“There is no greater agony than bearing an untold story inside you.” – Maya Angelou

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Showing posts tagged with “Lung Cancer”

Thoughts from a Patient Advocate at ASCO14

Author: Molly Lindquist
Jun 04, 2014

Scott and I spent this past weekend at the American Society of Clinical Oncology annual meeting in Chicago. It was amazing to see so many oncologists and researchers in one place. It was even more exciting to see some of the researchers who have crowdfunding projects on Consano. Dr. Robert Doebele of University of Colorado was there presenting his lung cancer research, Dr. Kimmie Ng of Dana Farber was there for Colorectal Cancer, Dr. Don Dizon gave a talk about survivorship in gynecological cancer patients, and we got to see them all in person (versus our usual Skype, email and calls)!

It was nice to see a representation of patient advocates at the meeting, particularly on Sunday, National Cancer Survivors Day, as many patient advocates (like myself) are also cancer survivors. Or have been a caregiver to a family member with cancer. Or have lost someone they loved to cancer. Or all of the above. I participated in an interesting patient advocate focus group that gave me the chance to hear what other organizational leaders are doing to make sure that patients are a part of the conversation in the evolution of cancer care.

I also had the opportunity to meet up with friends from other organizations who are doing what they can to make a difference in the lives of patients — so there was a lot of catching up and laughing. We met a lot of wonderful researchers doing innovative work in a wide variety of areas of cancer, so stay tuned in the coming months for some great new projects. 

The biggest highlight: spending time with Scott on our 10th Anniversary Weekend. Did we ever anticipate that we would be spending this milestone at a cancer conference? Nope! But life has a way of doing that, of taking you down a road that you never imagined you'd travel, but that you certainly need to be on. Cancer showed us to have gratitude for the simple fact that we were able to spend the day together. Of course, we're not ruling out more tropical locales for future anniversary celebrations….

 

 

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An Intimate Awareness of Lung Cancer

Author: Spencer Williams
Nov 14, 2013

My grandfather, his fingers yellowed by tobacco from smoking unfiltered Pall Mall cigarettes for more than 50 years, died from a combination of prostate cancer, emphysema, and alcoholism.  He didn’t have lung cancer, but if you pay attention to all of the anti-smoking ads, then you’d think he should have or at least only people like him – old folks who smoked a lot of cigarettes for a lot of years.

I believed the ads. I believed that smokers got lung cancer. I held that belief up until the day my wife was diagnosed with lung cancer. Kim was diagnosed in May 2011. She was 34 and until a few months earlier had been very active and healthy. She ran regularly and ate well. We rock climbed, kayaked, camped, and rode our bikes to the bar in good weather. She wasn’t a smoker. She told me she had a cigarette at her bachelorette party in 2007 and smoked the occasional cigarette at parties in college.  All of that was years before and all of her doctors now classify her as a non-smoker.

 

So how did Kim end up with lung cancer? Was it her little bit of smoking in college or maybe it was exposure to radon. I don’t know. She doesn’t know. The doctors don’t know and ultimately, once Kim was diagnosed with lung cancer, the how started to matter much less.

Most people, like my wife, don’t discover they have lung cancer until they are overly symptomatic and other illnesses have been ruled out.  By the time Kim had had a cough for a month with difficulty breathing, then lost her voice, and then started coughing up blood, almost 6 weeks had passed.  A tumor the size of golf ball had collapsed the upper lobe of her left lung.

At 34 years old, without obvious risks factors, other causes got ruled out first: allergies, asthma, bronchitis, pneumonia, tuberculosis all came back negative until she started coughing up blood. Coughing up blood is bad. We were scared. Coughing up blood is what happens in movies just before someone dies. That was two and a half years ago.  After it was determined that Kim’s cancer was non-small cell lung cancer, adenocarcinoma, a treatment plan was determined and begun.

As kids under the age of 40, our limited experience was with younger breast cancer “survivors” who endured their treatment, were in remission or NED (no evidence of disease), and living their lives.  Kim was strong and just as young as those women, and if she could endure her prescribed 8-weeks of chest radiation with concurrent chemotherapy, then she and I would get back to living our lives.

According to the post-treatment scans, the chemo and radiation appeared to work in their targeted areas. Unfortunately, the lungs are the “main bus terminal” for the body and her lung cancer decided to metastasize and took a ride down to her right adrenal gland.  Kim has been in treatment ever since and we became really aware of lung cancer.

We are aware that lung cancer is so deadly due to the fact that there aren’t any easy tests for detection – no self-exams, no PSA screenings. What we discovered is that lung cancer doesn’t just happen to old, long-time, multiple packs per day smokers. We learned it happened to us and was going to continue to happen to us. We learned lung cancer kills almost 160,000 Americans a year. We found out lung cancer kills more people per year than breast, prostate and colon cancers combined. It kills almost twice as many women as breast cancer and three times as many men as prostate cancer.

And then we learned about genetic testing and targeted therapies. We were told Kim’s cancer had a specific mutation called an ALK rearrangement and a targeted therapy had been fast-tracked for approval by the FDA, Crizotinib, and Kim would be the first patient on it at her treatment center.

I was the internet researcher for information about adenocarcinoma in those first six months so Kim wouldn’t have to read the discouraging statistics about lung cancer. Facts like the 5-year survival rate for lung cancer is 16%. That rate hasn’t really improved in the last 40 years. I also found out only 4-5% of lung cancer patients have the ALK rearrangement that Kim has.

I looked into why a drug like Crizotinib would get fast-tracked by the FDA. I was astonished at what I learned. Most traditional chemotherapies are considered successful if 10-20% of patients respond positively to them. In clinical trial, Crizotinib, had a 65% positive response rate in patients for an average of 10 months without the heavy side-effects of traditional chemo. Kim just passed two years on Crizotinib on October 4.

Knowing a “cure” is unlikely for Kim’s cancer, her goal is to always be at least two-steps behind the medicine. And there are now second-line therapies to Crizotinib in trial. The research in this area of treatment shows great promise along with targeted immunotherapies that are also in trial.

Kim and I have an intimate awareness of lung cancer. Now we need lung cancer awareness to reach an audience larger than patients, their caregivers, their friends and their families. We need people to understand that if you breathe, you’re at risk for lung cancer. We also need to change the stigma of lung cancer being a smoker’s cancer.  Almost 18% of new lung cancer cases will be never smokers and 61% will be former smokers. So please, if you ever meet a lung cancer patient, don’t have your first question to them be, “Were you a smoker?” Instead ask them how you can help.

If you’d like to learn more about Kim’s ongoing journey, she blogs her experiences at aquariusvscancer.com.

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