I'm wondering how physicians are choosing second line inhibitors. I received Xalkori as first line treatment for ALK+ NSCLC. Resistance occurred after ten months. I live in a place where LDK, Chugai and Ariad clinical trials are all available. I'm now receiving LDK but never received a satisfactory answer as to why LDK was chosen over the others. "There isn't much data on Ariad." "If you think the LDK trial is rigorous, you should see Chugai's". Naturally my biggest concern is/was that by receiving LDK, the other two options are now off the table. What's done is done, as they say, but it still makes me uneasy when I read things like "My doctor said she thought that the best responses were coming from Chugai and Ariad over LDK." So exactly how are doctors making these decisions?? Hard data? Personal experience? Eeny, meeny, miny, moe? Looking at LC forums, it seems to be all over the place - why are some receiving Ariad over LDK over Chugai - is there a rhyme or reason?
Decision Making - 1258510
giovanna
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Reply # - August 7, 2013, 10:09 PM
Reply To: Decision Making
There is no evidence to choose one over another. It really comes down to an individual doctor's judgment, so you would need to speak to your own doctor about the recommendation of one over another. But there are no rules and no remote consensus.
-Dr. West
Reply # - August 8, 2013, 06:38 AM
Reply To: Decision Making
This is why clinical trials are done - to learn the answer. Part of both treating and coping with this cancer, is learning to become comfortable with uncertainty. The majority of patients cannot enroll in clinical trials due to medical eligibility or logistical reasons, so I think that enrolling onto any clinical trial is an accomplishment to be proud of. Remember you are helping to provide answers for patients just like yourself in years to come. We would not know anything about markers like ALK or EGFR today, if not for courageous and caring participants in clinical trials like you.
Reply # - August 29, 2013, 01:37 PM
Reply To: Decision Making
Hi Giovanna,
You've very fortunate to be in an area where cutting edge trials are offered, and to have a doctor who seems knowledgeable about clinical trials. As Dr. Creelan said, to be able to enroll can be quite a feat for most patients.
I've participated in a number of trials and my regular oncologist is not a lung specialist; for the most part I've had to be my own advocate - informing them of what's available/desirable vs. what's actionable. If one is inclined to be part of the decision-making, all one can really do is search for/read the data available on all the therapies and come up with what sounds "appealing". This often comes down to side effect profile, treatment difficulty, and often how well one might think they'll respond based on available data. However, no matter how educated one becomes about our particular disease/situation, we're not doctors... we may never know the multitude of subtleties that go into their decisions, even if we ask. It's a leap, I know, and often frustrating, but the point at which we have to rely on their knowledge is where the trust has to be. And with all trials, there's always the problem of availability at the time one needs them... I'm currently on a long waiting list for my desired trial, so now have to consider another trial which may or may not work, but it's Phase 2 and my insurer is willing to cover it (but not Phase 1 trials). Bottom line, sometimes it's a crap shoot.
Best of luck on LDK - I hope you get a long run out of it.
Jazz