Hello Glenn,

As far as your genetic testing requested, there more likely is benefit for research purposes I would think, rather than helping you personally. As to your concerns about the money grab and government digging etc. probably all are true also, but I don't believe any of us thinks we have privacy anymore. Evildoers will always be there seeking more.
Radiation has a cumulative effect, that is, there are limits over our lifetimes to a maximum accumulated dose, after which a medical physicist involved in your care will decide with your care team of physicians that you should not receive anymore treatments. After that, only diagnostic studies will be allowed to evaluate progression or hopefully resolution.

For me personally, after 103 radiation treatments, close to 30 chemotherapy doses and one surgery I was told that I could not expect any further surgical intervention, nor radiation treatment. That leaves only some sort of systemic therapy if the disease persists or advances. I have tried and recently stopped 2 separate immunotherapy trials after continued progression. Radiation effects and surgical scarring are what makes the doctors reluctant to intervene now because there might be greater harm than good done. I am less able to heal now because the body has been through so much. I learned all these thing over time that weren't expected of course, because at the very beginning after diagnosis I was told there was a 60-70% change of "getting it", but at this point I fall into a category of limited options going forward.

I hope this helps you in your decisions and wish you all the best. One thing I've learned to appreciate (and I have worked in hospitals for over thirty years myself) is the unbounded kindness of others trying to help.There's always something to be grateful for. Good luck.


HPV 16 positive October 2020.
Since diagnosis, have had 3 courses of radiation therapy, including IMRT, and chemotherapy, as well as one immunotherapy/trial that possibly caused locked jaw and was stopped.
I am currently in second/new immunotherapy trail (2/2023)
I had neck lymph nodes removed surgically (6/2021)
I have a chest port.
I now have PEG tube, February, 2023 after a failed swallow study and am NPO. Weight loss 145 lbs.
Married 36 years, two great chidden and wife are all supportive.