people. They sound an awful lot like chemo side effects YUCK.

I know it's a long shot as this drug is not yet readily available here, but has anyone got experience on this drug and are the side effects as bad as they sound? 

Naturally, I want to do all I can to prevent return of cancer and I also understand the importance of people agreeing to clinical trials. After all, a whole bunch of people once bravely put up their hand to trial the drugs and procedures I have recieved!

Thing is, though, it's been a long year, I'd like to not be a cancer patient now and I have a 50% chance of not getting the drug anyway. 
  • Shorelle's avatar
    Shorelle
    Member
    8 years ago
    I agree Molly001. They do lots of bloods to see if your eligible.  I had to repeat them because I was only 1 week out of chemo and they called me to say the levels in my liver were 125 and should have been 30... they first thing I though was its now in my liver. After 24 hours of stress my dr called me back and said its not for concern as its just a side effect from chemo. My levels after 3 tests came down. I was accepted on trial to be disappointed to not get the drug. Being on the trial will mean slightly more monitoring but with that comes increased anxiety.  Sitting around waiting in the waiting room with lots of cancer patients some well some very sick. Its heartbreaking.
  • Molly001's avatar
    Molly001
    Member
    8 years ago
    Thanks for your input @LMK74 @Afraser @Shorelle I wish I had a crystal ball! I'm leaning towards agreeing to do the trial. First of all, they need to run tests to see if I'm even eligible. Then I may not be selected for the drug group. If I am, and it's too horrible, I can stop the drug & be recorded as a patient who couldn't tollerate it. At least I will get some extra monitoring and can feel good about trying to help those on the journey after me.
  • Afraser's avatar
    Afraser
    Member
    8 years ago
    I haven't been treated with palbociclib but I have had chemo. Experiences with chemo vary a lot, some people have a horrible time but others find it fairly manageable. I assume that if you find the side effects become too difficult, you can withdraw from the trial. You may have other good reasons not to participate of course. Best wishes whichever way you choose to go. 

  • LMK74's avatar
    LMK74
    Member
    8 years ago
    My oncologist is also talking about this for me. Not sure if I will do it.
  • KatyJoy's avatar
    KatyJoy
    Member
    8 years ago
    Hi Molly001, I started Pallas trial almost a month ago. Like you, I had really had enough of everything and just want to get on with my life. I returned to work in late July and although still tired and deconditioned from this whole ordeal, I am doing ok and slowly feeling better. I also wasn't at all keen on the side effects either! I was actually quite teary when my oncologist asked me to do the trial but she said she would really like me to give it a try. I was randomised to the palbociclib group and have just finished the first cycle and am currently having the 7 day break. I have honestly felt fine, I have become a little more neutropaenic, but this is being monitored closely as part of the trial. Good luck with it. Feel free to message me if you want any more information. I am based in Melbourne and the trial is through ST Vincent's Hospital.
    Cheers, Kate
  • Bakdom's avatar
    Bakdom
    Member
    8 years ago
    I participated in a silimar trial and received Palbociclib, for me it was very similar to chemo. I also have kids and have had no regrets stopping what was a horrible drug for me.