These new drugs seem to be my last chance for survival. They are small molecules that can easily cross the hard-to-penetrate blood-brain barrier and get into the brain. By contrast, the antibodies employed in immunotherapies are large proteins, which, if taken orally, are quickly digested like all other protein products that we eat. That’s why they have to be given as infusions delivered directly into the bloodstream. Immunotherapy drugs don’t actually get into the brain; instead, they modify immune cells (T cells), which can reach the brain. Trametinib and dabrafenib come in the form of very innocent-looking pills, which is much more convenient than an infusion; I won’t have to go to the hospital to receive my doses.
But these drugs are not FDA-approved for my rare mutation so we need to convince my insurance company to pay for them. This may be a serious challenge because the scientific evidence that they will work for me is scant, at best. And the treatment is going to cost a fortune: hundreds of thousands of dollars. Dr. Atkins predicts that the insurance company will deny his first request, and within a few days, it does just that. Jake’s mother and her husband offer to cover the full cost of the drugs, and Mirek’s mother, in Poland, wants to send us her life savings. But Dr. Atkins suggests we wait. He’s hopeful that he’ll find scientific support to get me the drugs for free or at a minimal cost.
Dr. Atkins writes a detailed letter explaining that my rare BRAF mutation warrants treatment with these drugs. We wait a day, then two. Then another day. On the fourth or fifth day, Dr. Atkins calls me: The drug company has agreed to give me the drugs for “compassionate use.” This term refers to using a new, unapproved drug to treat a patient when there are no other options. In other words, She’s going to die anyway, and there’s a slight chance this might help, so why don’t we try it as a last resort? The treatment will be free.
Within a few days, I receive two boxes, one the size of a countertop refrigerator filled with ice and my very pricey dream drug trametinib, and a smaller one containing the dabrafenib. Excited, I take pictures of the boxes. What a joy! Christmas in July!
They have to work—they’re far too expensive to fail me.
I immediately swallow the first dose of the pills. And wait.
A few days go by without much of an effect. Then the rash appears.
Skin inflammation is one of the most common adverse side effects of the trametinib/dabrafenib treatment. This reaction to the drugs is experienced by more than half of patients who take them. The two-drug combination, in contrast to each drug by itself, increases the toxicity. There’s only one pleasant side effect, which comes out of the blue: my eyelashes grow very long, lush, and coal black, the bottom lashes brushing the tops of my cheeks.
Since I have insomnia from the steroids, I get maybe two to three hours of sleep at night. I’m very tired and catnap frequently; I add sedatives and sleeping pills to my growing medical arsenal. Yet I continue power-walking every day, as far as eight miles, in the early morning or at sunset to avoid sun and heat. I cannot swim because of the rash and my very dry skin, but I bike from time to time in the early morning, sometimes for an hour and a half. Like a soldier always ready for battle in this protracted war with cancer, I am determined to stay in shape.
By mid-July the rash explodes with a force we had not expected. Scary reddish welts cover large areas of my body, and my skin feels as if it’s on fire. Dr. Atkins decreases the dose of dabrafenib by half (since it is likely to be dabrafenib, rather than trametinib, that is causing the rash). A few days later, less than two weeks after I started taking one of the drugs upon which all my hopes are pinned, he directs me to stop taking it entirely because my whole body is covered in horrific splotches. This type of out-of-control rash can actually endanger my life, he tells me.
Still, my mind seems to be working well. I am able to read, keep notes, and hold teleconferences with my colleagues at work.
I am coming back to life. But my family and I don’t talk much about what we experienced during my mental decline and crash. We’re terrified that it will return without warning.
I’m scheduled for another brain scan on July 21. It will be the first one I’ve had since the catastrophic MRI on June 19 that revealed the new tumors and swelling in my brain. Strangely, I’m not worried about this upcoming scan. I’m resigned to hearing bad news again, so I continue planning for death. I clean out my closets and drawers, the accumulated stuff of my life. But deep inside, against all odds, I am hoping for a miracle.
On July 21, a few hours after the MRI, Mirek, Kasia, and I gather in a room at the Lombardi Comprehensive Cancer Center and wait for Dr. Atkins to deliver my sentence. The wait is long. It’s late afternoon, and we’re all very tired. Our anxiety is so intense that we don’t talk to one another but stare into the distance, biting our nails, breathing deeply, and sighing.
Finally, Dr. Atkins walks in. He is beaming.
“Great news!” he announces. “It worked!”
Before we can absorb his words, he continues. “All of your tumors shrank considerably or disappeared altogether, and there are no new lesions in your brain,” he says. “The trametinib/dabrafenib combo therapy was a success!”
Instead of focusing on this remarkable news, I start to argue.
“Dr. Atkins, how do we know?” I say. “How can we attribute my improvement to dabrafenib and trametinib? I was taking them
