I am glad that you think about the next generation gene sequencing(NGS) so important and useful. I think the same way too in the long run but for PRACTICAL purpose, it is not at least for the next few years as far as my understanding on this subject for the last few years is concerned. Again the key word is practical and effective treatment,not just any treatment.
The way you state how to get FDA approval meds for treatment other than the approval intent indication is call " off - label use" is correct., but to get paid by insurance is another story. Patient can also request FDA to approve investigational meds which is not approved in the United States but in Europe for humanitarian use.
Patient can also write to the drug company to join its clinical trial on studies they are conducting now. To increase the chances for trying new meds.
Yes, most of the time,Foundation One will write off the expenses and you are correct on that.
I do not agree with your oncologist's assumption on the usefulness of treatments using NGS that effective treatment is available NOW, but if just means treatment of any kind ,I will agree with that. With regard to using biologicals like the TKI,Monoclonal antibodies, your oncologist is right.
It is the limitation of the usefulness of the NGS rather than other reasons that dictate what I think. Nothing relate to get 2nd or 3rd opinions.
I do have faith in using genetic profile for treating cancer, the timing is just not now though.
I went through the NGS Foundation One report and discuss the result with several oncologists whose names are very familiar with the members of this board and that is how it sums up my current opinion on genetic profiling about cancer in general,
I am a patient of this disease for 5 years, I do not want to give other patients and caregivers false hope on this subject and this is the main reason I response to the above message.
BTW, to keep fighting is a relative term. Nobody would like to give up on his/her life, but if you are the patient, it is difficult to tell your love ones to do otherwise.