Forum Discussion

Glitter_Bug's avatar
Glitter_Bug
Member
7 years ago

Anyone on a drug trial?

First time poster: I had a mastectomy in October last year, 6 months of  chemo and have  had 9 sessions of radiation with 16 more to go. I have been asked to join a trial of a drug called Abemaciclib and have to make my decision very soon.  I really don't know whether to participate or not as the side effects seem too much like the bad side effects that I endured during a horrific six months of chemo. As I live in a small town it also means travel of a 4 hour return journey to a regional city to attend hospital. Is anyone already on this trial or have been asked to join?
abemaciclib
clinical-trials
  • arpie's avatar
    arpie
    Member
    7 years ago
    His @"Glitter Bug"  - Welcome to the forum - you've come to the right place for any questions re your treatment & side effects.

    Personally, I haven't heard of Abemaciclib - and I'm not on any trials (my Rad Onc  asked if I wanted to be on one - but I didn't fancy getting a placebo!)

    Check out this link - it is every time Abemaciclib has been mentioned on the site:
    http://onlinenetwork.bcna.org.au/search?Search=Abemaciclib

    You can use the 'search' function for any 'term' that you want to query!  ;)  

    All the best with your decision making ..... being rural as well, I know the hassle re all the travel!   What area are you from?  Someone else may be able to offer suggestions  ;) 

    Thinking of you!  xx
  • Glitter_Bug's avatar
    Glitter_Bug
    Member
    7 years ago
    Hi arpie,

    I live in North Qld. Thanks for the website, I will check it out. :)
  • LMK74's avatar
    LMK74
    Member
    7 years ago
    Hi @"Glitter Bug", I am on the palas trial which is palbociclib taken alongside with hormone therapy. I know the list of side effects sounded a lot like chemo so I was apprehensive but decided to give it a go. Apart from some fatigue I have no noticeable side effects. Arimadex is another story though. I hope you come to a decision you are happy with. All the best.
  • Glitter_Bug's avatar
    Glitter_Bug
    Member
    7 years ago
    Hi LMK74, thanks for that. I was speaking to a nurse connected with the trial and she said that the side effects have to be listed but not everyone is affected badly and the main side effect seems to be diarrahea which they treat. At this stage I am probably leaning more towards doing the trial but it is a bit scary. Glitter Bug :) 
  • Tennille's avatar
    Tennille
    Member
    7 years ago
    Always accept a drug trial if offered. People usually do better on trials as they are more closely monitored. 
  • LMK74's avatar
    LMK74
    Member
    7 years ago
    @"Glitter Bug", I was very apprehensive at first thinking it will be like chemo. So much better than that lol. Also you can always withdraw from a trial at anytime.
  • TripleNegMama's avatar
    TripleNegMama
    Member
    7 years ago
    if you don't want to risk getting a placebo you can decide to only do trials that are doing dosing studies, (where everyone gets the drug just in different doses) or doing with different combinations etc.  you can read up on the trial design before you make a decision so you know if any of the groups get placebo.  (if you do choose to participate in one that has a placebo group you won't know if you're in that group but that's no worse that if you sat at home and did nothing and at least you get closely monitored and contribute to the advancement of knowledge that might help others including your daughters.)