After a lot of lurking, I'm introducing myself.
I just joined iHub after reading your posts for some years. Before that, I used to read the NWBO posts on the Yahoo board. Some of my favorites that I always click on are HappyLibrarian, Senti, and Flipper, but there are many more that I enjoy reading. Kabunushi also comes to mind.
Anyway, I found NWBio after my husband was diagnosed in July-August 2011 with Grade III (anaplastic) astrocytoma. Our third child was just six months old when I woke up a little before midnight to a violently shaking bed. It was a grand mal seizure, and it seemed to come out of the blue. We were lucky that we had a friend who steered us toward the greatest surgeon at the best hospital in our region, Jon Weingart at Johns Hopkins. The surgery went well. We know that now, but the neurooncologist at the time was always pessimistic, so we had several years of tension before I started to be able to push the threat to the back of my mind. I think the emotional draw-down finally began when our fourth child was born in March 2014.
In the meantime, I was panicked, and I researched as much as I could. I have a bachelor's degree in chemistry from Carleton College and a master's from the University of Chicago in social sciences. I think of medicine as more of a social science in the way that the studies are often structured, but chemistry, of course, has also helped with understanding the mechanisms of various treatments. My work, until I became a stay-at-home parent, had been in journalism, sometimes science journalism, so that, too, helped with my research.
I ran across Northwest Biotherapeutics sometime in late 2011 or early 2012. I brought up immunotherapy to our Johns Hopkins neurooncologist, but he was dismissive. We visited the top neurooncologist at the NIH, but he was also dismissive. They were both kind of creepy in different ways, actually. I later learned that neurooncologists have a reputation for being weird. Who else would want to specialize in an area where most of the patients die pretty quickly? The guy at the NIH, who is no longer there, ranted about how he reads so many hundreds of journal articles a week, and he knows immunotherapy doesn't work. This was even before PD-1 blockers, I think.
We did take some of the NIH advice and extended my husband's chemotherapy to 12 rounds rather than the usual 6. I don't know whether that helped. But every doctor was still so pessimistic. I flat out asked some of them to just tell me everything would be fine, even if it wasn't true, because I just wanted to be able to live without death hanging over our heads all the time. But all the docs seemed to think disaster was always just around the corner. I have come to think that they are a little biased because they are always around when patients are sick and dying, and when patients get better they no longer see their docs, so the doctors get a skewed view of the statistics around them. And medicine seems to attract -- or med schools prefer to admit -- people who are uptight. Whatever the reason, my husband has had no further sign of disease for eight years now, despite copious dire warnings. He'll be going for another MRI next month, so, fingers crossed.
I love the ideas behind DCVax. Come on. It's so obvious to me that the standard single-target strategy is ridiculously simplistic. I'm sure most of you agree. My mom recently asked me whether it's true, as she had heard through idle gossip, that there really is a cure for cancer out there but conspirators are suppressing it because they want to keep making money off ineffective treatments. At first, I scoffed at the idea and told her that was silly. And then I thought, wait a minute, that's exactly what I believe about DCVax.
I had never invested money anywhere but a bank before, so it took me a little time to get up the gumption and figure out how to proceed. In early 2013 I bought my first shares of NWBO. I think it was 150 shares at around $3-and-change each. I eventually paid as much as $7 a share before the price jumped up and then crashed. After the shock wore off again, I decided I might as well average down. We don't often have casual funds, so I've been very conservative over the years. We now have only a little over 30,000 shares, at an average of around maybe 70 cents a share, I think. It's a pretty crappy position really. But it is what we could afford, when we could afford it.
I have only one contribution to the discussion at the moment. I have waited patiently over these years, sometimes doubting, but always going back to how sensible the concept of DCVax is. I don't read the message board every day, nor even every week, so I've missed many discussions, but I'll venture that one point that I haven't seen mentioned is that both Lindas are women.
In college circa 1994 I joined a Women In Math and Science club. There someone told me that the difference between female and male scientists is that female scientists have a tendency to try to be perfect. They wait to publish until their research is whole and complete, with meaningful results. As a result, in a publish-or-perish environment, they tend to end up near the bottom of the pecking order, even though their research might be of higher-than-average quality. Men, very generally speaking, have a tendency to publish more off-the-cuff. Therefore they get more papers to their name, even if a lot of the stuff they put out there is half-assed.
I definitely get the sense that Linda Liau, at least, is a perfectionist, and in the vein of the typical female scientist as it was explained to me a quarter century ago. That could explain why she and her colleagues have been stepping so gingerly and deliberately through this trial. Their ways aren't typical, because typically it's men who are calling the shots. This drive for perfection can be maddening, especially for us shareholders and those of us related to patients.
But it's possible that the only kind of person who can carry off approval for DCVax -- through the thicket of opposing financial interests and all kinds of other obstacles -- is someone with this supposedly characteristically feminine approach to science. Linda Liau, with Linda Powers backing her up, is going for an unassailable result under heavy fire.
I don't know whether this characterization of female scientists actually holds up under scrutiny, but I always believed it to have some grain of truth. Moreover, I thought it was an embarrassing weakness of ours. Now, for the first time, with the example of DCVax, I see how it can be a great strength.
