'Seize Each Moment,' Urges Multiple Myeloma Survivor

It should have been one of the most exciting times in her life: Carmen Phaneuf and her husband were planning on starting a family. Instead, Phaneuf’s pre-pregnancy blood work showed something she couldn’t have imagined — that a cancer diagnosis could be in her future.

“I was in the prime of my life,” Phaneuf told CURE in an interview, recounting her life in 2002. “I was 34 years old, running, had just come back from a year-long sailing trip living on a sail boat, and I’ll never forget hearing about it. We were riding our bikes and received a call from the oncologist. That day changed our lives.”

The doctor told Phaneuf that she had MGUS, which is when an abnormal protein — known as monoclonal protein or M protein – is in your blood. MGUS can progress to multiple myeloma in about 20 percent of individuals over the course of their lifetime. For Phaneuf, it did so in 2011.

Phaneuf, 48, shared her personal cancer journey on Oct. 1 during a Multiple Myeloma Research Foundation (MMRF) Patient Summit at the John Theurer Cancer Center in Hackensack, New Jersey, a gathering of nearly 200 patients with multiple myeloma, caregivers and health care professionals for a day-long learning experience.

Phaneuf explained that she owes a lot of her positivity and hope for a longer life to her doctors, David Siegel, M.D., Ph.D and Michele Donato, M.D., as well as the MMRF, which she says continues to give her hope that someday there may be a cure.

With her doctors’ blessings and appointments to make sure she was stable, Phaneuf, 34 at the time, gave birth to her daughter, Rachael.

Then, nine years after her initial MGUS diagnosis, Phaneuf was diagnosed with multiple myeloma.

“It was May 6 and I was volunteering at a PTO function,” she said. “I had had a close relationship with my nurse practitioner at the time at the cancer center, and she called and she said, ‘There’s a tumor on your pelvis. We need to start treatment. You have multiple myeloma.’ The day that those words rang in my ears is one I will never forget.”

Three months later, in September, she started chemotherapy after deciding she wasn’t missing out on the vacations her family had planned for that summer. In January and May of 2012, she underwent two autologous stem cell transplants, which means her own stem cells were collected and transplanted. In January of 2015, she relapsed. Her doctors suggested an allogeneic stem cell transplant, in which stem cells would be taken from a matched donor. Phaneuf was hesitant to undergo this procedure at first because of the risk of death, but she realized it may be her best option — her high risk type of myeloma wouldn’t do well with only chemotherapy.

Phaneuf found her perfect match in a 23-year-old man from Germany and had the transplant this past March. Ninety days later, she was out cycling again, and six months and one-day post-transplant she competed in an Iron Girl competition.

“My family and doctors motivated and counseled me into doing the allogeneic transplant,” said Phaneuf. “I was going to proceed with grace and strength and show my daughter that mommy is not sick. Mommy is going to get a treatment that's going to let her live for a long time. It was a very difficult and personal decision, one I do not regret.”

Phaneuf is in partial remission and is close to being off her immunosuppressant drugs. “There is a chance for a cure, but I’m looking for a long remission, drug-free,” she noted.

Phaneuf continues to remain active in her community and with the MMRF, raising thousands of dollars for advancing myeloma research. Multiple myeloma is the second most common blood cancer, yet still uncommon at less than 2 percent of all cancer diagnoses. In the past decade alone, there have been significant improvements, including the approval of 10 new drugs.

During the summit, leading medical minds in the field explained that there have been extensive advances in clinical research. The most significant, said Siegel, is the MMRF CoMMpass study. The CoMMpass study, is the cornerstone of the MMRF’s Precision Medicine Initiative, capturing the largest genomic data set in multiple myeloma. This study follows 1,000 patients throughout the course of their disease. By mapping each patient’s genomic profiles to clinical outcomes, CoMMpass is enabling precision medicine in multiple myeloma patients — delivering the right treatment at the right time.

While the improvements are exciting, there is still no definitive path towards a cure. However, Phaneuf explained her feelings about living life to the fullest.

“For cancer fighters, as I like to call us, never give up hope. The mind plays a huge role in how we do throughout this journey. The word ‘believe,’ the phrase ‘carpe diem’ are very strong for me. I am seizing the moment, trying to make every day count in some way.”