It was Friday afternoon around 3 o’clock when the phone in Don and Diana Cook’s living room rang. The person on the other end had only one thing to say—Don’s non–small-cell lung cancer, or NSCLC, had tested positive for the genetic ALK mutation (genetic abnormality). As Don hung up the phone, his family ran around the house in celebration.
Just like that, they had hope again: just like that, Don felt he had a second chance at life.
NSCLC is the most common type of lung cancer in the United States. ALK mutation (or ALK rearrangement) is one type of genetic abnormality that is found in approximately 5% to 7% of patients with NSCLC1 and requires targeted therapy that specifically targets that mutation.
Preparing for the Worst
For a while before getting the ALK diagnosis, Don and his family had been preparing for the worst. In September 2017, an earache had sent Don to his doctor, who in an abundance of caution, ordered an MRI. It was quite a shock to the Cook family when the results showed several tumors in Don’s brain. The largest of the 6 tumors was behind his left ear, on the lower side, and was pressing into the brain stem, which was causing his pain.
The doctors at the hospital believed that the brain tumors had probably come from another place in the body, which was then confirmed by a CT scan and a biopsy. Don was diagnosed with stage IV lung cancer. When Don left the hospital, he knew the outlook wasn’t good.
“I was thinking I had 6 to 9 months to go,” Don says. “I was figuring out how to deal with my family and my job, and how to wind everything down. We got out of the hospital on Tuesday, and then on Wednesday morning I woke up and told my wife we need to have a party on Friday and invite all our friends and let them know my condition. We had 60 or 70 people come over to the house and really had a nice time, and I had the opportunity to talk to everyone there and then. I gave them a little 15-minute speech on what it was, and how much everybody meant to me. I took the opportunity to express my feelings to everybody when I had the chance.”
Just 2 weeks after his initial cancer diagnosis, Don started stereotactic radiotherapy for the tumors, which was very successful. However, it took nearly 5 weeks and several biopsies before his doctors were able to obtain sufficient tumor sample to get a precise diagnosis, as well as his genetic profile, which revealed the ALK mutation.
Diana, who works in clinical trials at Stanford University, knew how important starting treatment with a targeted therapy or immunotherapy instead of chemotherapy would be to increase Don’s chances of survival.
“I’m grateful I have the background that I have, and the context that I have to help us work through the system and understand what the next step is, and what questions need to be asked when someone tells you you have a certain diagnosis. What are they looking for when they do a biopsy? What are the treatment options? I think somebody who has no experience with any of it is really at a loss, especially now,” Diana says in response to his ALK-positive status.
“Maybe 10 years ago, when there was only chemo or palliative care, it was less important, but now there are so many different options, and so many different mutations, and so many different ways of understanding treatment,” she says. “That’s something so many people could never understand. I feel like I have been a good advocate for my husband.”
So when the call came in that Don had ALK-positive NSCLC, there was cause for celebration. And even more so, because on the same day that his oncologist prescribed for him a targeted drug called Alecensa (alectinib), the FDA approved that drug as first-line treatment for patients with metastatic NSCLC that is associated with the genetic ALK mutation.
And just like that, Don stopped counting down how much time he had left and started looking to the future.
Before and After
Don and Diana now carry around a photo of Don’s CT scans from before (A) and after (B) the treatment with this drug. The “before” scan shows a large tumor in the lung with affected lymph nodes. The image that was taken 11 weeks after the start of treatment shows almost no sign of cancer.
“We’re like grandparents showing that photo to everyone, because it’s really dramatic,” Don says. It’s a good thing the Cooks have the CT scan results to show off: most people have a hard time believing that Don is fighting cancer, because the treatment side effects have been minimal.
“It’s just like taking aspirin or something like that. I literally don’t feel anything as I take it, and I just saw the positive effects, so it’s really been a wonder drug for me,” Don says. “I meet friends that I haven’t seen for a long time, and they know I have lung cancer, and they expect to see someone wasting away and the hair falling out,” he says. “I exhibit none of those traits, and I actually gained weight.”
Don took some time off work after his diagnosis to do some things he had always wanted to. He took guitar lessons, went to the senior center to play ping pong with friends there, and even met again with fellow musicians he used to play with in college. They now get together once a week to play together again.
“I’m taking advantage of still being here,” he says.
Keeping Positive Despite the Uncertainty
Don hopes to be here for a long time, but he knows that nothing is certain. The drug he is using could stop working at some point, although there are other drugs he could try. He gets an MRI done every 3 months to ensure the tumor has not returned, but he doesn’t really want to know what will happen when the drug is no longer working for him.
“I don’t ask those questions. Part of it is just to keep my head in the sand, but my understanding is, for as long as it is a fit, and until it doesn’t work anymore, I’ll keep taking it. When that happens, the doctors have said that we will go to some other form of treatments,” he says.
“I have refused to look at any other data, or anything else that says you have got 1 year, 2 years, 10 years. Whatever it might be, for me, that’s just information I don’t want. To me, it’s not going to benefit my mental outlook or anything like that, and so I let my wife worry about all that kind of stuff. I’m just living one day at a time for as long as I can be here, and trying to take care of myself as best as I can,” he says.
Diana does much of the worrying for Don, but although the future is uncertain, she realizes just how lucky they have been up until this point.
“We’ve always had options. We were never faced with a situation where nothing could be done. There were several periods when we were waiting to possibly hear bad news, but we never got bad news. At the beginning, we thought that was bad news, but then as I looked into it, I realized well, that’s not bad news yet,” she says.
There may be a day in the future when the real bad news does come, but for Don and his family, that day is not today, and they hope, not for a very long time.
1. Hoffman P. ALK in non-small cell lung cancer (NSCLC) pathology, epidemiology, detection from tumor tissue and algorithm diagnosis in a daily practice. Cancers (Basel). 2017;9(8):107.
American Cancer Society
Lung Cancer Alliance