Dr. James Berenson Discusses Pomalidomide Plus Doxil in Multiple Myeloma
Facing Myeloma Cancer Recurrence
Myeloma patients have to face the reality that cancer recurrence is likely, even if their myeloma is currently under control. Get tips for living in remission without fearing a relapse.
By Madeline R. Vann, MPH
Medically Reviewed by Lindsey Marcellin, MD, MPH
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Myeloma is a challenging cancer to live with. Even when successful treatments have myeloma under control and in remission, the cancer is rarely “cured.” This means patients must live with the knowledge that at some point, cancer recurrence is likely.
Even when in remission, myeloma patients should have regular check-ups, an important part of identifying cancer recurrence early. “Our patients are taught the [signs] of their particular kind of myeloma from the beginning and how they are reported and followed by the myeloma team,” explains Bonnie Jenkins, RN, at the Myeloma Institute for Research and Therapy at the University of Arkansas for Medical Sciences in Little Rock.
This education, says Jenkins, includes giving patients access to their lab work and other tests. “They are encouraged to participate in learning and growing through this new adventure,” she says. “If the myeloma returns, they are a part of already knowing or by us telling them early in the game.”
Learning about myeloma helps you understand how the cancer operates. “Being in remission with myeloma is not the same as, say, breast cancer. The solid tumors behave differently from liquid tumors like myeloma, leukemia, and lymphomas,” Jenkins says.
Dealing With Cancer Recurrence: The Outlook
Patients often struggle with the concept that while treatment has controlled their myeloma, they are not cured in the same way that all cancer cells of a breast cancer tumor can be removed or destroyed. The knowledge that myeloma is still present in their body, even though it is not currently causing problems, can make dealing with cancer even more difficult.
For some patients, news of recurrence may be a surprise, especially if they are feeling well or have attributed vague feelings of ill health to other causes. Sixty-one-year-old Paula Van Riper, assistant dean for academic advising at Rutgers University in New Jersey, has lived through two recurrences of myeloma in 10 years. She often refers to her feeling after diagnosis and recurrence as “surreal.”
Van Riper says she never felt as sick as she had expected to with her cancer. Her second recurrence began with lower back pain that she initially thought was due to her long-time struggle with arthritis, until tests revealed otherwise. Van Riper eventually founded a myeloma support group in her community and reports that she was pleasantly surprised to find that other people with myeloma also looked “surprisingly good.”
Not much can be done to prevent recurrence. Researchers continue to test and create treatments that extend myeloma patients’ lives by lengthening the time that myeloma is in remission. Treatments such as stem cell transplants and drugs like thalidomide have made significant differences in the length of time patients can expect to live in remission.
Supportive care, such as medications that help strengthen damaged bones, are also helpful. They may not prevent recurrence, but they can improve your quality of life while the myeloma is under control.
Dealing With Cancer Recurrence: Coping with Fear
For many people, knowing that cancer recurrence is inevitable may become an obsession. Fear of recurrence can seriously impair your quality of life. Because recurrence is unpredictable, you may spend too much time worrying about it.
Van Riper says that so much time had passed after her successful stem cell treatment that by the time her regular check-ups revealed a recurrence, she had almost forgotten about the possibility. She offers these tips for dealing with cancer and its uncertainty:
- Stay active.Van Riper continued to work full-time at a job she enjoyed, stayed involved with her family, and traveled more than she had previously, in part because she had a greater appreciation for life. Staying active and engaged also took her mind off her diagnosis.
- Get educated.Learning about myeloma and reaching out for support from online or in-person support groups gave her valuable information. She felt more prepared to make the decisions about eventual treatments.
- Be positive and hopeful.Van Riper says, “I have a glass-half-full view. I feel like I got 10 more years than I was supposed to have.” She says the prognosis for myeloma is often reported as bleak — there was a 2.5-year life expectancy when she was diagnosed, which has improved to four years now. However, many people outlive these projections.
Dealing With Cancer Recurrence: Work With Your Doctors
Jenkins emphasizes that the key to working with your doctors during a cancer recurrence is to see yourself as an active team member. Besides having regular check-ups and educating yourself about the disease, you also should learn about the latest treatments. Many patients are given a menu of options based on factors such as age, stage of cancer, and overall health. Arm yourself with information before you have to make these important decisions.
Cancer recurrence is a strong possibility, even if you feel great and your myeloma is under control. However, with the right attitude and preparation, you and your doctors can manage the situation together.
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