From Computer Tyme Support Wiki
So far I am still doing well. I'm reasonably healthy under the circumstances and should be around for some time.
As I said last time, my initial treatment stopped working. The next step was to get a previous biopsy sample tested for PD-L1 biomarker and if I had it then I was a good candidate for immunotherapy drugs that can unmask the cancer so that the immune system sees it. Unfortunately, I do not have the biomarker. But all is not lost as I will explain below.
I also got a new blood biopsy test from Guardant Health which is able to test cancer genetics from a blood sample. And the results were interesting. It appears that my first treatment that I came up with, which targeted cancer with RET fusion mutation, was actually completely successful. I no longer have RET fusion based cancer. However apparently I has cancer which lacked RET fusion. And the idea of playing genetic whack-a-mole isn't going to work long term.
At that point my oncologist who is very sharp and knows that I'm not going to do a treatment unless it's likely to work said he had nothing for me. He said I should let him know if I come up with any ideas. He still thinks my cancer is slow growing and that's his intuitive guess based on years of experience. So that's the best guess on the table.
So - having an illness that's nearly 100% fatal and the smart oncologists having nothing to offer me is somewhat discouraging, being that I'm not even a doctor. So I wondered if my only option was to run out the clock.
Immunotherapy was always my second choice and I had always known that my first treatment wasn't going to last very long anyway. But I thought it would last longer than it did. The current immunotherapy focuses on unmasking the cancer by inhibiting PD-L1 to unmask and expose the cancer. But what if there were a different way to unmask the cancer? If so - immunotherapy might work.
Then I found it .....
Another way to unmask the cancer is to kill some of it and expose dead and dying cancer to the immune system. One common was is using radiation. This triggers what is known as the "Abscopal Effect". The immune system learns the cancer and attacks it everywhere leading to at least long term stable and possibly complete cure. This effect has been observed for more than 50 year but lately they are seeing it more often where radiation and immune boosters are combined.
The literature on it is compelling and radiation can substitute for checkpoint inhibitors, and maybe even be better because radiation kills all the cancer and not just some of it. So I thought - can I deliberately trigger the abscopal effect? And that's my new plan.
This is the plan in detail.
And - if any of you want to research this and have ideas - I'm interested in suggestions.
What I'm seeing is the combination of radiation at the same time as immune boosters being the basis. But I think the application of the radiation is important. The idea is not to try to kill the tumor but wound it in a way that healthy tumor is next to dead and dying tumor so that the T cells can "taste" the cancer and create a vaccine inside my body that will then go out and attack all forms of my cancer everywhere. So I'm looking for a nonstandard radiation protocol to try to trigger this. And if my first attempt fails, I can keep trying till I get it right. Once I hit the right combination, I win.
My oncologist thinks this is a really good plan. I also have the radiologist on board as well as an immunologist. I am scheduled to get calibrated for radiation next Friday. Still working on the choice of drug(s), specific timing, and the radiation geometry, dosage, and fractions. Leaning towards Opdivo and possibly Yervoy and Interferon. I'm thinking a double cone shaped pattern of 5 doses at 6gy, but I might just leave the specifics to the radiologist.
In theory I shouldn't have a lot of side effects. Since the radiation will be applied to the center of my biggest tumor the collateral damage will still be inside the tumor. And I'll be taking the immunotherapy drugs for a much shorter time than usual. So I should be fine.
I have to say I can not say enough good things about Kaiser. The service I'm getting is beyond excellent and who lets the patient who isn't a doctor design their own custom cancer treatments? If not for their cooperation, I might have to try to buy Plutonium on Craigslist or something to get treated.
Realistically, although this is a really good plan, there is no way to evaluate how likely it is to succeed. On one hand it seems like it should work. But it might not work for me. Or - there may be some unknown factor that I'm missing. However - it does give me the illusion I'm back in the battle and give me an opportunity to brag about my brilliant idea, as bragging is very important to me. But no one should assume that I'm going to beat this. The odds are still heavily against me.
But - so far so good. Most people in my situation are already dead and very few are still vertical. I'm still feeling pretty good and I'm doing well right now. And I appreciate all of you who have gone out of your way to make my life easier. And remember, I'm never going to have to live in a world without me in it. So it is me who feels sorry for all of you.
Thanks for being my friends,