Does anyone know how to look up clinical trial results of targeted therapy drugs?

a_oaklee
a_oaklee Member Posts: 566 Member

I am wondering if someone can tell me where you get this type of information for drugs that are already FDA approved and for drugs that are in trial.  I'm also a bit curious (as a side note), does anyone taking these drugs have any interest in knowing this type of data?  I'm on the fence about whether or not I want to know.  Sometimes information does hurt my ability to think positive thoughts. 

Thanks.  Annie

Comments

  • GSRon
    GSRon Member Posts: 1,303 Member
    HI Annie...  You can google

    HI Annie...  You can google the drug and get a lot of info about it... but it really is not that helpful.  Same with side effects... some people have few some have many.  Although knowing what to look for side effect wise can help prepare, just in case.  So, for my first drug, I got my Onc to give me a drug for nausea... and I never had any... lucky..!

    As for the results, that data is somewhat obtuse.  So, if the drug has a 28% response rate, and then they mention how many months, etc.  Now that sounds low.  But that includes people that could not tolerate the side effects and had to stop the drug.  Plus some people have other health issues that end up being a conflict.  And besides, the odds really do not matter..  what matters is that the drug works for you.    Being we are all different, the only way to know for sure is to try it..  That said some of the sub-types of RCC are known not to respond well to some drugs.

    Good Luck..!

    Ron

  • NewDay
    NewDay Member Posts: 272
    GSRon said:

    HI Annie...  You can google

    HI Annie...  You can google the drug and get a lot of info about it... but it really is not that helpful.  Same with side effects... some people have few some have many.  Although knowing what to look for side effect wise can help prepare, just in case.  So, for my first drug, I got my Onc to give me a drug for nausea... and I never had any... lucky..!

    As for the results, that data is somewhat obtuse.  So, if the drug has a 28% response rate, and then they mention how many months, etc.  Now that sounds low.  But that includes people that could not tolerate the side effects and had to stop the drug.  Plus some people have other health issues that end up being a conflict.  And besides, the odds really do not matter..  what matters is that the drug works for you.    Being we are all different, the only way to know for sure is to try it..  That said some of the sub-types of RCC are known not to respond well to some drugs.

    Good Luck..!

    Ron

    Targeted therapy statistics

    Hi Annie,

    If you don't mind sorting through a lot of technical info, here is an article with stats for all of the FDA approved RCC drugs.

     

    http://www.medscape.com/viewarticle/736008

     

  • Peggyz
    Peggyz Member Posts: 10
    Clinical trial drug results

    There is not an easy way to determine what trial results mean to you--which is always the essential question.  It is just best to remember that trials and the data is really to give some general comparisons and to create a common language for all the doctors.  Where you fit is far more difficult to determine.

      The data that comes from trials is always based on the group comparisons, and even if you "sound like" the group, there are variations in that, too.  For example, some trials are with newly diagnosed patients who have had nephrectomies and nothing else.  Some trials will have included patients who have been treated with different drugs previously, and other not.  Most trials are given to patients who have clear cell RCC, so a big mix of non-clear cell patients in another trial may affect those outcomes.

    Also you must be sure you understand the language.  You will see some writers referring to survival of 12 months, or the drug "giving you 12 months".  Be aware that no trial will state that.  That info is usually couched in terms like "Progression Free Survival" or PFS.  That means that the patient GROUP had no new obvious disease (or progression) for 12 months.  That is usually the median number of months, with half having a longer period of PFS, and half having a shorter period of PFS.  You might also see a range given of 6-28 months or similar.  That means that some progressed at 6 months, but someone else did not progress until 28 month, about again the median was 12 months. 

    Overall Survival (OS) is used less often of later, thanks to the fact that we are surviving longer, and often there is no way to measure the median OS survival when lots of patients continue to live!  Yay!  But those same patients may go on to try different medications, or did so previously.  Thus that OS is a messy, less helpful statistic to use.

    On my blog at www.peggyRCC.wordpress.com, I try to explain this and other RCC issues in greater detail.  Always happy to respond with the information library that I have.

    It has been ten years since I was in the hospital undergoing high dose itnterleukin 2 treatments, which saved my life and turned me into a kidney cancer advocate.  Wishing good health for all, starting with information to help you understand the manage your disease.

     

    Peggy z

     

     

     

     

     

  • a_oaklee
    a_oaklee Member Posts: 566 Member
    Thankyou

    Thank you very much for responding to my question.  You all are amazing!  Such a wealth of information. 

    From an educational stand-point I am just interested in learning more about trials and how they work.  I do realize with statistics you never know what that means to you as an individual.  I would like to do some research about certain targeted therapies. 

    Currently I am specifically interested in Inlyta.  My husband takes 7 mg twice a day.  I was told that the goal would be to take 10 mg twice a day.  I read on Smart Patients where people go on and off of it.  What I am wondering is if there are statistics re the efficacy of the different dosage levels?  Was there any testing and research re starting and stopping the drug and if it's helpful or detrimental?  I've read personal accounts online, and of course each oncologist has their educated opinion, and they differ.  I am wondering what does the research say about this.  I want to read scientific data, and not just information prepared by the manufacturer for patients.

    Thankyou again!

    Annie