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Re: Newly diagnosed Stage IV, just started Dacarbazine – Im …

    Kim K

      Sorry you joined us in the Stage IV club.

      I would wait until the scans because you actually may be one of the few responders to DTIC.  I looked at that trial and declined it becuase to me, IL-2 would have been a better "placebo" or control arm.  It wasn't because it would probably be too difficult to get approval comparing a drug to an immunotherapy versus a drug to drug comparison.

      Just stick with it until you have more information, you can always opt out later or try high dose IL-2.  I did the IL-2 and was a complete responder.  I had minimal disease, a slow progression, and only one mass left in my chest muscle which was small.  In addition, I have been developing delayed T-cell mediated allergies.  I think all those factors, plus an immune system looking for something to go after (other than myself) is why I was lucky enough to join the 6% club.

      I was stage IIA in 2002, and became stage IV in 2009.  VATS lung surgery Feb. this year and also BRAF pos.  I chose high dose IL-2 for the above reasons in addition to the fact it still is the only drug that can give me a small chance for a durable remission ex. decades!  DTIC has a few as well but the complete responders tend to recur more often than the complete responders to IL-2.  (6% CR with IL-2, of which 60% are still alive and setting the median survival.  One person is out 22 years without a recurrence!).  It is tough but doable.  It only takes a short period of time to go through treatment as well vs. several cycles of chemo.  IL-2 either works or it dosen't.  BRAF inhibitors must be taken continuously and so far don't cross the blood brain barrier.  It will be my back-up plan if I recur, or more IL-2….

      Best of luck, glad you seem to be responding.  Wait until you have your info first before making any decisions.  Scanxiety is normal, sucks, but will get better with time…. lots of time….


      Kim (42 and single mom of 2 girls – aged 2 & 5).  I am in Hawaii.

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