One would think that after returning from the cancerGRACE Patient Forum in Boston on September 6th and after learning about new medications I can try when Xalkori stops working for me, I would feel more relaxed. Initially, I did feel better about my future options. On most days, I still feel relief that there is a new targeted therapy that I can try, (if/when I need it), and also another one which is expected to be FDA approved in the next couple of months. I learned about other targeted therapy and chemotherapy strategies that clinicians are using for patients like me. However, I've also found myself thinking about what these medications and strategies really mean for me.
When I was first found to have stage 4 lung cancer, the words "terminal cancer" hit my ears and began to come out of my mouth. I actually heard myself saying, "I have terminal cancer" and, "There is no cure for me." I just Googled "terminal cancer" and here's what I found:
"A malignancy which is expected to cause the patient’s death in a short period of time—i.e., weeks to several months"
In the beginning, saying I have terminal cancer was accurate. However, with Xalkori working well for me, I no longer say I have "terminal" cancer. But then...what do I have? How is my illness characterized? Sadly, the words, "There is no cure for me," are still true and I hear myself saying that phrase, occasionally.
For right now, patients in my situation stay on a targeted or chemo therapy until it stops working. Then we try another regimen and stay on that for as long as possible. We go from one regimen to the next. If we can get several months to a few years out of each regimen, perhaps we can cobble together enough time for researchers to come up with a cure. Boy...I sure hope researchers are able to keep coming up with new targeted and chemo therapies to keep me alive for while.
I'm not ungrateful in any way. The cancer researchers who developed Xalkori are the ones who have made it so I don't have to say that I have terminal cancer. They have advanced the field so that stage 4 lung cancer can now be viewed as a chronic illness. Much like people with diabetes watch their diets, monitor their blood sugars, and inject insulin - while waiting for a cure, I'll take my targeted therapy, will switch to a new therapy when needed, and will continue to wait for a cure.
I don't mean to be greedy...but a cure would be really awesome.