It’s been some time now since I had that ah-ha moment where I realized I was indeed an advocate. And to be honest, it’s been a hard road. When I first started writing, it was all about me, my family and how at times, things were just unfair. No one saw Jillian as the face of lung cancer. In part because there were and are so many like her—how do you decide on whose face is THE face? I wanted to tell people that to judge her by her diagnosis was wrong. But changing people’s minds is not an easy task—and you have to have a certain skillset to teach them without undermining your message. It doesn’t matter how you got this terrible disease. It matters how you receive the quality, compassionate and life-saving treatment that matters. I used to say the following that I had seen or heard some other time:
When a woman says she has breast cancer the reaction is: Oh no.
When a man says he has prostate cancer the reaction is: I’m so sorry.
But when a person says they have lung cancer the reaction is: Did you smoke?
To that end, I learned to turn around their question/statement to “Can I ask you why you asked that?” moment. It goes back to that nagging stigma that so many of us are trying to change. But there again, for a very long time I was even a part of that thinking in terms of let’s not talk or focus on the smokers, past or present, let’s focus on “people like Jillian.” Boy, was I wrong! We, the lung cancer community, should not do what we ask, implore, others not to do and that is judge us. We should not discriminate against those we are advocating for.
In that realization comes enlightenment. I’m advocating for all lung cancer patients, caregivers and families. I know that now. Since Jillian, so much change has happened. New drugs have come to market from clinical trials. And that is so exciting…to be honest it’s still a little bittersweet though. But let’s take a quick look at some of the latest breaking news. Recent drug approvals have been for Keytruda, Tecentriq, Opdivo, Tagrisso, Xalkori and Alimta. As of October 2016, Alecensa was granted breakthrough therapy by the FDA. I know these drug names mean life-saving and quality-of-life therapies. But to so many of us it’s all Greek. I’ll try to break it down for you as best I can, because their complete drug names are even more confusing.
pembrolizumab is Keytruda – used for NSCLC patients whose tumors express the PD-L1 mutation with no EGFR or ALK genomic aberrations. Huh?
atezolizumab is Tecentriq – for patients with metastatic NSCLS who had disease progression during or after a platinum chemotherapy regime.
Did I mention Tarceva? That is erlotinib – limited to patients with EGFR mutations.
nivolumab is Opdivo – used for patients where the disease has progressed after chemo.
osimertinib is Tagrisso – used as a second-line option in patients with EGFR.
crizotinib is Xalkori – used for treatment for patients with the ROS1 mutation.
pemetrexed is Alimta – now approved for use after four cycles of Alimta with cisplatin as a stand-alone therapy for maintenance.
Lastly is alectinib, which is Alecensa the latest drug with FDA approval for first-line treatment for patients with ALK inhibitor.
Now you understand—it’s all Greek! And putting it all together the with major known gene mutations, protein inhibitors, immunotherapy options…you need to carry a medical and Webster’s Dictionary with you at all times!
Besides the drugs now available, more research is being done at light speed. The Bonnie Addario Lung Cancer Foundation is moving forward with their study to understand why people like Jillian got lung cancer. Other major research universities are looking at and making progress thinking outside the box. I met with a few earlier this month at Moffitt Cancer Center here in Tampa. They talked about crossing the lines between cancers—using a drug that has been approved in another cancer to see if, when combined with a approved lung cancer drug it will combat the cells resistance and turn it off or on depending on the case. I hope that this kind of thinking and researching is part of the Moonshot and that it continues.
Now for the hardest part of being an advocate for me, are survivors. Jillian was a survivor, even though she didn’t like that term. A part of me still has mixed feelings—survivors are people who are still here, now, in the present. But I’ve come to see them, many whom I call friends, in a different light. They are the strength and core of our advocacy. They are the reason to continue to fight. When I was doing the breast cancer walks, more than half of the women I walked with were survivors—they had been diagnosed, treated and were still here. That’s why people donated money—there were survivors and they knew their money would help. I never made that same association with lung cancer, don’t ask why. Today, I know. For me, it was too current, raw and painful to admit that people survived with lung cancer. Today, it’s vital that we start shouting it, saying it, applauding our survivors, many who go from clinical trial to trial. But they are here. And in order to keep the momentum going and growing, we need to share their success, keep supporting and cheering them. So while November and this year’s Lung Cancer Awareness Month is over, we’re not. Lung cancer awareness happens every day, every month. We need to share and change the message. Anyone can get lung cancer.
Stronger than lung cancer,