Living with multiple myeloma: Bob's story | City of Hope
Living With Myeloma — One Woman's Story
Paula Van Riper has been living with myeloma since 1999, when a constant ache in her thigh turned out to be a tumor. Since then, she has been managing myeloma by using the latest treatments available.
By Madeline R. Vann, MPH
Medically Reviewed by Cynthia Haines, MD
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For Paula Van Riper, myeloma began with a twinge in her thigh that came and went. This minor ache, which eventually turned into constant pain, gave no hint that Van Riper would spend the next 10 years living with myeloma, a relatively rare bone cancer.
At 51, Van Riper was divorced with two adult children and working as a student adviser at Rutgers University in New Jersey. An active person who enjoys bicycling, Van Riper also was never one to let pain stand in her way. So when the pain in her thigh persisted, she went to her chiropractor, who advised her to see her primary care doctor, who sent her to an orthopedist. After this bone specialist took an X-ray, he thought he saw a hole in her bone.
Further testing revealed that a tumor, not a hole, was endangering the upper part of her thigh, which explained the pain she felt. Van Riper also learned that she was close to shattering the bone, which could spread the tumor through her marrow.
The Challenge of a Myeloma Diagnosis
Treatment was immediate. By week’s end, she had received a hip replacement and learned that the tumor had not spread beyond that space and her myeloma was under control. She also began to learn about the disease. She found out that her myeloma diagnosis was made more quickly than most, and that patients learn about the existence of their disease in various ways. “Myeloma is a very individualistic cancer,” Van Riper explains.
But even the speed of her myeloma diagnosis didn’t help the situation register fully with Van Riper. “This was all very surreal,” she recalls. “The whole time I am thinking this is a movie and I’m playing the part of someone who is sick, but I am the only one who knows I’m really not.” What also played into the surreal feeling: Other than her recovery from the hip replacement, Van Riper was healthy, energetic, and still working full-time.
With the tumor removed and no sign of it spreading to other sites, Van Riper was first told she would have to “wait and watch.” She was not free of myeloma, but no treatments were available that could cure it or prevent its return. That wasn’t easy to hear, she says. More difficult still: There was no way to predict when she would relapse and that, with a history of bone involvement, the cancer would return.
At this point, Van Riper turned to the International Myeloma Foundation, drawing heavily on the support offered by its online community and patient-family seminars to learn about living with myeloma.
Managing Myeloma: When The Cancer Returns
Three years later, Van Riper was still working full-time when testing revealed that myeloma was gaining strength. “Again, on paper I looked worse than I felt,” she recalls, adding that many myeloma patients feel fatigued or have other symptoms that she never experienced.
Her doctors told her about the range of treatment options available, from aggressive stem cell treatments to less aggressive medications. After some debate, Van Riper made a choice that she says is counter to her character: She took a risk and opted for stem cell treatment, which could buy her more time without a relapse — and it did.
Van Riper had two adult stem cell treatments six months apart; the first with her own stem cells and the second with stem cells donated by her younger brother. The treatments gave her five years without a relapse or the need for any other treatments.
In 2007, increasing lower back pain led to the discovery that myeloma was again affecting her bones. She had a compression fracture in a vertebra. A PET (positron emission tomography) scan revealed three more tumor sites. Radiation and chemotherapy ensued.
The doctors started Van Riper on a three-drug regimen: bortezomib (Velcade), dexamethasone (Decadron), and lenalidomide (Revlimid). She received the bortezomib and dexamethasone in a twice-weekly infusion, two weeks on, one week off. The lenalidomide was in pill form. She experienced side effects, like blurry eyes, insomnia, and gastric problems, but these didn’t warrant stopping the treatment. She took additional medications to ease those side effects, with some success. "The good news is my cancer markers in my blood showed a very positive response to this combination after only two cycles," she says.
Van Riper stopped taking the regimen because she developed nerve complications (neuropathy), which is the most common side effect of bortezomib. Doctors will retest her to see if the cancer responded to the treatment she just had. “Chemotherapy is now more targeted and there are fewer side effects, but they all come with a price,” she says, adding that she doesn’t encourage other people to make the same choices she has made, in part because the myeloma experience is different for each person and because myeloma treatments change so rapidly.
Living With Myeloma
“This is the best and the worst thing that has happened to me,” says Van Riper, admitting that she has lived longer than she expected.
When she first received her myeloma diagnosis, before newer drugs were available, she was told median life expectancy was 2.5 years, but she has lived four times that long. And in the process, she has traveled extensively, continued to work full-time at a job she enjoys (she is currently an assistant dean for academic advising), and has been more engaged in her life than she thought she could be.
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