lung mets

My wife’s oncologist says that if there is a genetic mutation for which there is a drug available
that drug can be used even though it is not specifically approved for cholangiocarcinoma. Lets say there is a mutation found that ALSO can cause a certain type of Breast Cancer. If it is approved for
by the FDA the oncologist can write a script for it and will also help by calling or writing the insurance company.
This is what we were told and this oncologist is much involved with genetic sequencing. He has written a scientific paper which concludes by saying “the future of treatment for cholangiocarcinoma is NOW”. He does not believe biological or genetic treatment is years away. It can only get better but it is starting now.

I would enjoy hearing other opinions, BUT these treatments are coming available NOW. Genetic testing though expensive is paid for or will be paid for by Medicare the Foundation One company has told me. If medicare does not pay for my wife’s testing, for some reason, I was told my wife will NOT be billed at all. If you are not in the medicare age group they still have a discount and payment plan.

As so many people have said on this site, get a second or third opinion. If your oncologist feels that
you have no more chemo options and genetic sequencing won’t do any good go to a center where they have faith in the future of genetic testing. I believe the statistics indicate about 70 % of people will have a mutation for which a drug could then be tried.

One more thing, you may not have to qualify for a clinical study. if your testing shows there is a drug that can combat your specific mutation, it is possible to get it as I mentioned above.

Besides getting” 2-3 opinions” someone told us to “keep fighting”. This means in your life, but
also for the latest medical care! Don’t give up— as we are entering a new era in cancer treatment based on” individualized or personalized” treatment.

If the Lancet article has to do with the BINGO study, I was told by a University of Chicago oncologist that the study did NOT determine beforehand by genetic sequencing what the mutation was for each patient.
Without this information the study is not as reliable as it should be.
Therefore it is important to know if you have the ERGF mutation before using erbitux. If you have a different mutation it makes sense that erbitux is unlikely to work.
Because the study probably included people with many different mutations the study is flawed.
But it does mean that everyone with cc should get genetic sequencing so the MD knows the mutation and pick the right drug for targeting it.
Because cc is uncommon it is likely to be hard to find enough people with exactly the same mutation
to easily do studies

Adding the EGFR inhibitor cetuximab (Erbitux) to standard-of-care chemotherapy for advanced biliary cancer failed to improve patient survival, according to a study published online May 20 in the Lancet Oncology.

Also during the Q & A section at ASCO 2014 in June at Chicago, a doctor who does EGFR mutation research a lot indicated the severity of the RASH response
may not correspond to the effectiveness of the EGFR inhibitor agents.

God bless.

My husband’s doctor wouldn’t let him do it. He has 11 cm lesion in one side of liver with multiple other lesions. He said it would be too dangerous, but I am willing to hear from others about this as well, Diana