ned or stable?

Posted By
Anonymous
5/26/2014 5:45pm
Activity
Replies: 2

I was just wondering how many of you are either ned or stable? What Treatment worked for you? Just wondering how successful treatments actually are?

JerryfromFauq - (5/27/2014 - 3:37am)

I'm essentially stable.  Been so for all except three months since going to stage IV in Feb 2007.  Having a very slight reduction in my innumerable tumor load over the past 5 years.  What has worked for me?  IL-2 which helps 20-23% of people held me stable for 20 months and removed the liver tumors.  Since I have one of the C-kit DNA mutations, Gleevec (the first targeted chemo for any cancer) has held me stable for over 5 years now, even though it is not yet FDA approved for Melanoma patients.  The clinical trial definition for having a partial response is for one to have a 25-30% or greater reduction in tumor load from ones treatments.  Going by that definition all of my treatments have been failures.  Seeing how I was given 30-180 days to remain alive in Feb 2007,  what definition do you want to use for success?  I'm still quite functional, even if not NED (No Evidence of Disease - on scans) during this 7-12 years since I started complaining to my GP.

I'm me, not a statistic. Praying to not be one for years yet.

Bruce Davis - (5/27/2014 - 8:08pm)

Feel fortunate to have been stable for a good part of 33 months. 1st CT scan must have been a few months after starting Zelboraf in Sept.of 2011. Largest of nodules in lungs went from 4 cm to 4 mm and several others shrunk, have stayed the same since.

As I understand about 50% of people with 4th stage melanoma have the required Braf+ (bio marker) required for Zelboraf. 

 

 

 

Presently it's "Don't give up."