ned or stable?

Posted By
Anonymous
5/26/2014 5:45pm
Activity
Replies: 3

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?

Teochasse - (5/26/2014 - 6:38pm)

NED and stable are two different things.NED means that there are no traces of cancer currently being detected.NED does not mean that one is cancer free.One could be NED and still have microscopic disease that had not progressed quite yet.NED could mean one is cancer totally  free, too.There is simply no way to know.Melanoma cells  can  remain latent  in the human body for many years and turn up much later.Stable means that there is measurable disease that had not grown/increased .As for treatments,melanoma is a very individual cancer,unfortunately.What treatment  worked for one patient,might not work for another.There is no standard protocol,just general  oulines to be followed.It pretty much depends on your genetic make up much more so than enviromental  or any other factors.

Teodora Chasse

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."