Wednesday, September 7, 2011

Smokers Unite – you have nothing to lose but your chains!

What is the stupidest thing you’ve ever done in life? For me, there is a variety to choose from. But in the Top 5 has to be the decision to smoke cigarettes, a mistake made with that first one in 7th grade, and then repeated approximately 20 times a year, 365 days a year, for over thirty years. I quit a hundred times during that period, but only the final one ever lasted any significant time. But that final quit, in 2001, has been the life changer. I don’t miss it, and I don’t kid myself about its virtues. It is a powerful addiction to a drug, and like any addiction, it whispers lies into your ears about how much you need it. I could not quit until I approached it not as “giving up” something that I liked, but quitting an addiction to something I hated.

About six years later, having lived through a number of deaths of contemporaries, I began to wrestle with that issue of mortality. I always thought that some day I would have to pay for my 30+ years of smoking. And I wondered whether there was anything proactive that I could do. Through a client that arranges for clinical trials of cancer drugs, I became aware of that whole world of clinical trials, and so I went searching in the public data base for clinical trials of lung cancer. And I found what I was looking for: a clinical trial for the early detection of lung cancer. I signed up for it.

The common wisdom on lung cancer is that once it is noticeable enough to detect, it is too late in the process to offer much in the way of treatment. (And of course there are exceptions to that rule – exceptions who I know by name and who are disease free years later). But that is the basic state of the art with lung cancer: if they could catch it earlier, then they might have more treatment options. The clinical trial I signed up for is seeking to do just that – it is exploring whether there are perhaps biological markers that may indicate why lung cancer starts to grow in certain people but not others.

How do they gather this information? First, they start with the study group most likely to get lung cancer – heavy smokers and former heavy smokers. They bring us in one by one, and first ask a battery of questions on lifestyle and family history. They test our lung capacity now to establish a base line. Take blood samples. And sputum samples. And then do a CT scan of our lungs. The scans are reviewed and then we are sent a report, with a nifty CD containing our lung scans (see photo above for one little slice). They tell us where we are today. If there is no apparent disease or progression, we are told simply to come back in a couple of years and they will look at it all again. If they see disease, then you are sent to your own medical providers for treatment. The study is not a treatment study, but an information study.

We are all adding our data to the data base. Over time, some of us will be diagnosed with lung cancer. When they have a larger enough study and history, then researchers will be looking for biological markers that may differentiate the cancer patients from the rest. And if they can find those markers, then in the future they can perhaps select people with those markers for earlier treatment.

My latest visit was two weeks ago. The location of the study is at NYU Medical Center in Manhattan, in a big medical complex a few blocks south of the Untied Nations near the East River. I am situational friendly with Ellen and Jacquie, the nurses who are working on the study. We repeat the sampling and questions from the original visit. Chat about our lives. This year Ellen said “we want to make a good effort on the sputum sample this year.” She laughed when she said it; I asked “why?” She said that in a colon cancer study they think they may have found a marker in sputum. So she repeated “they’re really pushing the sputum.” I did my best, in a telephone booth contraption breathing a saline inhalant that irritates the lungs, and was finally able to deliver a small sample into a plastic dish with a lid. I apologized for it, and she said “No, that is actually a nice one. I’ve become an expert on sputum!” It was all done in a light hearted way.

After the visit, I met my wife waiting in the lobby, and off we went to see the rest of New York. Each time I have gone, we have turned the visit into a night or a weekend in New York. We walked a bit, had a nice dinner, and saw Spiderman on Broadway. We stayed overnight, and then made our way home the next day. The visit and the participation in the study is something that I look forward to. I am being proactive. I am contributing to the greater good. I am having a great weekend with my wife. And two weeks later I get my report, with a new CD with the newest scans and the older ones as well. And so far, it has always been good news.

More good news. Participation is free. I think they put through a claim if your insurance covers some of the items, but otherwise, you get these diagnostic services for free because you are participating in a study. Of course there is no such thing as “free”; someone is funding the study. Ellen indicated that they have funding to last for at least another five years. I asked her if they are still enrolling new participants. She said yes, indeed. That’s where you, the reader, come in. If you are a current or former heavy smoker, and are willing to get yourself up to New York once every year or two, then this is a good reason to do so. And if you are not that smoker, but know of loved ones who are, you may want to let them know about this study.

Here is the background and contact information:

Ellen Eylers, RN, MSN, MPH
Program Coordinator
NYU Lung Cancer Biomarker Center
550 1st Ave, 7N24NBV
New York, NY, 10016
p 212.263.6126
f 212.263.7980

So am I blogging about lung cancer as something that is “right with the world”? I am not. I hate cancer. Despise it. It has taken a lot of love out of my life. So this is the way I fight back. I become proactive. I let everyone know that this study is out there. We together accumulate data, and a lot of smart and talented people review it all, and find better ways to combat our common enemy. We still lose soldiers along the way; but hopefully with enough of us contributing, we eventually win the war. That’s what is right with the world – people devise this study, people fund it, people participate, people administer it, and over time, we find some truth that helps make the world a better place. And we see a lot of Broadway shows in the process.