Facing ALK+ Lung Cancer Together
They sat silently, like children sent to the principal’s office. Then Leslie spoke. “I don’t understand. Say it again, please.”
Andy’s calves had ached for months. Weeks of steroid injections hadn’t helped, and then he’d developed a chronic cough. He entered the hospital for tests – they found blood clots in his legs and fluid in his lungs, but nothing abnormal in his chest X-rays, so they sent him home on blood thinners. A few weeks later a lymph node on the left side of his neck swelled, and Leslie and Andy sat in the oncologist’s office waiting to hear the biopsy results.
“It’s stage four lung cancer,” the doctor said. “Adenocarcinoma. I’m sorry.”
“No!” Leslie shouted. “He’s 33 years old, and he doesn’t smoke!”
Andy felt dizzy and hot; he slid from his chair and pressed his face to the cold tile floor.
They were in shock, unable even to ask questions. “Make an appointment at MD Anderson Cancer Clinic in Houston,” the doctor told them. As they drove home, they wept. Everything they’d expected was gone, and what lay ahead was terrifying.
Then they began to plan. They’d already left their youngest child, one-year-old Josie, with Leslie’s sister and Andy’s dad. Their two older children, Marsala and Andrew, were at school, and Leslie’s brothers would pick them up at the end of the day. Leslie packed for the kids, threw things in a suitcase for herself and Andy, and they drove 300 miles from their home in Monroe, Louisiana to Houston. The first available appointment was two weeks out, but Andy and Leslie told the staff that they wouldn’t leave town until someone saw Andy. A few days later, they had a specific diagnosis: Andy had ALK-positive non-small cell lung cancer.
There’s a stereotype to lung cancer, that it’s a disease of long-term smokers. Many people with ALK-positive lung cancer are relatively young and have either never smoked or smoked lightly.
ALK + Lung Cancer
It’s not an uncommon diagnosis – about five percent of people with non-small cell lung cancer have cancers that are ALK-positive. That might sound like a small number, but it translates to 11,000 people in the U.S. alone, out of more than 220,000 people who will be diagnosed with lung cancer this year. There’s a stereotype to lung cancer, that it’s a disease of long-term smokers. Many people with ALK-positive lung cancer are relatively young and have either never smoked or smoked lightly.
ALK-positive lung cancer is the result of an acquired (not inherited) genetic alteration in the cancer cells, which consists of a fusion between the ALK gene and other genes. The most common of these is called EML4. ALK belongs to a class of genes that encode proteins called kinases. Kinases are often involved in the division and reproduction of cells. Normally, the ALK kinase is not found in lung tissue. However, the ALK-fusion genes are expressed at high amounts, telling the cell to divide and reproduce unchecked, leading to cancer.
ALK-positive lung cancer’s molecular biology wasn’t mapped out until 2007, but its discovery immediately suggested a hypothesis – that a medication that bound to the abnormal ALK-EML4 kinase might block it so that it couldn’t send the replicative signal. If so, the cancer cells would die after a time, and the tumors would shrink. Andy was treated with one such medication, but his cancer eventually metastasized to his spinal cord – it’s common for lung cancer to spread to the central nervous system. The human body has a built-in defense mechanism called the blood-brain barrier that separates the circulating blood from the brain and spinal cord and prevents most foreign material from reaching the central nervous system. Unfortunately, that is the very site to which ALK-positive cancers often spread.
MOST COMMON SITES OF METASTASES
Lung cancer can spread to many different parts of the body, but these are the sites where metastases are most commonly found.
Lung cancer commonly spreads to the adrenal glands, which produce hormones such as corticosteroids.
Common sites of metastases in the bone include the hip bone, upper leg bone, upper arm bone, ribs, and skull.
Common sites of lung cancer metastases in the brain include the tissue of the brain as well as the delicate membranes that surround it.
Lung cancer often spreads to the liver. In fact, the lungs are one of the more common origins of cancer found in the liver.
Lung cancer that originates in one lung can spread to the other lung.
Andy’s oncologist enrolled him in a clinical trial for an investigational medicine. Andy knew there were no guarantees, but he felt hopeful and empowered by working with his doctor to determine what his options were.
Andy knew there were no guarantees, but he felt hopeful and empowered by working with his doctor to determine what his options were.
Sharing the Load
When Andy was first diagnosed, Leslie figured he was overwhelmed, so she handled everything – her job, the kids, concerned family and friends, and caring for Andy. “I’m a doer,” she says. “If something’s wrong, I get right on it, but I couldn’t fix this. I tried to keep the load off Andy, but it wasn’t working.” Andy, meanwhile, was doing fine. “Everybody was worried about me, taking care of me, and no one was worried about Leslie,” he says. “I wanted us to share everything, just the way we always had.” So they talked, and they straightened things out. They’re both stepping up to take care of work and their kids. Family and friends offer help, but they need support too, and both Andy and Leslie provide that. And perhaps most importantly, the two of them are there for each other.
As he did before his diagnosis, Andy works from home. He provides reports to banks and finance companies, and Leslie is a child speech pathologist in the Monroe city schools. They attended the same Catholic schools from kindergarten through high school, but they didn’t start dating until they were halfway through the University of Louisiana at Monroe. They married in 2003, and three children followed. The oldest is nine, and they’ve told her this: “Daddy has cancer, and it’s not something you get better from. He’ll have it for the rest of his life.” Andy says, “As a family, we live each and every day with hope.”
Family, friends, church, and community have helped enormously. When Andy’s brother heard the news, he jumped in his car and drove from South Carolina to the clinic in Houston. Andy’s mother and sister also arrived shortly thereafter. Leslie travels with Andy to every medical appointment, and at first that was especially hard on Josie, who was only a year old and wanted her mommy. Andy’s mother and Leslie’s sister were the only ones who could comfort the baby, and they of course stepped up. Now, when Andy’s not feeling well, his mom is the one Leslie calls to take the kids to school or pick them up. They’re all in it together – Leslie’s father cooks a family dinner every Sunday.
Leslie and Andy shared their problems during a Catholic retreat, and the word spread. Now thousands of people across Louisiana and Texas – not just Catholics, but Baptists, Methodists, and others – are praying for them. None of their friends have pulled back. They organize fundraisers without being asked, leave food in ice chests on their back porch, help with the kids, and hold prayer services. Andy’s sister has created a Facebook page that not only sets the record straight that “anyone with lungs can get lung cancer” but also gives family, friends, and prayer warriors a way to follow Andy’s journey.
Since Andy’s diagnosis, his father has spent time researching lung cancer online. What he found disturbed everyone in the family. “More than a quarter of cancer deaths are from lung cancer,” Leslie says. “About twice as many women die from it as from breast cancer, and yet breast cancer research is funded at more than twice the rate of lung cancer.”
“There’s a stigma to lung cancer,” Andy says, “an idea that it’s a disease of old people who brought it on themselves by smoking. That’s not always true, and I’m an example. Besides, what’s blame got to do with it?"
“All the lung cancer campaigns seem to be about nothing but smoking,” Leslie says. “I got a good look at the stigma the other day. I have a charm bracelet, and the company that makes the bracelet offers a breast cancer support charm, a little ball covered with pink ribbons. Now a white ribbon is the symbol of lung cancer, although I admit you don’t see a lot of those. I called and asked to buy the same charm with white ribbons – just a different color enamel. Not only wouldn’t they make one for me, they didn’t want to hear about it. They didn’t want to be associated with lung cancer. Breast cancer is a good disease, lung cancer isn’t.”
"You have to be an advocate. Both for yourself and for others. You need to find the right doctor and learn all you can." -Andy
Andy and Leslie speak at conferences, where they share their ideas and experiences with patients and caregivers. “You have to be an advocate,” Andy says. “Both for yourself and for others. You need to find the right doctor and learn all you can. The disease is killing 150,000 people every year in this country. That includes both older people and young people with small children; it includes smokers and non-smokers. It’s not just one disease either, so research is complicated. We need to stop pointing fingers and get to work.” `QED Mark`