“Cancer doesn’t care about the virus. It will still grow, spread and kill us,” said Angela Oliver, a metastatic breast cancer patient whose treatment has been put on hold until the COVID19 pandemic subsides.
Oliver, who lives in the United Kingdom, was hoping to get into a clinical trial when her cancer progressed in March. But as the corona virus takes root in Britain, cancer trials have been suspended, as researchers shift their focus to work on vaccines to curtail the virus.
“Mentally, it’s extremely difficult to accept that the already limited options for patients like me have been so easily ripped from our grasp,” she said.
Lori Burwell, a metastatic breast cancer patient living in Virginia in the United States is in a similar situation. Her cancer progressed after being on clinical trial offered at Memorial Sloan Kettering in New York City. She’d like to get into another trial for the drug Tucatinib which has shown great promise for her type of cancer.
Dealing with progression of metastatic cancer is difficult enough under any circumstances. But now, with COVID19 taking hold in cities where research hospitals are located, clinical trials options are becoming scarce and patients such as Oliver and Burwell are forced to stay on medication that either isn’t working or waiting anxiously for new treatment options that have limited benefits.
“I’ve had my tumor profiled and have been found to have inherited faults in my ATM gene,” explained Oliver. “ If this gene has complete loss of expression, I’ll be eligible to join a phase 1 ATR trial. Luckily I signed consent before trial centers stopped recruiting new patients. My oncologist has decided to keep me on Capecitabine while we await the results of this. If I can’t join the trial, I have no idea what my next steps will be.”
Burwell finds her situation disheartening because it forces her to return to her local oncologist whom she doesn’t trust.
“He is dispassionate, dismissive, arrogant, and short with me. I have always felt as if he views me as a failure because my cancer metastasized. He didn’t cure me,” she said.
Clinical trials often mean moving to a new doctor who heads the research team. For people like Burwell, it can mean traveling long distances for treatment. With New York City now an epicenter of the corona virus, further treatment at the research center isn’t an option until the virus is contained.
So how does one cope with the competing threats of an out-of-control virus with no cure that could prove fatal and limited or delayed treatment options for cancer that is spreading?
“I’m spending a lot of time cooking and gardening to take my mind off how bad things could get for me,” said Oliver.
“I work in my garden. I read. I am painting the interior of my guest cottage,” said Burwell, who lives in an old beach house and uses the cottage as a guest bedroom. “My adult children who have been isolated for almost a month like I am but in their homes in northern Virginia are coming this week for a visit. I need to see them and we are wasting time I may not necessarily have.”
Both women say they have their moments when it all seems overwhelming.
“I’m generally coping okay, but I did recently have a meltdown when I entertained the fact that I might not get out of this lockdown alive,” said Oliver.
“I am very discouraged,” said Burwell. “ I am still asymptomatic, with plenty of energy and work out to online videos and walk (apart from everyone) to burn off my nervous energy.”
Burwell’s advice to anyone in a similar situation: Continue to be your own best advocate. Be pushy. Have your questions ready. Stay unemotional. Pursue a second opinion if possible, via telemedicine (an option that’s not currently available in the UK as doctors are not accepting new referrals at the moment, according to Oliver.) Keep your body in the very best shape you can by eating well and exercising.
“We don’t know what will make a difference in surviving this virus should we get it, but we do know that eating well and working out improves quality of life for cancer patients,” said Burwell.
“I’d say to anyone going through a similar experience, don’t give up, hang onto hope. Continue to research your options, so when we do get out of this you have your weapons at the ready,” said Oliver. “You have to know what you want, before you can fight for access to it. If there’s one thing cancer has taught me, it’s that we have to have our own backs and advocate for ourselves. No one cares more about whether you make it or not more than you.”