Well, I suffered through 6 cycles of Carbo/Alimta, and 2 cycles of Alimta but still with rapid progression of my cancer. My PET scan at end of June was stable and then I felt more SOB and cough in past 2-3 wks and my CT this week showed progression (in just less than 6 wks) that has caused obstruction of my LLL. I had biopsy in 12/2013 which was neg for T790M and recently sent to Stanford to check for PDL 1 and it was negative. I am very curious as to what is the cause of my resistance - could I have Met amplification? should I pursue in getting my tissue sequenced to see if there are any other treatable mutations? I can get into trial of Docetaxel vs MPDL (without being positive for PDL 1) which I am leaning towards. but if I can find out what mutation I have, then I can get a more specific treatment.
thanks
ssflxl
Reply # - August 15, 2014, 09:15 PM
Reply To: bad news
I'm sorry for those disappointing results.
Remember that if 60% of people with an EGFR mutation and acquired resistance have a T790M mutation, that means 40% don't. Aside from MET amplification, which is seen in about 5-10% of cases of acquired resistance to EGFR TKIs but doesn't have a clearly effective treatment, there really aren't other identified mechanisms of resistance, and certainly none with an identifiable treatment. You can certainly go on a fishing expedition with genomic testing, but the odds are quite low that there will be a treatment with a significant probability of response and strong clinical benefit.
I would just be wary about putting too much faith in molecular testing as always being able to provide a miraculous treatment. That's simply not what happens in the majority of cases. I fear there's an irrational exuberance about this testing.
-Dr. West
Reply # - August 15, 2014, 09:33 PM
Reply To: bad news
thank you Dr. West. It is natural for us to want to know what mutation we have. if there isn't anything targetable, then I would be satisfied and go for the Docetaxel vs MPDL trial.
thanks
ssflxl
Reply # - August 16, 2014, 11:34 AM
Reply To: bad news
Hi ssflxl,
I'm sorry to hear of your progression. I will hope that alimta was just not the right drug for you, and that your next regimen will be both effective and tolerable.
JimC
Forum moderator
Reply # - August 16, 2014, 04:16 PM
Reply To: bad news
Hi ssflxl, I am sorry too on learning of your progression and the ineffectiveness of Alimta/platin. With promising new drugs in the pipeline, I believe it is reasonable to be hopeful there is one out there that would work for you.
Thanks for sharing your journey. I have been following your case with added interest as my wife is going through a similar path of using Tarceva ( Iressa, in my wife's case) long term with several radiation therapy for local control.
Take care.
NJ