Linnea Olson, an artist and shop owner in Lowell, Mass., knew the experimental drug she was given might save her life. She also knew it might kill her.
Olson, who had been diagnosed with a form of lung cancer, had exhausted conventional chemotherapy options several years ago when her oncologist told her about the drug — one that might successfully treat a mutation in her tumor. As one of the first patients to receive the drug, Olson said she had no way of knowing whether it would be toxic.
“But when you’re chased by a bear to the edge of a cliff, you jump,” Olson said.
Olson jumped — not once, but three times over the following years, each time trying a new targeted therapy that worked for a short period, until she became resistant to the drug. Today, Olson’s health remains stable, but she’s nervous: There’s no obvious next treatment.
The growing ability of medical science to pull patients back from the brink of death is a credit to targeted therapies, in which doctors search a person’s tumor for a genetic mutation that controls the disease, and deliver a drug to counteract the mutation.
In many cases, the results have been nothing short of extraordinary. Some breast cancer patients treated with a drug called Herceptin, for instance, have been living cancer-free for more than a decade. But more typically, the effects of the drugs wear off after six or nine months.
For patients like Olson and others, the therapies have led to emotional exhaustion from facing death over and over again: repeatedly saying goodbye to loved ones, making preparations for the end of their lives, and dealing with uncertainty.
“There is just a resounding emotional thud when you are forced to acknowledge that the world will go on, but that it will do so without you,” Olson said.
“The feelings that I am least proud of were that some other woman would step into the void where my life had been. It was so, so hard.”
Dr. Vicki Jackson, an internist and chief of palliative care at Massachusetts General Hospital in Boston, said the impact is heightened because targeted therapies work so well for some patients.
“It’s amazing, because people can live like they don’t have cancer, just by taking a pill,” she said. “But patients either expect it’ll happen forever, or the roller coaster ride of waiting to see whether there’s another trial drug … gets incredibly stressful.”
In some ways, such issues are not new to cancer treatment.
Patients with certain forms of lymphoma, for instance, can experience prolonged remissions repeatedly. And those who experience disease recurrences frequently respond to second-line and third-line chemotherapy regimens for limited periods before growing resistant to the drugs.
Still, Jackson said, most patients who undergo chemotherapy after a recurrence follow a more steadily downward trajectory.
“With targeted therapies, it’s like the disease melts away and patients feel almost like themselves,” she said. “They’re not getting signals from their body that time is shorter.”
When the disease does return, patients’ conditions can deteriorate precipitously, leaving them again to confront the emotional, physical, and logistical issues that come at life’s end.
Phyllis Merchant, of Ashland, Mass., said her sister, who had lung cancer, had undergone four targeted therapies when one stopped working last December. Her liver had failed and the medical team told her she had only a few days to live.
Merchant’s sister called close friends and family to her hospital room, including her husband of 35 years, two adult children, and two grandchildren who’d been living in the family’s home for years.
“It was incredibly hard, but she found the emotional and physical strength to share final moments with the people closest to her,” Merchant said.
Then, a late round of genetic testing revealed that she had a mutation that might be susceptible to another targeted treatment.
“She was overwhelmed by the thought of re-engaging with daily life, knowing she would later need to say her goodbyes and make peace with dying all over again,” Merchant said. “Because her health declined so quickly, as a family we weren’t prepared yet for her to go. She understood this, and also wanted to spare us from her dying near Christmas.”
She went forward with the treatment and quickly responded — so well, in fact, that she was able to spend Christmas with her family, return to work, and enjoy more than five months of relatively good health. When she relapsed and grew very ill again earlier this summer, her oncologist approached her about seeking yet another treatment, and she declined. She died in July.
“We all accepted her decision, knowing it’d be too hard for her to come back from the brink again,” Merchant said. “At the same time, having experienced one ‘near-miracle’ recovery, I found it difficult to give up hope for another.”
Dr. Cardinale Smith, an oncologist and palliative care specialist at Mount Sinai Hospital in New York, said such issues have become common.
“I haven’t had a patient decline treatment yet, but I’ve seen folks struggling with it. The struggle is real, and I don’t have a good answer for it,” she said. “The science is taking off, and we’re scrambling to figure out how to deal with it.”
Smith said patients grow fatigued from the treatment themselves, “but it’s also depression and anxiety around the uncertainty of their prognosis. It’s like, ‘I’m feeling better again, but how long will it last? And how do you plan your life around that? Do I keep working? Do I spend it all in Las Vegas?’”
Only about 20 percent of cancer patients can benefit from targeted therapies, said Dr. Thomas J. Lynch Jr., the chief executive of the Massachusetts General Physicians Organization and formerly the physician-in-chief of Smilow Cancer Hospital at Yale-New Haven.
That number is expected to grow steadily, though. The Obama administration has pledged $215 million in federal funding in 2016 for so-called precision medicine, an approach that is based largely on targeted therapies and that stresses treatments based on individual patients’ genes and other characteristics.
Immunotherapy, which stimulates a patient’s immune system and can include targeted genetic components, is also becoming more common.
Meanwhile, the rise of targeted therapies has complicated discussions about how best to manage the end of one’s life when the endpoint can suddenly vanish.
“I see it with many patients,” said Dr. Alice Shaw, an oncologist at Mass. General. “These options are coming out so fast and the results are so dramatic, it’s made end-of-life care even more complicated than it already was.”
Olson, the Lowell artist, knows just how complicated it can get. Before she began her first targeted therapy in 2008, she was told she had only months to live.
She said the next few months were emotionally tumultuous, as she ruminated over never having the chance to see her younger son grow up or to see her grandchildren.
Olson said she tried to “soak in all the love and memories I could, not only with the people in my life but with life itself.”
Today, with her youngest in his senior year of high school, Olson has managed to find peace amid the emotional swings. In addition to opening a new store, she plans to start actively dating.
“I’ve always been someone who’s able to embrace change and uncertainty, so in some ways I’m more ideally suited than some people are to this,” she said. “It’s very bizarre. And I’ve seen it break some people — the fear of the thing that’s going to catch up to you.”
My heart breaks for this woman and her family. I have a form of lung cancer which currently is non active. Living with the knowledge it will return at anytime is always running through my mind. It is difficult, at best to be on this emotional merry go round. You look into your children/grandchilren’s eyes and think to yourself, when it returns how will I handle it, how will they handle it, will therapy be as effective, who will be here for them, those thought are small compared to other rambling thoughts. Without being negative, yet being realistic, I feel if I have 3 more years I will be in the minority. At the same time thoughts of so many others aren’t given that long. At best it is like being on the world’s first never ending emotional roller coaster ride never knowing when or how the fear of the ride will come to a final stop.
I am so sorry you have to go through this. But I sincerely hope that you’re sharing these thoughts and feelings with your family, because they are absolutely having thoughts and feelings that are very similar. Y’all need to talk about them, if you’re going to have any chance of coping with something like grace.
I work with *so many* families who never did talk about any of this, despite months or years of declining health, worsening diagnoses, even hospice care. (It never fails to blow my mind, when I sit down to make funeral arrangements for someone who’s died of cancer, after weeks or months of hospice care, and the next-of-kin says, “I don’t know what they wanted, we never talked about it.”) I understand that it’s a damn difficult conversation, and I even understand that a lot of folks have a deeply ingrained, almost superstitious, fear of “speaking it and making it come true.” Like if you prepare for it, you’re telling the universe you’re ready and willing for it to happen.
It also pisses me off to no end when the surviving family speaks of the deceased “giving up” and “not fighting hard enough,” of hospice nurses who “didn’t even try to help” because they weren’t administering curative therapy, “only” palliative care.
When my husband’s grandmother died, at the age of 74, of cancer that she’d spent three years fighting — even though, at first diagnosis, she said “that’s okay, I’ve had a good life,” and only consented to chemo and radiation because her family begged her to do so —- at her bedside, those last days, none of her middle-aged children were saying “I love you, Mom, thanks for everything, you go ahead and be at peace now.” They were sobbing, “Mom, you can’t leave us, you can’t go yet, we still need you so much.” I know, of course, that this was their expression of love. But to lay that burden of guilt and abandonment at her feet at a time like that . . . I still feel like punching a wall when I think about it. It was the least merciful thing I’ve ever witnessed, and it made me sick to my stomach and my heart.
I hope, more than anything, that your family is better than this. That they will respect and honor your wishes and decisions, that they will embrace the time they have with you, and not force you to suffer one minute past what you’ve declared “enough.”
We all deserve a good death. It really sucks that so few of us know what that means, or how to accomplish it.
I wish you luck and love and compassion. Right now, though—- mostly luck 😉
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