I feel amazingly lucky, I’m not a particularly religious person but sometimes it seems like more than luck that’s kept me alive and going. My name is Dr. Lucas Portman, I’m an oncologist at Washington University School of Medicine in St. Louis, Missouri and was diagnosed myself, with leukemia in 2003.
The type of leukemia that I actually have had is called acute lymphoblasmic leukemia, which they call ALL in short. I’ve now been dealing with having leukemia for over a decade. And it’s been an extremely long and hard road. Last year when I was diagnosed with my second relapse of leukemia it seemed like I wasn’t going to make it, that the leukemia was going to take my life and not only was I young but I was also a leukemia doctor facing dying of leukemia.
I’m not sure what kept me going at that point. I never gave up hope, I had tremendous faith in my doctor, my mentor, Dr. Ley who studies the genetics of leukemia.
He was very, very ill on this last one and it was hard to watch. It was very difficult for everybody but it was mostly difficult for him. What am I talking about. He was very, very sick and we didn’t know if he was going to make it.
I think that anyone who has relapsed acute leukemia, especially relapsed ALL has a high likelihood of dying. Dr. DiPersio and I have a bit of an unusual relationship now in the sense that I’m a leukemia doctor and he’s a leukemia doctor.
I have to be careful what I recommend. I can’t say start this drug, he’ll say well you never did that with anybody else. You always told me it was a worthless approach. You’re out of options and so Tim and I Lucas all agreed that we were going to try to. Do what we do pretty well here and that’s sequence his cancer gnome and see if we can identify specific mutation that were present in his cancer or leukemia gnome that would be so-called actionable.
In other words, find a mutation that we have a drug for. So what an amazing convergence of circumstances, where a guy who works on leukemia gnomes and has leukemia is able to use the information to influence critical decisions at a critical point in his life when the information was absolutely essential to survive, just to survive.
We don’t do this as a fee for service it’s a study, it’s an academic study. And so we bank samples so that we can sequence them later. In his case there was no later. We knew that we had to do it immediately for it be of value to him. We didn’t see a smoking gun in his genetics.
We saw some mutations but nothing that we could act on, obviously. But also we looked at the RNA from the leukemia tumor.
This one really stood out. This is the FLT 3 gene, which was wildly over expressed to levels that shocked everybody that was looking at the data. This gene was targetable with a drug that was FDA approved for the treatment of other cancers.We put him on this drug called Sutent.
I remember I started taking Sutent on a Friday. Had my blood drawn on Monday and my blood counts had improved. And while it could have been coincidental that was a real turning point for in the sense of thinking, hey this might be working.