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

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

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