Tag Archives: lung cancer

Cancer Happens

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In the world of cancer there is a constant effort to declare each cancer the worst (or occasionally, the best). All cancer is a life changing proposition. Perhaps no diagnosis bodes the double whammy of dire odds and dire judgement as does Lung Cancer. Of course, you somehow brought on the horror. The first question lung cancer folks field is, “Did you smoke?” If only we can pin the blame on them.

Anyone daring to live in a catastrophically polluted city in China in 2013 is similarly at full blame for whatever happens next. Right?

Below one young husband shares what he has learned since his fit and compelling wife, my friend Kim,  got delivered a stage iv lung cancer diagnosis at age 34. Sometimes being alive in this world is enough to give you lung cancer. They also are both big fans of Consano, https://www.consano.org/about/how-it-works, a way to crowd fund medical research.

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.

Meet Kim – 36, Stage 4 Lung Cancer & a Wonder

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My best friend in cancer world is a woman named Kim. I met her several years ago at the clinic where we both get complimentary care to enhance our ability to survive our vicious treatment regimes. She was so young, so pretty, so caring towards others; and so bald. I wanted to encourage her. Then she showed up with dramatic weight loss, leaning on others to walk, even her huge smile was dimmed. I approached her husband when she was in treatment, giving him my contact information, “if I could be of help”. He gave a resounding “yes” and so we went out to coffee that day. Kim, it turns out, had just learned that her lung cancer that she felt confident in defeating at stage 3c, was actually stage 4. She was crushed with what that meant.

With brief daily exchanges, we track each others relative positioning – are we needed or are we both set to make it through another day with metastasized cancer colonizing our bodies. While monitoring each other we have fun. Perhaps the best part of our relationship is that we never need to explain.

But Kim is good at explaining. I think many of us wonder, “What the hell do other people do all day?” Well, here is a glimpse at one day in the life of someone staring at mortality all day, every day. Kim used to be a top athlete; now her triathlons are all with the medical system – our shared new norm.   warmly, marcy

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One Day

by kimmywink

I worked on a little project for the organization Caring Ambassadors.  I was asked to write about daily life with lung cancer.  This is what I came up with:

Living with Lung Cancer is no easy task. It is difficult to decipher which is more difficult the physical challenges or the mental challenges. I’ve been asked to comment on what it is like each day living with my terminal disease. Honestly, I feel my life is better summarized on a monthly basis. Each day can vary greatly. Is it a doctor appointment day? Scan day? Day before a doctor appointment day? A day of total rest and relaxation? A day that the thought of me dying before age 40 leaves me immobilized, weeping in bed, and tightly grasping a heating pad? In a month’s time I go through all of these typical days, and then some.

I will run you through a Wednesday of mine. This particular Wednesday is a scan day, the day my cancer is checked up on to see if it is shrinking, staying the same, or growing. The morning looks like any other morning. I wake up before 8 am to the smell of brewed coffee. I have a cup while I make a morning protein smoothie. For the most part, I eat a very consistent diet in hopes to eliminate GI issues, that are often a problem. As a former morning person I say my AM’s are slow. After smoothie is made I plop myself back down into bed, with my computer, and 2 bottles of pills. Fist down is the anti-nausea pill; 30 minutes later is my daily targeted chemo pill. Once I feel like my stomach has settled, at least one hour after anti-nausea pill, I begin to prepare for my day. I dress head to toe in cotton, give myself my daily blood thinner shot, and pack a light daypack. Today I will perform my new version of a triathlon. I am going to have scans, blood work, and EKG. I’m even going to add a quick stop at the pharmacy for good measure. I arrive on time for a 10:00 am check in for scans. The first is the quick CT of my lungs and abdomen. Thankfully the needle went in trouble free and my blood work was able to be drawn from the same injection point. Next is the brain MRI. This image is peskier clocking in at 45 minutes. Once scans are complete I venture up a few floors to get my EKG. I did not get a latte before my EKG this time; I know it will show an abnormally slow heart rate because of that and a side effect of my targeted therapy. Oh well. After 2-hours of actual doing things at my care center and 2-hours of wait time, my only stop left is a quickie at the pharmacy. I need to exchange my full sharps container from my daily blood thinner shots for an empty one. Finally I am ready to leave.

I make it home without too much frustration after navigating the parking lot. I’m hungry and need to eat before nausea kicks in. I eat a nice salad and drink some herbal tea. Nap time it is. Me, laptop, and cat are ready for our afternoon snuggles.

Tomorrow I’ll be getting the results of my scans. I can’t help but begin thinking about it now. Finally, I am able to catch my required 2-hour nap. This short snooze gives me the boost I need to visit with my my sweetie when he gets home from work. We’ll chat briefly, then decide where to go out for dinner. It’s a night to celebrate and all my running around has left me unable to spend a drop of energy on what to make for dinner. The sweetie could do it, but it’s best to use his energy for meal prep when I’m ill and require his assistance.

Since the blood work was already taken earlier, I can drink wine and not fear that my liver counts will reflect poorly after such indulgence. After returning home from a great meal with meaningful conversation, we’ll end the night with an easy 8-block walk. Now, I am ready for bed. I’m dressed in bedclothes and preparing my evening drug doses. I’ve learned the hard way to take them when I still have food in my stomach. Anti-nausea pill down, anti-depressant down; 30 minutes later targeted chemo down. I’m now officially ready for bed. Or, better put, ready to lay in bed and think of all the possible outcomes of today’s scans. I suspect sleeping will be difficult; within reach is my iPod with several meditation tracks at the ready.

Some days are better. Some days are worse.

http://aquariusvscancer.com/2013/07/02/one-day/