Hi everyone,
Well, maybe there's some good news. Traditional solutions for stage 4
lung cancer are not good but on the cutting edge of technology it looks
much better. Below is a letter I sent to a former employer explaining my
current status. The bottom line is that I think I have figured out the
best science based treatment that has ever been tried for my specific
kind of lung cancer and that means, if I'm right, that I have more time
that I thought.
Also - you can follow me on Twitter @mperkel
Hi Cindy,
Please share this with EFF Staff and others. First I'd like to thank you
for including me in the EFF staff group photo. That was very meaningful
to me. It was great spending time with everyone at the Pioneer Awards.
So, the good news - it looks like there's a good chance I'm going to be
around longer that I originally thought. Compressing a long story with a
lot of adventure, traditional cancer therapies offered me very little.
So I went to MD Anderson in Texas which is considered to be the nations
most advanced research hospital. While I was traveling there some of
Kaiser's tests came in that showed I had a very rare genetic profile in
the cancer called RET fusion mutation. And it so happens that MDA had a
phase 1 trial of a drug combination that had only been tried on 9 people
on the planet so far but had 100% response. (response is tumor shrinkage).
Although this was what looked like the ideal treatment - just 2 pills -
no chemo - actually getting the treatment was challenging and a long
story that was a hard fought battle. But in the end I got Kaiser to
prescribe these same 2 drugs, not as part of a study, and because of
that I don't have to travel monthly to Texas to get this treatment nor
endure drug escalation experiments of the phase 1 trial. And I can mix
in a few other ideas in the plan without messing up anyone's data. So I
got what I want and I got it on my terms. One thing that I did find out
is a darker side of the cancer industry where MDA's interests were
focused mostly on the billing issues and were willing to hold my life
hostage to get money. But that was the aspect that I leveraged to get
the treatment and on my own terms.
The treatment consists of 2 pills, Vandetanib in Combination with
Everolimus. Vandetanib (Caprelsa) is a thyroid cancer drug that targets
the same RET fusion I have in my lung cancer, and is much more common in
thyroid cancer. Everolimus (Afinitor) is a more interesting drug. it's
in a class called mTor inhibitors which is the same kind of drugs being
researched for cellular epigenetic regeneration to reverse old age at
the cellular level.
I share a theory with some others on the cutting age of both the cancer
and anti-aging community that the biggest risk factor for cancer is old
age. And the cure for cancer will be in most part the cure for aging and
cancer, along with diabetes, Alzheimer, and other age related diseases
will be cured at the same time. So the idea that one of the magic drugs
happened to be an anti-aging drug was in line with this theory. Although
Afinitor has too many side effects to be used as a nutritional
supplement, because I'm lucky enough to have cancer I get drugs that
other people don't have access to.
While I was waiting for access to this treatment (it took 3 weeks) I
started doing my own research to put together my own drug cocktail in
the mean time. Because of all the rules and regulations in the medical
world they have to move far more slowly than optimal. But there are a
lot of papers online as to the kinds of things they are looking at
trying next. And because of the way I think outside the box and my lack
of limitations, the likelihood that I could create a superior outcome
compared to short term certain death is rather high. And in comparison
to what traditional therapies offer there is really no additional risk.
One thing that I noticed was that all the experimental substances in the
anti-aging world were also the cutting edge experimental substances in
the cancer world. The leading mind in the anti-aging world is a guy
named Dr. David Sinclair, who became famous for discovering the
Resveritrol molecule in red wine. Since then he has come up with several
more powerful substances and no Glaxo Smith Kline has got 3/4 of a
billion dollars invested in his work and some of his latest stuff is in
human trials now. He expects to be able to kick the age limit up for 80
to 120 years.
Some of his intermediate work since Resveritrol is now available on
Amazon without a prescription. One combination of 2 substances he's
working on is Pterostilbene and Nicotinamide Riboside. One is a
metabolic enhancer and the other is an mTor inhibitor, like Afinitor,
that trigger the Surtuin enzymes that are responsible for epigenitic
regeneration. Quite frankly, anyone over 45 years old should be taking
these two drugs for their age reversing and disease prevention effects.
And these 2 substances are all over the place in NIH studies for new
cancer treatments for a variety of age related cancers.
After starting to take the Amazon drugs I did notice that I'm coughing
up less stuff and when I started talking the prescribed drugs there
seemed to be another reduction in mucus production. And that might be a
good sign. So I am now talking all 4 drugs in combination, and if I'm
right this is the most effective treatment for my specific lung cancer
ever used. And it made enough sense to talk my oncologist into giving it
a try.
At this point I'm optimistic that I have kicked the can down the road
and that it's now years and not months. If I get 2 years out of this I'm
calling it a win. And - I might be dead wrong, it might not work, and
unexpectedly dropping dead is a side effect of Vandetanib. But even if
that happened - this is still my best choice. In my battle against
cancer, round one goes to me.
Ultimately in a battle which includes certain death the only variable is
the quality of the battle. I'm beginning to relate to Klingons in Star
Trek in that the fight is as important as the outcome. And this is the
kind of fight that represents who I am and how my final adventure plays
out. And in some ways defeating the hospital an insurance bureaucracy is
probably tougher that figuring out how to cure cancer. So the idea of me
beating this is very unlikely, but as Elon Musk would say, "Success is
at least one of the possible outcomes."
Now I'm off to learn more of the big medical words to prepare for round
2. How hard can it be?
So - just wanted to share my possible good news and hopefully I will be
around to be at 2 more Pioneer Awards in the future. That's my new
working estimate.
Marc Perkel
/root
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