>> My tumor is about the size of a hockey puck.
I was 28 years old when I was diagnosed.
Within three days of diagnosis, I had my craniotomy.
Common side effects of a craniotomy is seizures.
I take pills six times a day.
It's two of these, one and a half of these,
two of these,
>> Carlos first came to us 10 years ago,
with a low grade astrocytoma, which we removed surgically.
He did beautifully.
With the follow up though, we saw that gradually
the tumor was progressing and coming back
>> When we reached 2015, the tumor had reached to a point
where it was dangerously impacting the ventricles
within my brain.
And I really was going to be faced, within the next year,
of two options.
Having another craniotomy,
although it wouldn't have been nearly as effective,
because they would've had to cut out
quite a bit of brain tissue.
Radiation was the other option,
but since my tumor is so large,
they would've been radiating so much brain tissue,
I could've been left with virtually no short term memory,
because that's a common side effect.
That's when my neuro-oncologist, Dr Luterra,
brought forth this idea of a clinical trial,
that he believed in because
he believed in the science behind the trial.
Did they have some idea that the IDH1 mutation existed
and they were looking for it,
or is it just some byproduct of another experiment?
>> IDH1 mutation and its high association with brain tumors
was originally reported in 2009.
That was the year your tumor was discovered
and so as we're watching your tumor grow,
on pins and needles in some respects,
trying to make decisions about
when are we going to treat this,
how are we going to treat it,
then all the science leads to the discovery of drugs
that inhibit the function of this mutation.
>> This was really a key that needed to be chased
in the medical community.
Using the MRI's and the MRS and the blood work,
they would be able to see, at least whether or not
their drug was getting through to the brain.
So, I definitely felt as if no matter what,
if it didn't help me, they were going to learn from it.
>> Carlos is a great example of what motivates us
and that is that a new treatment was designed
and we were hoping that it would at least
stop the progression of the tumor,
but instead what we found is
it really caused a major benefit
and it cause the tumor to shrink away.
>> When they had their neurological conference,
they showed my brain and the change,
because my change has been the biggest.
>> It's really, really exciting.
You know, we have a very active experimental
brain tumor program here, we test numerous medications.
To see this is just really satisfying,
for both scientifically,
in terms of what this means
and how it can be developed further,
but also, you know, for Carlos.
>> I'm trying to fight.
I've always said to all my doctors,
that I'm willing to do whatever they want.
It was the idea that they would, eventually,
develop an effective drug
that would help people with my condition.
Like, there was justification with my tumor,
like it did something for people.
>> Malignant brain tumors are a devastating disease
and we have devoted our lives to finding better treatment
and giving the best possible treatment to the patients.
Over the last 10 years, we've seen the median survival
more than double.
If we can do that again and again and again,
it's our hope that we can turn these terrible tumors
into a manageable problem,
that people can live a normal life with.
>> Knowing myself, I'm not gonna stop living
the way I'm living.
I don't think about any long-term consequences.
There's no evidence that the astrocytomal cells
may not still mutate.
So now, in this moment, I wanna live and not just exist.
And for those of you like me,
there's a way for each of us to live.
Know that your health and differences are an advantage
and a challenge, that few you know have faced.
(relaxing music)
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