Wednesday, December 25, 2013

My Phenomenal Oncologists


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.

Tuesday, December 10, 2013

Surgery #13...and #14

I'm exhausted tonight, so I'm just going to give you all the basic facts. Yesterday's surgery (to put the stent in my kidney) did not go well. The tumor was pressing so hard on the ureter that they were unable to put the stent in. There was only a 10% chance things would go wrong. Unfortunately, I was in that 10%. They also found a mass in my bladder. They removed the mass and sent it to pathology to see if it is a tumor. Needless to say, it was a pretty bad night and I didn't sleep well (thus my need to quickly write you and then go to bed).

The problem is that my urine is truly caught in this kidney. They need to get it out quickly or I will lose the kidney. Therefore, tomorrow I will be heading to Stanford for surgery #13 - to put in a nephrostomy tube which will drain my kidney immediately. Unfortunately, I'll also be left with a bag. Draining the kidney will give us a little breathing room to figure out what to do next.

I'm pretty sad right now. It was a rough night and today was rough, too. Tomorrow night at this time I'll have a bag (at least it won't be a colostomy bag). The hope is that they won't have to leave the bag on too long. My colleague suggested that I bedazzle it - because everything looks better with glitter!

So - off I go for Surgery #14. I'll be spending the night at Stanford, but should be back on Thursday morning. This rollercoaster ride never ends....