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PLX4032 (people with BRAF gene) Has nobody had experience with this drug? I barely got any replies on my last post :-(

Forums General Melanoma Community PLX4032 (people with BRAF gene) Has nobody had experience with this drug? I barely got any replies on my last post :-(

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    Hi there everyone,

    Hi there everyone,

    Ive just started taking PLX4032 (4 days ago) as part of the BRIM 3 Trial.  When I first went on this trial back in July, I was randomized to recieve treatment with Dacarbazine (DTIC) , which didnt help me at all. I recieved it for about 5 rounds, when we discovered that my disease was progressing.  Then for a few months I went untreated, while I tried to sign up to other trials (focusing on the V600E BRAF Mutation), only to be knocked back for not meeting criteria by the slimmest of margins.  I then went on to the compassionate use of IPI, with no success either.

    So, Im finally getting the treatment that I've so desperately been waiting for, and I am positive that it is going to be the one that is going to work for me.  I just know it, and have faith in its ability to put my disease in the rubbish bin, where it belongs!!  I do know a lot about this pill, its tendency to only work for a certain amount of time, etc, but with this disease, I am living for today. and if I can go through months of 'todays' in remission, without having to worry about this horrible disease then I would be so thankful and happy.  Then when and if a bad 'today' happpens in the future, then I must find and have faith in another treatment……  but for now, I live for TODAY! :-)

    So, what I would like to know about is other patients experiences on this pill? 

    Did you get any initial side effects when you first started taking it? & did they pass? 

    How soon did you see a response?  & what to look for, in regards to it working or not?

    How well did it work for you? 

    What have been the worst side effects of this drug overall? 

    If it worked for you, how long did it keep melanoma at bay?

    If it worked for you initially but then stopped, what road did you travel down next?

    I'd really appreciate it if some of you wonderfully caring, strong, inspirational people out there would share your experiences and knowledge with me.  Because although Ive read a lot of info on the net, its still 'text book' information as far as I'm concerned.  Its based on statistics and the typical experience.  Im NOT a statistic and neither are any of you!  Im an individual and would like to find out other individuals personal stories and real life experiences.

    Thanking you all in advance and sending you all much love and light to guide each of  you out there in MPIP Land on this extremely cruel, lousy and bloody rough journey we're all on…..

    love Simmy from Oz   xoxo

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