Hi there muddyb00ts -- I've been following your story and would like to share my family's experience, if it helps.
My dad is battling Stage 3 HPV
-related throat/tonsil cancer, so I'm coming from the perspective of a family member who's not involved in his daily care (I'm in NC). He lives in Stuart, Florida. He was on a series of chemo and radiation. Primarily radiation. Tried some Erbitux
(a type of chemo using monoclonal antibodies) but he had a severe allergic reaction and had to discontinue.
His local resources have been hit or miss and he's had to travel to bigger cities (U of Miami) when he's run into issues. A few months ago, he experienced major throat hemorrhaging, as the radiation had destroyed a lot of tissue in his throat and it had turned necrotic and was bleeding profusely. He was rushed to the ER, and his local ENT -- who had never dealt with his type of throat cancer (HPV
), nor had dealt with necrosis of the throat -- suggested that he move into hospice, as he night be out of options. We were all frustrated with this doctor's mindset and his recommendation to just give up.
However, after traveling to U of Miami to see a highly experienced ENT who's very familiar with his type of cancer, he was directed to start hyperbaric oxygen therapy to help heal the necrotic tissues (and also help his ability to eat and talk -- both compromised). It is starting to help, although slowly.
I say all this to recommend that you find a head/neck-specific oncologist (or even an experienced ENT who's dealt with your type of cancer and can direct you to preferred oncologists). You need someone to believe that you can move forward and have a good quality of life for as long as possible -- and can develop a plan to help you do that.
I don't think it would hurt to meet with someone who's seen a ton of tongue cancers -- maybe at a larger city -- and they can consult with your local resources. Cancer still kills tons of people. There are no established ways to cure it - it's still a moving target. So, you have to work with people who have seen/done more in the cancer field.
Just my opinion as a family member, so take it with all the grains of salt. But I'm rooting for you - and I want you to find good information and a plan that makes you feel hopeful/strong.
Take care -- and please let us know how you're doing. Wishing you all the best!