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In March 2010 I started in a phase 2 clinical trial of what would become vemurafenib, Zelboraf. That was followed by a follow on study that I still participate in. In December 2010 my PET/CT scans stopped showing any hypermetabolic activity and the two lung tumors that show on CT, stopped shrinking in February 2012. Ever since February 2012 the tumors have not changed and my doctor believes what shows on the scans could be scar tissue.
We are now contemplating stopping medication. I’m looking for any comments from others that have been on vemurafenib and stopped due to being NED.
Well I pulled the plug, I am no longer taking vemurafenib. My doctor is very certain that what shows on the scans is scar tissue, so sure, they do not do biopsies in similar cases to confirm any more.
I’ve been very lucky with the long term results and drug tolerance I’ve had. There is a risk of developing drug resistance. If having stopped and there is a recurrence I can go back on the drug. If I stayed and it became resistant, I would need to find another drug.
I will continue with a schedule of three month checkups with her as well as three month full derm exams. Also, for the first year, scans very three months instead of the current six month scan schedule.
That’s wonderful, Dick!!! Sorry no one answered you, but I think you are blazing a trail here!! Quite a number on this board have dealt with your conundrum – still having “something” on scan – but making the decision that the “what’s its” are no longer active tumors – and then being faced with making the decision of whether or not to continue IMMUNOTHERAPY. Many have to good effect. I am very hopeful that you will share their experience in regard to targeted therapy! Thanks for sharing and keep us posted. May you continue to be NEAD for years and years and years!!!
PS I still smile when I think of your sock story!!! Love, celese
Just realized I was not very clear! (Nor can I spell my name!! HA!) At any rate, I mean folks have made the decision to stop immunotherapy despite a ditzel, determined to no longer be an active tumor, with good effect! c
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