Palliative care team helps Sandra Floyd reach the treatment goals she set for herself
BY JIM HOWE
“There are a lot of ups and downs when you’ve got cancer, a lot of wind in your sails, then the wind stops,” says Sandra Floyd as she describes living with cancer.
Floyd, 68, lives in Georgetown, Madison County, and receives outpatient palliative care at the Upstate Cancer Center as part of her treatment for adenocarcinoma of the gallbladder.
In many ways, she exemplifies what palliative care is designed to achieve as she deals with her disease:
- Figuring out what she wants to accomplish at this stage of her life, then setting goals on how to get there.
- Deciding to live with cancer without letting it define her.
- Working with her medical team to decide which treatments are best for her and how to maintain the best possible quality of life while dealing with her disease, pain and side effects.
Floyd, who runs the Fabius post office, could have retired six years ago but chose to keep working because “working gives you purpose. I usually enjoy my job, and I have a fantastic crew that works with me. If it hadn’t had been for them when I was first diagnosed, I probably wouldn’t have been able to maintain my job,” she noted.
“I lost a lot of weight initially, but other than just being tired and a couple of episodes of pain, it’s under control.
I really don’t have much pain at all anymore,” she said.
When Floyd first came to the cancer center, in the fall of 2015, it was barely two months after finding out that she had incurable cancer and being told she had, at most, a year to live.
Gallbladder cancer is rare and hard to detect early. In her case, gastrointestinal pain was the first hint of a cancer that had already spread to her lungs and lymph nodes and advanced to its most serious stage, IV B.
Since then, she has tried chemotherapy and immunotherapy, with limited success, and is
currently taking a drug being tested for new uses in the MATCH trials. (See accompanying story, below.)
That drug, Kadcyla, is used to fight breast cancer but is being tested on other cancers, and genetic testing of Floyd’s tumor suggested she could benefit.
Floyd developed a low platelet count as a side effect of the drug. This endangered her blood’s clotting ability and forced her to withdraw from the trial.
She was able to keep taking the drug at the cancer center, however, where she is getting more time between doses to allow her platelets to recover, says her medical oncologist, Stephen Graziano, MD, Upstate’s chief of adult hematology and oncology.
The drug “delivers a toxin directly to tumor cells,” Graziano explained. “It’s greatly benefiting her.”
“She’s pretty remarkable. We hope she keeps doing well for as long as possible,” Graziano said. “Our goals are control, remission, shrink it down and improve her quality of life, we’ve been able to do all those things for her.”
He noted a trend to get palliative care involved right at the beginning for advanced cancer cases, to help the patient deal with pain, quality of life issues and decisions about treatment.
Dealing with those issues is just what Linda Troia, a physician assistant on the cancer center’s palliative care team, has helped Floyd to do.
“One of the things I respect about Sandy is that she is someone who had cancer, and from the beginning, her goal was for it not to define her. She is aware she has it, doesn’t deny it and takes care of it, but she tries to live the best quality of life. She has been able to continue a life pretty much like her pre-cancer life, and it hasn’t been an easy task. She really focuses on living,” Troia said.
“Something that I believe helps people is having goals. To continue to work is meaningful to her. Having goals you work toward gives people a sense of purpose, and that is important because for some people cancer strips away that purpose. When they don’t have confidence in looking toward the future, they start to get stuck, depressed and lose their sense of purpose.
“The goal helps to keep you motivated but reminds you of who you are and who you were before the cancer and, what makes you hold on,” Troia said.
Floyd gets emotional support as well as medical care from Troia. “Linda has given me pep talks every time I come in, she does my pain meds and some of the other meds for me, and she is basically just a shoulder to lean on. It’s been really good,” Floyd said.
MATCH trials and ‘precision’ cancer care
The National Cancer Institute sponsors tests of cancer treatments that analyze a patient’s tumor and take direct aim at certain genetic changes.
If patients have a tumor with the genetic changes that match a drug being tested, they may be eligible to take part in a trial.
This is a type of “precision” medicine, meaning it is tailored to the specific patient. While precision cancer treatments are progressing rapidly, they not yet routine nor available in all cases.
These trials are for patients with rare cancers or advanced cancers who have gone through standard treatments.
The name MATCH stands for Molecular Analysis for Therapy Choice.
— Source: National Cancer Institute
Advice for those in the same boat
What would Sandra Floyd, who has outlived her original survival estimate by nearly two years, tell someone who has gallbladder cancer?
“Don’t believe everything you read about it. It’s not an immediate death sentence. You just have to make up your mind to take care of yourself, don’t dwell in the negative as much as the positive, and just keep going,” she said.
“I would also tell people to check for any drug trial out there.”
This article appears in the spring 2018 issue of Cancer Care magazine.