Karen, who is from the Newcastle, England, area, was diagnosed with multiple myeloma in January 2020, but she's sharing her story now to raise awareness for this incurable cancer.

"I want people to know about myeloma and spot the signs," she said. "If anything doesn't feel right, please get it checked."

"We need more funding and awareness because it feels like myeloma is a forgotten cancer," she added.

Karen's Cancer Diagnosis

Karen, a mother of two children, fell while at work in late 2019. The fall left her struggling to walk and she even had to sleep sitting up in a chair because the pain was so bad.

"I had uncontrollable spasms and couldn't lie down in bed. I was sleeping propped up in a chair as best I could manage to try to grasp a few hours of sleep," she said.

Multiple Myeloma Symptoms

"I felt I was getting worse with the pain and didn't seem to be standing as upright as normal," she added. "I was (going) back and forth to the (general practitioner and) over-the-counter painkillers weren't making any difference."

If the agonizing back pain wasn't enough for her, Karen also shrunk by 5 whole inches. She was 5-feet 5-inches most of her life, but now she's simply 5-feet, "but no one noticed."

"I just knew that something wasn't right and it was getting worse," she said. "The pain would come on randomly and take my breath away. It was like someone tightening a rope around my ribs and sticking pins in me at the same time."

Her symptoms were repeatedly dismissed, even when the painkillers and physical therapy didn't work, so Karen sought medical attention with a private spinal consultant, who ordered both a CT and MRI scan. She was diagnosed with multiple myeloma shortly after.

And by the time she found out the cause of her pain, she learned that she had two broken vertebrae and a compressed disc. She was forced to use a walker and wear a back brace for four months.

In March 2021, Karen went through chemotherapy and a stem cell transplant in order to put her multiple myeloma into remission. However, at the end of 2021, she felt a sharp pain and heard a "loud crack" in her jaw. It turned out that her jaw was fractured while she was eating lunch.

But this also meant that her cancer had returned.

She began another five rounds of chemotherapy in January, and hopefully, her multiple myeloma will go into remission again.

Understanding Multiple Myeloma

Multiple myeloma is a rare type of blood cancer. When a person has this cancer, white blood cells called plasma cells (the cells that make antibodies to fight infections) in your bone marrow grow out of proportion to healthy cells. Those abnormal cells leave less room for the healthy blood cells your body needs to fight infections. They can also spread to other parts of your body and cause problems with organs, like the kidneys.

The Multiple Phases of Multiple Myeloma

Myeloma is an incurable cancer, which means you will always have this cancer. However, with treatment, it can go into remission and remain undetected for years. But sometimes, the cancer can return or relapse after treatment. If this happens, your doctor can put you on one of the treatments you have already tried again, try a new treatment or recommend that you enroll in a clinical trial.

SurvivorNet medical experts say that oftentimes, people are diagnosed with this cancer after going to their doctor seeking an answer for persistent tiredness or other unusual symptoms, like in Karen's case; she was complaining of back pain.

Certain factors increase a person's likelihood of getting multiple myeloma. These risk factors include things such as age (older people tend to get myeloma), family history, gender (men are at a higher risk for this cancer), race (Black people tend to have higher rates of this disease) and a condition called MGUS (monoclonal gammopathy of undetermined significance).

MGUS is a condition named simply for the fact that a person has too much of an abnormal protein, called the monoclonal protein, in their bone marrow and blood. MGUS is rare, and the risk that it will turn into multiple myeloma is just 1% each year.

Making Myeloma Treatment Choices: SurvivorNet's Carefully Constructed Resources

The next step to developing multiple myeloma is called smoldering myeloma, a disease that often comes before development of full-blown myeloma. In other words, it’s very close to becoming active myeloma, but doesn’t have any symptoms. It’s characterized by higher levels of abnormal proteins in the blood and plasma cells that make up greater than 10% of the bone marrow. The goal with smoldering myeloma is to keep the disease from becoming active.

The odds that either condition will become cancer are very small, but to be safe, your doctor will probably check you more closely with blood and urine tests, and sometimes a bone marrow biopsy removing and testing a small sample of the spongy material inside your bones.

Advocating for Yourself

Karen knew something was wrong with her body, even when her doctor repeatedly dismissed her concerns. It’s important to stand up for yourself if you feel that you're being dismissed or mistreated by a doctor. Getting a second opinion, like Karen did, is crucial if something doesn't feel right.

Be Pushy, Be Your Own Advocate… Don't Settle

Dr. Zuri Murrell, a colorectal surgeon at Cedars-Sinai Medical Center, previously told SurvivorNet that sometimes, patients need to be pushy.

"From a doctor's perspective, every problem should have a diagnosis, a treatment, a plan for follow-up, and a plan for what happens next if the treatment doesn't work," Dr. Murrell said.

And as a patient, "if you don't feel like each of these four things has been accomplished, just ask! Even if it requires multiple visits or seeing additional providers for a second opinion, always be your own advocate."

Contributing: SurvivorNet staff reports

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