The uncanny symptoms that led to a Detroit filmmaker’s multiple myeloma diagnosis

“I thought I was invincible.”

In 2019, at 40 years old, Paris Jones was healthy, active and thriving as a metro Detroit-based filmmaker. He exercised daily and ate a nutritious diet, so he attributed his recurring back pain to rigorous workouts and basketball games.

“The pain would come and go, and I thought I would just tough it out,” he said. “I wasn’t really a person who went to the doctor for any reason. I was terrified to see a doctor because I was afraid of hearing something was wrong.”

In July of that year, Jones went to a local Emergency Room because he developed pneumonia. While there, he discussed his back pain with the ER doctor, who ordered an X-ray. Jones said he was given pain medication for his back and treated for pneumonia. He recovered from pneumonia and started feeling better, but the back pain persisted.

Around the end of summer that year, the pain had worsened, but he did not seek further medical attention. At the time, Jones did not have a primary care physician.

Not only did Jones continue to “tough it out” through severe pain, but he also continued working through it. That fall, Jones had a business and family trip to California, Arizona and back to Michigan. Jones went to Los Angeles (LA) ahead of his family, which included his wife, Alison, and their three children. While there, he experienced scary symptoms but did not see a doctor.

“I sneezed, and my back shattered. The sneeze popped my spine and a few bones broke. I couldn’t walk. I was frozen!” Jones exclaimed. “After a while, I could move a few inches but couldn’t walk.”

Jones said he also started to experience bleeding from his mouth and nose. He even awoke one morning to find his sheets covered in blood. He painstakingly kept his symptoms from his family, who had joined him in LA by then.

“I didn’t want to freak anybody out,” he explained.

Through all of this, Jones still did not go to a doctor. He even had to use canes and wheelchairs during a family trip to Disneyland.

After a week, he started his drive back to Michigan, with a stop in Arizona, all the while in pain and unable to walk freely without support. After the day-and-a-half drive from Arizona, Jones returned home to Michigan. Upon seeing his condition, Alison, who had returned home with their children earlier, and her mom immediately rushed Jones to a local hospital emergency room.

“My lungs were failing. I was in kidney failure. I had to have a blood transfusion,” Jones said. “Within 20 minutes of running tests, a doctor came back and told me, ‘You have cancer.’ At that moment, all I could think was, ‘How long do I have?’ I couldn’t believe this was happening!”

Jones learned his cancer was very aggressive. He was diagnosed with multiple myeloma. He chose to seek treatment at the Barbara Ann Karmanos Cancer Institute in Detroit.

Multiple myeloma: What is it and who develops it?

Multiple myeloma is a form of blood cancer.

“Specifically, plasma cells become cancerous in the bone marrow,” explained Jeffrey Zonder, M.D., hematologist and medical oncologist, leader of the Multiple Myeloma and Amyloidosis Multidisciplinary Team (MDT) and member of the Hematology Oncology MDT at Karmanos. Dr. Zonder is also part of the team who treated Paris Jones.

“As those cancerous cells overgrow, it can cause problems in the bone marrow and other symptoms in the body,” Dr. Zonder explained. “These symptoms include unexplained anemia, improper kidney function and persistent back pain.”

Multiple myeloma is the second most common blood cancer and becomes more common as people age. It is more frequently diagnosed in men, and African Americans have twice the risk of developing multiple myeloma in their lifetime than White Americans. According to Dr. Zonder, the root cause for this increased risk has not been determined, but a great deal of work is being done to learn more. He pointed out The Promise Study, a national study that is the first to test healthy people who may be at risk for early warning signs of multiple myeloma.

Jones’ multiple myeloma treatment journey

Later that year, Jones began his treatment. He underwent chemotherapy for a year and a half and eventually had a bone marrow transplant.

“The preparation process for the stem cell transplant was emotionally and physically challenging,” he said. “A lot of tests, shots, medication, and meetings.”

The chemotherapy treatment and transplant took a toll on Jones’ body. The myeloma had caused a lot of bone damage, which affected his mobility and made it harder for him to tolerate some parts of his therapy.

“That limited me from working a lot and doing my normal activities,” he explained.

“The specific chemotherapy agents Jones has been treated with are standard of care for myeloma patients, but certain aspects of the regimen needed to be modified, given the health issues he was already facing from the outset,” explained Dr. Zonder.

Jones is grateful for the care he received at Karmanos. He credits Karmanos physicians and care teams as part of the support system that saw him and his family through the roughest times of his treatment. Jones is currently on maintenance therapy and takes a daily chemotherapy pill to control his multiple myeloma.

“Newer myeloma therapies are constantly being studied. If Paris’ current treatment starts becoming less effective, his options would likely include either other standard or newer agents only available through clinical trials.

“There really is no formal recommended screening test for multiple myeloma, and there are no specific measures that one can take to prevent myeloma.” Dr. Zonder continued.

He advises that seeing a primary care physician for regular physical exams, including regular lab work, can be a powerful tool in identifying and addressing any unexpected health issues. Seeing a primary care physician routinely is a message Jones now shares with anyone who will listen.

Getting the message out: A story of survival that defies the odds

These words could be the opening lines of the trailer for Jones’ upcoming documentary about his journey with multiple myeloma. His documentary is in the final stages of production. He details the process that set him and his family on the path to informing and inspiring others in this film. Jones hopes to have the documentary featured at several film festivals, spreading his message across the country and the world.

Alison is also spreading awareness about multiple myeloma and messages of hope. She runs the family business, an online apparel and merchandise brand bearing inspirational and encouraging messages and quotes with Paris’ mantra, ‘I’m just happy to be alive.’ Alison started the business just months after Jones’ diagnosis.

“I started the business to supplement Paris’ income while he couldn’t work. When Paris came home from the hospital, he wasn’t able to do anything for himself, and I had to take a month off work to care for him,” Alison explained.

She said family and friends supported them in many ways, including purchasing merchandise. Today, she wants their uplifting messages to give others hope through any hard times they are experiencing.

“That’s how my brain works. How can we turn this into a positive? We will use this very unfortunate diagnosis to help our family and help others.”

Jones knows his story could have had a very different outcome. After his shocking diagnosis, going through treatment that included daily chemotherapy and eventually a bone marrow transplant, he is grateful to be able to tell his story. He wants to inform and educate as many people as he can.

“I know I’m still here for a reason,” Jones said. “My message extends to everyone, transcending race and gender, but I want to open the eyes of young men, especially young African American men. You can take all the right steps, and it can still happen to you.”

Symptoms of multiple myeloma to look out for

As Dr. Zonder explained, there is no routine screening test for multiple myeloma.

“We don’t do regular blood tests to screen for myeloma the way we do colonoscopies to look for colon cancer or mammograms to look for breast cancer,” he described.

It is best to see a doctor regularly, get routine lab work done and address any concerns with your primary care provider as they happen. Signs and symptoms you should not ignore are:

• Bone pain, especially in the back or ribs.
• Bones that break easily.
• Frequent infections.
• Easy bruising or bleeding.
• Trouble breathing.
• Weakness of the arms or legs.

There may not always be symptoms when it comes to multiple myeloma. When there are no symptoms present, it is called smoldering myeloma. In this case, the disease is discovered through lab tests which may have been ordered for other health reasons.

“The best thing to do is to pay attention to your body. The symptoms of multiple myeloma may seem explainable in an otherwise healthy individual. However, do not ignore the signs if the condition lasts longer than usual. Be detailed with your doctor about your symptoms so they can order the appropriate tests,” Dr. Zonder concluded.

If you or a loved one has been diagnosed with multiple myeloma, consulting with a specialist who has dedicated their career to researching and treating this disease is important. Call 1-800-KARMANOS to make an appointment with one of our world-renowned multiple myeloma experts.