Hi Jamos

Sorry for the late reply but have been offline for the past couple of weeks and am just catching up.

I appreciate and understand your dilemma regarding choice between "standard of care" - cisplatin (CIS) and "new kid on the block" -Erbitux (cetuximab - CTX).

Alex and I faced the same dilemma and although we opted for CIS because it was the devil we knew at the time (long term results for CTX were not available), I think our decision may have been different if the CTX results had been available and we had been offered a clinical trial.

CTX IS proven as initial treatment in head and neck cancer and IS indicated for use in your situation although your US guidelines may only recommend it for use in patients for whom CIS is not an option (someone might chime in here and clarify please?). CTX has been used for years in other cancers and was first used in H&N for metastatic and recurrent cancer. This is fairly standard for new treatments to be tried in "difficult" patients.

Whilst CTX has been shown to be effective in head and neck cancer, there are less data than CIS in initial treatment and the scientists/clinicians don't know which is the more effective because they have never been compared. RTOG 1016 is designed to compare the two treatments in terms of effectiveness and side effects.

The advantage of entering a clinical trial is that you will be more closely monitored than the general population and I think the trial funders will pay for the tests that are required (they do in Australia anyway). Generally speaking, people who are in clinical trials do better because of this as there is less tendency for your issues to slip through the cracks.

Remember too, that if you enter the trial, there is an equal chance you will end up on CIS as CTX so you need to be comfortable with either treatment.

Again, I appreciate your dilemma as you need to look to preserving your own future but please consider the advantages of being followed up and monitored with all the latest tests and scans. Also, talk to your doctor to understand your options if you were to be allocated to one treatment arm and don't do well. Find out how they will be monitoring you early in treatment and under what circumstances might they withdraw you from the trial. The answer may reassure you. Your doctors are obliged to treat you and there will be a clause in the protocol that details how to proceed should you need to withdraw from the allocated treatment for any reason. They cannot make you continue in the study if you think you are not doing well. You can withdraw your consent at any time, exit the trial and continue with treatment as negotiated by you and your doctor.

Do the patients get to know what the treatment is once it has been allocated (your doctor might have described this as open label)?