Sitting across from me is someone who is the picture of health. He smiles and calls himself one of the lucky ones.
Why does he think he is lucky? Three years after being diagnosed with Stage 4 non small cell lung cancer (NSCLC), Charles Despins is still alive.
Don’t tune out. Despins wants to tell you something. He has never smoked in his life. And he wants to change the narrative, or story, that we all have about lung cancer. Fifteen per cent of those who are diagnosed with lung cancer have never smoked, he says, adding that his home tested negative for radon, a cause of lung cancer in non-smokers. That lung cancer happens to those who have never smoked is just one of his messages. He also has another message: hope.
Despins has been taking a medication called “Alectinib”, which is marketed in Canada under the name Alecensaro. Approved in Canada in October 2016 (earlier in some countries), Despins has been taking it since December 2016. Since being diagnosed in 2015 and taking initially a similar medication, his treatment has not involved chemotherapy or radiotherapy.
Understanding how this form of lung cancer works is a bit complicated. First, this type of cancer is an acquired gene change, meaning that it was not something Despins inherited. Acquired mutations in lung cells often result from exposure to factors in the environment, but some gene changes can just be random events that sometimes happen inside a cell, without having an outside cause.
The kind of NSCLS that Depins has is accompanied by anaplastic lymphoma kinase (ALK) rearrangement. ALK is a fusion of two genes that generates a protein stimulating anarchic cell division. The targeted therapy actually targets this protein and renders it ineffective.
Despins explains that it doesn’t cure the DNA mutation or the cancer; it “blocks” it. He describes it as taking the ignition key from a car.
Most of the time, this type of lung cancer is not diagnosed until Stage 4, and that was true for Despins.
“I took care of myself, I worked out, got as much sleep as I could . . . so when I was told I had lung cancer, I said that was impossible,” Despins recalled. Since his diagnosis, Despins has learned a lot about cancer and lung cancer, in particular. It is the number-one cancer killer in Canada, but there is little awareness about it.
“I will never know the cause and source of my cancer. It just started at some point,” Despins continued.
“There have been revolutions in treatments and life-extending medication, as well as positive results for a small percentage of patients, said Despins, referring to his particular medication and those taking it. The one thing all ALK patients have in common is that we have never smoked,” said Despins. And most of these cancer patients are much younger than the image we have of cancer patients, says the 56-year-old (he was 53 at the time of his diagnosis).
It was back in 2015 that Despins felt somewhat tired but figured he just needed to slow down a bit. It was a large blood clot in his leg which followed on the heels of a smaller clot, that sent him to a doctor.
“I got this report that was three pages long — it was long because it described all the places in my body where the Stage 4 lung cancer had metastasized. I had it in both lungs, all over my bones, on my rib cage, sternum, spine, my hips, pelvis and my liver. I didn’t have many symptoms. I just felt tired,” he recalls.
That diagnostic report stopped him in his tracks.
“It just numbs you. I couldn’t say anything. I didn’t know what was coming. I thought I would start to decline,” Despins relates.
At that point, he had just begun taking a series of medications described as “targeted” which were designed to destroy the protein which stimulates the cell division.
“But then I started to feel better,” Despins recalled. Scans showed that the cancer had retreated by about 50 per cent. His lungs cleared up, except for a few small spots.
That lasted for a year, but then the cancer had moved to his brain. Scans showed six points of metastases.
According to Despins, the cancer had started to mutate. In late 2016, he started a new targeted medication. Within a few months, an MRI (Magnetic Resonance Imaging) showed no evidence of cancer in his brain.
The story gets better. Another 20 months later, the cancer in his bones had stopped evolving and there were signs that the lesions caused by the cancer had started to heal. His liver showed no visible signs of cancer.
At this point, he has a few nodules on his lung and they are being monitored, he says.
He takes his medication religiously at the prescribed times. He knows it is critical; he carries his medication with him. And he mentions that the pharmacist at Jean Coutu in Hawkesbury has been efficient and ensures that the rare medication is ordered in a timely manner to be available to him. Costing $13,000 per month, Despins said that he hopes it is approved as part of health coverage, but at the moment, it is not covered. He said that his work insurance plan and the drug company, which is interested in the results, are sharing the cost at the moment.
“I know I am fortunate to have had insurance and that I have responded so well to this therapy.”
Of the one-third of cancer patients who can take the drug, some will not respond or will have a partial response. Others suffer from side effects. He said that some people become very tired and can barely walk.
And this brings us to his third message and it is this: even if there is a cancer diagnosis, you can’t let cancer define you.
“Life is still life. You have cancer, terminal cancer. There is no point kicking and screaming about it. Life is now. I always thought I lived life fully, but now, I live life 120 per cent. I am so grateful to have access to these fantastic medications.”
Despins believes that targeted medications are a big part of the future of cancer treatment. Chemotherapy’s “scorched earth” approach, where cancer treatments can sometimes annihilate the patient, will ultimately become less prevalent than targeted therapies or other emerging new therapies.”
This opens the door to advanced cancers becoming chronic diseases, Despins says. He points to diabetes once being a fatal disease and mentioned that HIV AIDS used to be fatal, but that now, medications are extending lives in these cases for 30 to 40 years or more.
Despins knows he still has cancer, though. He has to undergo scans every three months. He knows that the cancer may be there, but that it is likely that it is too small to be seen by medical imaging. But now that he is feeling better, he is trying to learn to plan for the future. For the past three years, he had stopped thinking very far ahead.
“I’m trying to allow myself to think further ahead than three months — maybe even to think six months ahead,” said Despins, as he tries to find a new normal.
“I thought I was done, but I’m not. I know the cancer will evolve and everybody’s cancer is different. But being well enough to be fit and active is good for the morale. I think we all dread that loss of control that happens when you can’t control your own health,” Despins reflected.
He acknowledges amazing support from his wife and daughter. And as he still works full-time, his workload has been further increased due to his involvement with Action Champlain, which formed in 2012 when a few people banded together to start a citizens group to fight a proposed cement plant in Champlain Township.
“But I’m really proud to be a part of the group,” Despins continued. And here we arrive at another point Despins wants to make, and that is the increasing rise in air pollution.
As air pollution increases, we are increasing our health risks, Despins says. He brought with him a copy of a CBC article which mentioned research that attributed 7,700 premature deaths caused by air pollution. He says the Eastern Ontario Health Unit should be an advocate and examine the lung cancer statistics in our area.
With a municipal election looming (October 22, 2018), Despins says voters need to choose candidates who put forth clear approaches to reconcile environmental well-being with economic development.
If we make our communities a great place to live, people will come and investment will come. Companies go where the people are, Despins says.
The telecommunications engineer holds out hope for rural development with broadband for all and increasing opportunities for companies as well as for citizens working from home and who need the bandwidth to do so.
“I thank everyone who is running. It really is a volunteer job. We need to look for leaders, not managers, with a clear vision for the future as well as a focus on quality of life, and the rights of residents,” Despins said.
Two committed Action Champlain volunteers — Gérald Pilon and Pierre Beaudry — each died of lung cancer since the group’s inception. He says that he is supporting the leadership qualities shown by Action Champlain volunteer Violaine Titley, seeking election as a councillor for the Longueuil ward in Champlain Township.
Despins said he loves this community and is optimist about its future. And to paraphrase another ALK patient, he is “terminally optimistic” about his own future, too.
If he is mindful of what he has to do keep on living, he is just as mindful of being sure to live his life. In recent months, he travelled to Maachu Pichu in Peru and before you ask, he skipped the shuttle to the top. He walked up the mountainside to the village ruins at 2,500 metres above sea level.
“To hell with Stage 4 cancer. I walked up there . . . and it was gorgeous.”