New treatments and trials for head and neck cancer (especially HPV+)

A couple people mentioned in my Back In The Saddle thread that they'd be interested in some of the information I've discovered about new treatments for head and neck cancer. I'm in an interesting position because while I can have approved treatments for either lung cancer OR head and neck cancer (both HPV+ squamous cell), for clinical trials I will probably only be considered to have head and neck cancer (metastasized). So most of my research has centered around head and neck cancer trials, and specifically around squamous cell carcinoma or, where possible, HPV+ SCC.

I have a blog where I created a couple quick posts that describe the different drug types, immunotherapies, and a bit about clinical trials. 

There doesn't seem to have been too much research yet into targetable mutations in head and neck cancer. In lung cancer, for example, EGFR and ALK mutations have been indentified and the targeted treatments work so well they were approved as first-line treatments instead of chemo-radiation for patients whose cancer analysis showed those mutations. In head and neck cancer, the clinical trials are just being started or considered and the mutations are just being discovered. Here's a handy chart of some of the mutations, the percentage of time they seem to occur in HPV- vs. HPV+ head and neck cancers, and drugs in trials that target them. The only way to know if these drugs would help you is to have genetic sequencing done on a biopsy sample.

For head and neck cancer, there has been more research into immunotherapy. I found this page really handy as a summary of the different trials and approaches available. I've decided to enter a combination trial of Opdivo (an anti-PD1 antibody that stops one way cancer can "fool" your immune system) and a second agent that helps counter the cancer's ability to slow down your immune system. Opdivo's phase II trial for head and neck cancer was so clearly successful that it was terminated and labeled a "breakthrough therapy." Keep in mind that this is for metastatic, recurrent disease at this point, where success is measured in "progression-free survival" rather than "cure." The drug Keytruda is also an anti-PD-1 antibody. Opdivo's success rate is around 20% and Keytruda's is slightly higher at around 23%. When you combine them with a second agent, however, these success rates can go up to 35% or sometimes even higher. The serious side effect potential also increases, though. Anyone with metastatic head and neck cancer should be able to find a trial going near you so you can get access to Opdivo, Keytruda, or one of the other new immunotherapy drugs being tested.

There's one really interesting and promising trial I wanted to share. In Houston, this trial harvests T-cells from your body, makes them more effective, grows more of them, then gives them back to you as treatments. It's a phase 1 trial (open only to HPV+ patients) so there are no results from it, but a similar trial targeting cancers caused by Epstein-Barr virus had astonishing results: 50% of the patients in the trial responded with complete remission, unheard of for immunotherapy as well as for metastatic cancer in general. I've been accepted into that trial and am doing the blood draw now for them to grow my T-cells. I won't be injected with them until I complete the combination trial though (which hopefully won't be for a long, long time, if the combination of drugs works for me). There are other similar trials going on around the country.

I would encourage anyone dealing with metastatic disease to research clinical trials. There are organizations that can help you if your doctors can't or won't. SPOHNC has a clinical trial navigation service, for example. Some trials don't require a lot of travel--for example, I am doing the blood draw for Houston locally and when I am ready for injections, the first stay is a week and after that I would only have to travel there every six weeks for a single day. These treatments don't help every patient, unfortunately... but they do offer hope. There are people with metastatic disease who were in phase 1 trials for Opdivo and Keytruda who are still on the drugs with stable or reduced tumor load after 3-4 years. Side effects for immune therapies tend to be much lower and more tolerable than chemo.

While I'm far from being an expert (understatement!) I'd be glad to answer any questions I can or point you toward some of the resources I've discovered.