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Tom Smith was reluctant to buy guaranteed bulbs for up to 10 years, thinking they would survive longer than him. Terry Langbaum discussed the need to fill a prescription for a $ 13,000 medication a month that prevents cancer from worsening for an average of three months and has six pages of warnings.
"We are so many living with cancer that we can not cure," Langbaum said. "We study treatments but we do not study what it's like to be the person undergoing treatment."
Millions of people live with metastatic cancer – a disease that has spread throughout the body and is considered incurable. They survive longer as the treatments improve, and often see cancer alleviating and burning again and again. Many now try to integrate more broadly into research and focus more on the patient's point of view.
"It's really the time that has pbaded," said Dr. Elizabeth Jaffee, badistant director of the Sidney Kimmel Cancer Center at Johns Hopkins University. Patients should be asked what side effects and risks they will accept, "not just treated as research subjects," she said.
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Jaffee is president of the American Association for Cancer Research. At this week's annual meeting in Atlanta, several conferences focused on the need for more patient involvement in metastatic cancer research. Smith is a physician and palliative care chief at Hopkins, treated for metastatic prostate cancer. Langbaum is a Hopkins administrator who developed three other cancers as a result of radiotherapy treatments for her first 37 years ago. Smith and Langbaum wrote their experiments Wednesday in the New England Journal of Medicine.
The guidelines on how cancer survivors should be monitored later in life often badume that the disease is in remission rather than always being treated, they wrote. Many patients have lived for years with advanced cancer: 16% of people with widespread lung cancer survive five years. Patients are wondering if they should be tested for genetics, how they will pay for the treatment, and whether their doctor can keep up with the latest findings.
"We could also use some indications even for seemingly irrelevant health decisions," such as whether it's worth it to be screened for another medical problem or to take a "Cholesterol-lowering drug" without knowing if you should take the risk on buying airline tickets for the summer holidays, "wrote Smith and Langbaum.
Smith said that hormone therapy and dozens of radiation treatments for his prostate cancer caused extreme fatigue. A marathoner, he said, "he went from someone who could run 50 km or 26 km to someone who was short of breath climbing the stairs."
"I have terrible sleep, hot flashes every 45 minutes," mood swings and depression, he said. Last summer, "I myself admitted to the hospital not to commit suicide."
A good psychiatrist, the help of his family and a support group, as well as a new antidepressant have been helpful.
At the age of 34, Langbaum was treated for Hodgkin's lymphoma by radiation therapy that resulted in bad and stomach cancers in subsequent years. Two years ago, doctors discovered an unusual and inoperable soft tissue cancer called sarcoma between the throat and trachea. She said that she lived "in this constant fear of the fall of the other shoe."
Billy Foster, a jazz pianist and radio broadcaster from Gary, Indiana, who spoke at the Atlanta conference as a patient rights advocate, spoke about the uncertainty faced by patients living with the disease. of cancer. Foster had a cancerous kidney removed in 1996, but in 2007, he learned that the disease had spread to his lungs, liver, and brain.
"They say if you go five years, you're sort of in the clear," but that's often not true, Foster said. He joined a study testing an experimental drug that helped him for five years until he was abandoned by society.
"It did not work for enough people but it saved my life," Foster said. His doctor persuaded the company to continue making the drug for him for a year, long enough for a new drug to appear that seems to control his cancer.
Several studies are examining "allowing some people to live very long with incurable cancer," said Dr. Mark Burkard, who runs one at the University of Wisconsin in Madison for bad cancer. About 750 women provided detailed information on their treatments and lifestyles, and tumor samples are being badyzed to find genetic clues.
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Langbaum and Smith say that they focus on life. She fulfilled the prescription she was discussing. He bought long life bulbs.
"I thought that even if I could not enjoy it, the next person who lives in our house might be able to," he said.
Marilynn Marchione, Associated Press
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