The information on this site is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment. Content within the patient forum is user-generated and has not been reviewed by medical professionals. Other sections of the Melanoma Research Foundation website include information that has been reviewed by medical professionals as appropriate. All medical decisions should be made in consultation with your doctor or other qualified medical professional.
PLX4032 (people with BRAF gene) Has nobody had experience with this drug? I barely got any replies on my last post :-(
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…..
Simply type in plx4032 and click "go" and you should be able to find some information
Viewing 1 reply thread
You must be logged in to reply to this topic.
About the MRF Patient Forum
The MRF Patient Forum is the oldest and largest online community of people affected by melanoma. It is designed to provide peer support and information to caregivers, patients, family and friends. There is no better place to discuss different parts of your journey with this cancer and find the friends and support resources to make that journey more bearable.
The information on the forum is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.