Your Multiple Myeloma Questions Answered
Pamela Kaufman | Jan 2, 2018
Cristina Gasparetto, M.D., director of the multiple myeloma program at Duke Health in Durham, N.C., began her career in the lab but made the switch to clinical work early on. She focuses on bone marrow transplant. “I love being with patients,” Dr. Gasparetto says. Because the cases she sees can be very complex, with no standard treatment, she spends a lot of time answering patients’ questions and explaining their options. Here are some of the concerns she hears.
How long do I have to live?
“When I started working in myeloma, in 1999, the median survival was three years,” Dr. Gasparetto says. “But now we can keep patients alive for many, many years. There are new drugs, new modalities, new combinations.” For average-risk myeloma, the median survival for some (not all) patients is now up to 10 years.
Does anybody beat the odds?
Thomas Goode, a patient of Dr. Gasparetto’s who was diagnosed with multiple myeloma at age 34, has been living (and thriving) with the disease for more than 12 years.
How can I have myeloma? I’m too young!
“The average age of myeloma is projected to decrease over the next 20 years,” says Dr. Gasparetto. “We don’t know why. Initially typical patients were in their 70s, but now if you read in the literature, the average age is around 64, 63. Here at Duke I have patients who are in their 20s, 30s, 40s.”
Did I get multiple myeloma because of something I did — because I didn’t eat well, or I didn’t exercise, or I was a smoker?
The answer is generally no. “Like any other type of cancer, most of the time it’s dumb luck,” Dr. Gasparetto says.
Could I have been exposed to any toxins that caused my cancer?
Certain occupations seem to raise the risk of multiple myeloma — doctors see patients who were exposed to certain pesticides at farms, for example, or veterans who were exposed to Agent Orange during the Vietnam War. “But we don’t have anything written in stone even there,” she says.
Should I have my family tested?
“I tend not to scare my patients so I say no — we don’t have any proof of a genetic link,” Dr. Gasparetto says. “The IMF (International Myeloma Foundation) is doing a huge study to try to figure out the genetic route of this disease … but we are not there yet.”
Will I ever be able to exercise again?
“Of course, the bones are heavily affected by the myeloma in a lot of patients, with more risk of fracture,” says Dr. Gasparetto. “But my patients want to know, can I play golf, or ride my bike? I encourage them to continue to do that in moderation during treatment, while their bones are still compromised, and then afterwards there will be a point where they can really go back to it. I have patients who run marathons!”
Will my pain ever go away?
Unfortunately, perhaps not. “Sometimes patients will develop chronic pain because the myeloma will completely change the structure of the spine,” Dr. Gasparetto says. Medical teams generally offer plans for pain management.
Will I ever be cured?
“The message used to be, we cannot eradicate myeloma completely,” says Dr. Gasparetto. “But now the word ‘cure’ is going around a little more freely than it used to.” She cites a Spanish group that recently presented data at the American Society of Hematology, treating early-stage patients with a very aggressive approach, including transplant, with the intent to cure. “Personally, I work with a lot of long-term survivors. Are those patients cured? I really don’t know, but I want to believe so.”