It seemed so out of place; 20,000 hematologists were intermingled with the typical palette of hipsters, transients and nuclear families in the SOMA district of San Francisco. They might have been mistaken for slightly nerdy vampires, the world’s experts in blood. It seemed equally strange that I found myself in the midst of this scene, but the fact was that I had always wanted to come to American Society of Hematology’s 2014 meeting (ASH14), more so now that our Team Kim efforts at the Nike Women’s Half Marathon had ended. Despite raising a quarter million dollars for research towards a cure for blood cancers, I was left feeling as if there were more to be done.
When you find yourself impacted by leukemia, or any cancer for that matter, it is a very human instinct to grasp for a foothold, to stabilize the dizzying reality that your loved one is dying. For me it was in 2012 when Kim’s diagnosis came back as cytogenetically normal acute myeloid leukemia (AML) with Trisomy 8 and an NPM1 mutation. Not only did I know that the prognosis wasn’t good, I didn’t know what Kim was dying from. We contacted physician friends, studied internet research, examined clinical trials and crammed for an imminent final. Living and breathing AML day in and day out, I quickly learned what epigenetic modifiers were, that diphtheria could be used as an anti-tumor agent and a dozen acronyms for various combinational chemotherapy protocols. After two years of cramming, well, the final came and we didn’t pass. After the fact I wanted to know what answers we got wrong and how we could’ve answered them correctly. Kim, always the perfectionist since our days together in college, would’ve wanted it that way, with extra credit.
So this is how I ended up at the teacher’s office – ASH14. The lead up to the conference was bubbly. An effervescent feeling percolated the conference, with new insights borne out of low cost DNA sequencing and progress with outside-the-box treatments. The optimism came from Dr. Lewis Silverman who talked about improving the long-term lives of children cured of ALL, and from Dr. Julia Maxson and her collaborator Dr. Brian Druker about next generation AML drugs and targets. The crown jewel of the conference was Dr. Carl June and his colleagues’ presentations on CAR T-cell work, where patients own immune systems are engineered to beat leukemia, which is showing excellent response and hope for FDA approval. I noted that in all of this cutting-edge work, The Leukemia & Lymphoma Society (LLS) was a research sponsor in nearly every case.
A personally important update came from Dr. Eytan Stein of Memorial Sloan Kettering, who shared data about compounds called IDH inhibitors. The recent results of these medicines for AML patients with IDH mutation were very good, with half of the patients showing good clinical response, all from taking a pill with no toxic chemotherapy! While promising for patients, this data unfortunately came from the clinical trial was too late for Kim. Hearing the results, I tried to focus on how happy she would’ve been in finding the right path for herself, having dug through dozens of candidate clinical trials. She would have been happy to see such good progress against AML.
I also ran into a hematologist who treated Kim when we were first admitted. She was presenting promising pre-clinical results of a new inhibitor against real patients’ AML cells. I recognized her and walked up to her and could note confusion in her face. When you are a cancer patient, or part of a patient’s family, you cannot be certain that the hospital staff’s compassion was heartfelt or that the bedside manner was feigned. Her confusion turned to recognition and surprise as she blurted out “Ben!” and gave me a warm embrace. Indeed why would you ever expect to see someone you only see in the private rooms of the neutropenic hematology floor in the conference hallways of blood dork-dom? It seems that we do build human bonds through the cold façade of the clinic. We chatted about her poster, which incidentally included promising data using Kim’s cells. And yes, this work was funded by the LLS too.
Did I accomplish what I had set out to see and feel? I left ASH feeling absolutely certain that we are on the verge of beating blood cancers and that research is making a difference. The funds raised through LLS and the hard work of Team In Training (TNT) and TNTers were making an impact on next generation therapies with lower side effects and better results. You could see it in the excitement behind the pressed shirts, neat ties and PowerPoint presentations once a year at ASH. It was bittersweet though. This optimism can’t change anything for Kim. But we all know, are or have a Kim. That’s worth running for, raising money for and fighting for in our own ways.
Ben Wang is a Team In Training alumni and founder of Team Kim, a nationwide group of TNT participants who raised over $250,000 while training for the Nike Women’s Half Marathon in 2014. Follow Team Kim’s story at www.goteamkim.com and learn more about Kim and www.kimbwang.com.