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.

Rollcall for people with experience with Rouche BRAF/GSK Braf or IPI

Forums General Melanoma Community Rollcall for people with experience with Rouche BRAF/GSK Braf or IPI

  • Post
    killmel
    Participant

      Hi ALL,

      I have a friend that needs to make a decision on picking systemic treatment. She is stage 3c & has tumors in her thigh. Primary was in her bottom leg-2006

      She was given 2 options Braf or IPI.

      She thinks that Braf seems to be easier side effects than IPI side effects. Any feedback on side effects??

      If you get a response & tumor shrinkage or eventually a NED status while on Braf, do you still have to continue taking the Braf pill for life???

      Any feedback on IPI would be appreciated??

      Hi ALL,

      I have a friend that needs to make a decision on picking systemic treatment. She is stage 3c & has tumors in her thigh. Primary was in her bottom leg-2006

      She was given 2 options Braf or IPI.

      She thinks that Braf seems to be easier side effects than IPI side effects. Any feedback on side effects??

      If you get a response & tumor shrinkage or eventually a NED status while on Braf, do you still have to continue taking the Braf pill for life???

      Any feedback on IPI would be appreciated??

      Thank you so much for taking the time to comment on this post.

       

      Loading spinner
    Viewing 1 reply thread
    • Replies

        I can only speak about the B-Raf but I have great news!  After 12 weeks being on it my tumors are still shrinking!  I had lung tumors which were removed but then I metastized to the pleura which are inoperable. 

        I started on the Roche clinical trial here in Switzerland on June 14.  On July 22, first scan, the tumors showed shrinkage.  Yesterday at the 12 week scan they were STILL SHRINKING!  Now I know this is not a cure but it is buying me awesome time. 

        As for the side effects, weird but manageable…

        The first 5 days were a piece of cake but then I started noticing my feet hurting, the bottoms of them.  Then I developed extreme sensitivity to the sun, like immediate feeling of burning and itching.  I developed a rash over the whole body, luckily it did not itch.  Arthritis developed throughout my entire body, so much so that my husband had to help me undress.  And then the doctors here in Switzerland would not met me use Aleve or Ibuprofen…  They gave me Novalgin a drug that the US has banned…  Oh well.  Eventually the arthritis lessened up and the rash went away.  Two times my bottom lip swelled up like Bart Simpson but that also went away.  The arthritis now comes and goes and moves to different parts of my body, nothing I can't deal with. My feet areswollen enough to make shoes feel tight.   I mainly feel it at the end of the day and when I fist wake up.  My doctor says she has seen all of these side effects in other patients as well.  Most days go by without a whole lot of pain.  

        To answer your other question, I was told that I would be on this drug as long as I am responding.  Could that be forever?  Let's hope so!

        I don't know anything about Ipi yet.  Good luck and peace be with you.

        Take care,

        Shelly in SW

        Loading spinner

        I can only speak about the B-Raf but I have great news!  After 12 weeks being on it my tumors are still shrinking!  I had lung tumors which were removed but then I metastized to the pleura which are inoperable. 

        I started on the Roche clinical trial here in Switzerland on June 14.  On July 22, first scan, the tumors showed shrinkage.  Yesterday at the 12 week scan they were STILL SHRINKING!  Now I know this is not a cure but it is buying me awesome time. 

        As for the side effects, weird but manageable…

        The first 5 days were a piece of cake but then I started noticing my feet hurting, the bottoms of them.  Then I developed extreme sensitivity to the sun, like immediate feeling of burning and itching.  I developed a rash over the whole body, luckily it did not itch.  Arthritis developed throughout my entire body, so much so that my husband had to help me undress.  And then the doctors here in Switzerland would not met me use Aleve or Ibuprofen…  They gave me Novalgin a drug that the US has banned…  Oh well.  Eventually the arthritis lessened up and the rash went away.  Two times my bottom lip swelled up like Bart Simpson but that also went away.  The arthritis now comes and goes and moves to different parts of my body, nothing I can't deal with. My feet areswollen enough to make shoes feel tight.   I mainly feel it at the end of the day and when I fist wake up.  My doctor says she has seen all of these side effects in other patients as well.  Most days go by without a whole lot of pain.  

        To answer your other question, I was told that I would be on this drug as long as I am responding.  Could that be forever?  Let's hope so!

        I don't know anything about Ipi yet.  Good luck and peace be with you.

        Take care,

        Shelly in SW

        Loading spinner
    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.