Brain Tumor Treatment | Advances Over 10 Years: Carlos Luceno’s Story

Brain Tumor Treatment | Advances Over 10 Years: Carlos Luceno’s Story


>>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) (wind)

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