Hi!
Here I am!
Tonsillar HPV Cancer
Yup still here and its been alot these past 9 weeks....but Mostly Good!
Guys I was sooooo freaked and now its almost like Its nit real! Its going 2 get Real REAL in Monday buuuut....
Long story short we went 2 the Usual Radiation Consult and we're giving the Standard options 4 Throat and Neck...33 rounds of radiatiin @ 75 gray with 6 rounds of cisplatin chemo or just radiation or radiation chemo and surgery and we were set that that was going to have to happen. Then I went and saw a Surgical Specialist in Portland Oregon, I live in Eugene which is like 2 hours away,and I was given the miracle option of a study, a trial that is being done through UCSD which is a very reputable Medical Center in San Diego University of California San Diego and OHSU which is Oregon Health & Science University. I am to be the last participant in the trial. They've had 28 other people and all of them have gone into remission,to be cancer free. the best part of this is that I will only need to do three treatments of 27 Gray, which is like a third of the radiation and way less than 33 days. Then only two immunotherapies which is not chemotherapy, which is what they're trying to do as a new standard, have immunotherapy replace chemotherapy because the body is a miraculous thing unto its own self. They are learning that immunotherapy within your own body is the best way to heal. I'm doing it with a drug Pembrolizumab? already FDA approved,and the new drug that they're using that is the trial is called Evaporcet.
After I have the three radiations and the two immunotherapies I will have surgery and they will take out my disgusting tumored tonsil and I two lymph nodes in my neck.
Needless to say this course of treatment compared 2 standard treatment is lile the difference between driving your car into a pole at 100 mph or just having a minor fender bender? asvfar as how it's going to have effects on my body.
I could not be more thrilled, If thrilled is a term ine can apply to cancer treatment!
We are extremely hopeful. It raises my mortality rate from 80% to 90%. The fact that everyone else in the trial has done so well is also a good indication.
If it doesn't work out as well as we want I can always go back 4 some standard treatment.
It's super exciting to know that I'm being part of a study in a trial that will one day,hopefully, lead to this treatment being the standard of care for this kind of cancer. Why would we want to give people so much treatment when we don't need too?
I just wanted to share this with everyone and anyone who's going through all this. Sending out the best healing helpful Vibes. Wherever you are in your journey know that whatever you're feeling is warranted. It's a lot! From day one I was freaking out not knowing what was going to happen to feeling right now almost like an imposter because I don't feel sick all really. Like a lot of people say when they have cancer "I don't feel sick".Y am I going to go and put all these things that can make me sick into my body? Crazy!.. but I am trusting in the process and I will keep you posted on my trial.
I'm very very fortunate. I know some other people, especially a friend of ours right now who was in a trial and he was not as fortunate I'm thankful and I want to share this with the community. Have open mind, we didn't necissarily have an open mind at first, but we dud alot if research and checked in with as many experts as we could. Now my mind is open but you really have to talk to a lot of people. I had my oncology consult after the trial consult and the oncologist point blank said "Do the trial, that is what i would do 4 me , my wife and my kids." u 4 us after that we pretty much knew we were on the right path 4 us.
It's still a lot and you can Never fully know what will be the best u just have to make a choice and don't second guess yourself and just keep going.
Sending only love to everyone out there and wishing everyone the best.
Ill keep you posted... starting treatment on Monday June 8th!
