If you have been following my cancer journey, then you are probably
well aware of my deep adoration of my amazing oncologists – Dr. George Fisher
and Dr. Holbrook Kohrt (and their fabulous teams). After talking to other
cancer patients, I have come to realize that it is rare to find an oncologist
who is both brilliant and extraordinarily kind. I am so lucky that both of my
oncologists have these qualities in spades. Furthermore, they are aggressive
and creative with my care as well as incredibly responsive. Unfortunately for
them, sometimes they have had to act as my therapist, too. They have both
calmed me down and lifted me up when I’ve been filled with worry and fear. I
owe my life to them and I am grateful every single day that they are my team.
Sometimes I wonder what motivates them to do what they do. Why do they
put themselves in a line of work where they see such suffering? How do they
stay upbeat and dedicated when so many of their patients don’t make it? Who are
these amazing souls?
Interestingly enough, an article that came out on Monday in the NY
Times helps answer that question. I wanted to share this article with you about
Holbrook because I am just so very proud of him. As you will read, he has
beaten the odds to be alive today and he continues to fight so that patients,
like me, can also beat the odds. Thank you, Holbrook and George for holding my
hand and being by my side during this cancer journey. I love you.
A Doctor's Intimate View of Hemophilia
Dr. Holbrook Kohrt is a physician
and researcher who has spent a lifetime as a patient. A 36-year-old hematologist
at the Stanford University School of Medicine, he has an extreme form of hemophilia, the bleeding disease. We spoke about his life and work
for two hours in person, and later by telephone. An edited and condensed
version of the conversations follows.
Hemophilia is thought to be
hereditary. Do other members of your family have it?
No. None. When I was born in
1977, my parents didn’t even know I had it. After circumcision, I bled profusely. And then,
during the first month of life, I kept bleeding. Though my father was a
pediatrician and my mother a nurse, they didn’t even consider hemophilia.
They took me to the hospital,
where the doctors thought my mother was abusing me — I had all these
unexplained bruises. After some testing, it was determined that I had a very
unusual type of hemophilia that comes from a random mutation.
Once that was known, my parents
became centered on taking care of a child with severe hemophilia. So I grew up
in a room that was padded so I wouldn’t bleed to death if I fell. I wore a
helmet every day. There were frequent trips to the children’s hospital for
emergencies, three hours from where we lived, in Lake Wallenpaupack, Pa.
Was it possible to have a normal
childhood under those circumstances?
I wouldn’t say so. We lived in a
small town. Many people there did not understand about hemophilia.
To stay alive, I had to have
transfusions of a blood product — clotting factor — every other day. We had
neighbors who were members of a religion that opposed transfusions. People from
that family would ring our doorbell and scream that we were going to hell.
On the school bus, the others
made fun of me. This got even worse during my adolescence because people first began reading
about AIDS. To uninformed people, AIDS and
hemophilia were the same thing.
To make the situation even worse,
large numbers of hemophiliacs developed H.I.V. At the beginning of the H.I.V.
epidemic, the blood banks didn’t test their donors for the virus. To stay
alive, hemophiliacs often require transfusions of the clotting factor. It’s a
protein that our bodies can’t make naturally, and it’s made up from the blood of
hundreds, perhaps thousands of donors. Well, if one of those donors had H.I.V.,
it could be transmitted to anyone who received the blood product. In those
years, of the severe hemophiliacs, 95 percent died after contracting H.I.V.
from transfusions.
I remember, from the time I was 8
years old, I went to this special summer camp for hemophiliac children. The
first year I attended, there were about 200 campers. Eight years later, they
stopped having the camp altogether because there were just two of us left.
I think that there’s something
very strong about the fact that I was a teenager at the time when all this was
happening. When young kids encounter death, you don’t understand the full
magnitude of it. You experience it, but then you feel like life goes on.
Why didn’t you contract H.I.V.
like the others?
I was lucky. I did, at the age of
13, get hepatitis C, from contaminated blood. I was in
the hospital for two months. And then something truly fortunate occurred. I had
what’s called a “full antibody response,” which means that my immune system
naturally cleared the infection.
Today, happily, the blood
products hemophiliacs take are safer. Scientists have figured out a way to
produce an engineered version of the clotting factor. That means that we don’t
have to go to hundreds of human donors for blood anymore. They take the protein
we need, insert it into the ovary of a tiny hamster and make the clotting
factor from that.
Did your childhood experiences
lead you to become a hematologist?
Oh, absolutely. In my childhood,
it was doctors who I related to more than my peers.
The thing that really attracted
me, though, was seeing translational medicine happen in my lifetime. By the
time I applied to medical school in 2000, the H.I.V. epidemic had become a
chronic disease in the developed world. Breakthroughs in biochemistry promised
the same for hemophilia. I wanted to help with that.
As you recall, I had this
experience where my own immune system had naturally cleared a hepatitis C
infection. I wondered if there might not be ways to get the immune system to
respond to cancer in that same way. Today, that’s the
focus of my research.
Tell us about your research.
A few years ago, I joined the
Stanford laboratory of Ron Levy, who developed the antilymphoma chemotherapy Rituxan. My focus there has been
to try to get it to work better against non-Hodgkin’s lymphoma by adding Rituxan to
another antibody in the hope of finding a combination that attacks the cancer.
The experiment has been to inject
mice with lymphoma, go down a couple days later, give the mice Rituxan, and
then a couple days later, give them whatever molecule I choose. About four
years ago we did this, and we had a whole cage full of mice where the tumor
completely melted away.
Recently, we gave that
combination to a human patient. And now, almost a year later, she has no
evidence of the lymphoma whatsoever. Of
course, one patient isn’t enough to make for a clinical trial. So now we are
going for full-scale trials to show that it is not only effective for lymphoma
but, hopefully, for other cancers, too.
You’ve been doing a clinical
trial in Cuba. Is that for the same therapy?
No. In Cuba, we’ve been taking
little portions of cancer cells — the peptides — and vaccinating patients
against them. Actually, we’ve taken this idea and applied it to cervical cancer in Cuba, ovarian cancer in Australia, leukemia in
Europe, and at Stanford.
Our goal is to ultimately use
this approach to teach transplanted bone marrow what the cancer looks like so
when cancer attempts to come back, the immune system is smart enough to
recognize and attack it.
Why study this in Cuba?
There is a large population of
underserved patients with cervical cancer there. They had doctors there who
wanted to work with us. Right now, we’re in Phase 1 of trials there, which
means that we’re testing for safety and the immune response. Patients who already have
cancer receive the vaccine, and we’ll see if the immune system responds and
mobilizes.
Is there anything about your own
condition that pushes you forward?
Oh, yes, but it’s more
philosophical than physical. I realized early on that I have to do everything I
want to do as soon as possible because I didn’t know what the future could be.
That’s been useful in terms of the research and the science. I have the stamina
and the commitment to keep trying things.
It’s not been so good in terms of
personal relationships. I’ve been married twice. But that knowledge forces me
to take the time I have to give the maximum to science and to my patients.
Research requires great tenacity. When you’ve had a serious illness since
infancy, you know to make the most of every single day.
