Jeff - didn't hear from you so I suspect you are on a path to more information at City of Hope. The PDL-1 immune checkpoint inhibitors that you referenced earlier are the hot topic of immunotherapy at every meeting I go to. While they do not work 100% of the time, the group that they did work in have had durable, robust remissions of their disease. I watched these go through their initial trials in my position at the NCI on the H&N Immunotherapy Oversight Committee. The people in the clinical trials were all in pretty tough shape. They had failed initial treatment or were in recurrence after being treated with both radiation and chemo, (which most had Cisplatin and many had in addition to the EGFR inhibitor Erbitux). This would be a typical population for a drug that was in early stage trials where dosing and other things were not fully understood. So when you see a large group of individuals, who are in such deep water, respond so well to something which is really just letting your immune system see a tumor that was not visible to it before, you know this is an important advancement. Why your current doctors (who surly have heard of these PDL-1 drugs, because of their breakthrough path that they exploit) have not moved you further down the field at this point in time I find baffling, other than some institutions and some doctors are resistant to using new modalities until they have lots of years of data behind them. From a patients standpoint if they have gotten proper releases from you as to the possible side effects and you are good with them, and these have now had the blessing of the FDA, there should be no reason for them not to proceed. Remember they do not work in everyone, but at this stage of things choices are not plentiful for you, and doing nothing surely is not an option.

Speaking of the old school conventional options; resection surgery, likely done laparoscopically so it is minimally invasive, and RFA (radio frequency ablation) also minimally invasive, but not so much fun to have done, they have their champions. And as some on this board have found they can be succesful. The trick here, whether you are cutting something out, or cooking it to death with a needle connected to radio waves, is to get all the surrounding cells that are part and parcel of tumors, as some dysplasia and malignant cells might not be within the main tumor mass itself. Hence the too often need for a second go around with these modalities when those small things prosper into something of more substance.

Whatever path you choose, I urge you to not delay, to be your own advocate and push for action in some direction. Remember that while lung involvement can be critical on its own, the highly vascularized nature of the lungs makes them a ideal place for mets to spread to other vital parts of the body. In all this time in not your friend.

I want you to know that you know that whatever contacts I have, whatever information I can give you to help you make a decision, whomever I can call on your behalf, I will. I do not have a world of influence, but the little that I have as a non doctor advocate, I will certainly apply on your behalf if you wish it. We are all wishing you the best possible outcome from this.



Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.