This cross posted at Nursing Words
Please file this away under what-to-do-when-a-friend-or-loved-one-is-diagnosed-with-lung-cancer. If anyone you know has lung cancer or is diagnosed with it in the future, there is a about a 4% chance that the cancer itself has a mutation that makes it susceptible to a novel drug treatments. Please read on, you will likely know someone with lung cancer at some point in your life if you don't already.
A dear friend, Ted (he encouraged me to tell his story), was diagnosed with non-small-cell lung cancer last year. The prognosis for lung cancer is generally very grim. Without going into the nasty specifics of his case, Ted was basically told to always keep hope alive but to also get his affairs in order.
Ted is an unusual character. He's a published author, talented actor, accomplished Jazz saxophonist and a severely progressive man who happens to be very pro-gun. The gun part is not an unusual thing in South Western PA. While I'd like to believe that none of this would have mattered in our efforts, and that we would have worked just as hard for anyone a degree of separation away regardless of merit, the prospect of losing Ted without a fight wasn't an option. Friends and family immediately began an exhaustive search for promising trials. Eventually we found a trial at Ohio State University. Ted's tumors were biopsied and analyzed for possible genetic flaws that would make them susceptible to new treatments. He soon got the good news that his tumors contained the ALK mutation, making the cancer cells susceptible to the drug XALKORI. Besides ALK, there are other gene mutations that open the door to new treatments.
XALKORI isn't a cure but it dramatically shrinks tumors for many people and buys a considerable amount of time. Promising research continues on using XALKORI in combination with other drugs.
The point of this post is threefold:
1) By all means, help keep hope alive in lung cancer patients. A fighting spirit is needed just to overcome the shock and grief that often follow diagnosis. Part of the larger fight to keep hope alive is to help science by participating in clinical trials when they make sense.
2) Get the tumor tested for ALK and other mutations. If you can't afford it because of junk insurance or no insurance, keep in mind that most trials will perform gene testing as part of their initial evaluation.
3) Be an advocate for lung cancer patients if you know one. In Ted's case, his oncologist did not advise him to have his tumors tested for the ALK mutation. It was only the testing done as part of his evaluation for the OSU trial that lead to testing. Without the help of friends and family Ted would not likely have known about this option. Get in the oncologist's face (in a constructive way) and make sure the gene testing is performed.
Over 260 thousand people will be diagnosed with lung cancer this year in the US. If 4% have this one gene mutation, that means over 10,000 people can be given not only a considerable amount of extra time, but the possibility of living long enough to benefit from the rapid advances being made.
Finally, here are some lung cancer facts grabbed from The American Lung Association:
Lung cancer is the leading cancer killer in both men and women in the United States.
In 1987, it surpassed breast cancer to become the leading cause of cancer deaths
in women.
Lung cancer causes more deaths than the next three most common cancers combined
(colon, breast and prostate). An estimated 160,340 Americans were expected to die
from lung cancer in 2012, accounting for approximately 28 percent of all cancer deaths.