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August 17, 2012 at 8:19 pm #55851bettinParticipant
that was just not the news I wanted to hear from you. Let’s hope that the immunotherapy still has some long-term effects as it had before. It’s good though you get back on to BRAFi- at least all this fighting for re-exposure was good for something!
Any chance you could even get the BRAF + MEK combo?
And maybe some local RT to make sure none of the buggers escapes? Do you think you could get some material cut out/ biopsied otherwise? You might want to think about a pre-/ post BRAFi comparison to potentially give you the option of a combination therapy after PD-1….if you found an onc willing to get you on to them that is- and of course all in the hope that you’ll never ever need it anyway.
Love and a big hug-
BAugust 19, 2012 at 7:00 pm #55852jamesaParticipant
I was sorry to read your news. I hope that you can get into a PD1 trial.
If you are not already aware of this info posted by Jonathan, you might find it helpful.
Based on a number of articles published from ASCO about BMS reporting stats on their PD1 trial, Jonathan stated in a post: “the presence of the ligand (PDL1) may be a key indicator of effectiveness;” of the anti-PD1 drug.
Jonathan goes on further to state:
“The statistics reported are that none of the 17 people who had PDL-1 negative tumors responded to anti-PD1, while 9 of the 25 patients (36%) with ligand positive tumors had an objective response (this was a small group of the 300 patients who were also tested for the ligand, so it will have to be confirmed, but that’s a big statistical distinction). So I’d imagine that, if this sort of thing holds up, in the future, they’ll do a biopsy and advise against anti-PD1 therapy if there’s no PD ligand on the tumors.”
Perhaps, if you have not already tested your tissue for PD ligand, maybe you could do that before you put all your hopes into a PD1 trial. Just a thought!!! Time is precious when treatments are limited!!
Wishing you the BEST Pati…if anyone can beat MEL, you can!
JamesAugust 19, 2012 at 8:04 pm #55853NYKarenParticipant
Sending good wishes your way. You’re a terrific lady, and I hope the next round of treatment brings a positive response.
KarenAugust 19, 2012 at 8:53 pm #55854HeinParticipant
You go girl! That’s the P. I got to know and admire: just keep kicking this.
It was you who gave me hope when all of the ‘expert’ professors had allready written me off. You leaded me on to the incrowd here on MIF, all of them ‘experts by experience’ in topnodge melanomatreatment and medical studys. Through your contacts I found NKI in Amsterdam. Most of all you infected me with your courage and willpower. Remember last year this time I maybe had 6 months to live, and look where I am today.
So good for you not backing down now, picking up your courage and determination and return to ‘business as usual’.
HeinAugust 20, 2012 at 1:05 pm #55855debbieVAParticipant
Sending you good vibes, and lifting you with prayer. Be strong in the Lord, never give up hope. Your positive attitude and remarkable keen sense of fighting forward inspire many.
debbieVA Stage 4 2006, NED 2008
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