How A 56-Year-Old Woman’s ‘Searing’ Back Pain Lead to Multiple Myeloma Diagnosis, And A Recovery That Will Inspire You

With the help of a team of healthcare providers and Karen's hard work and determination, she gained the ability to walk again but the cancer was raging. She was put on chemotherapy with the understanding that eventually she would need a bone marrow transplant. "It was as awful as I feared," she remembers. "I felt sick as a dog and was kept in complete isolation" during chemo.

But several years later, she felt well enough to move with her husband to Columbia, South Carolina, where researchers at the Medical University of South Carolina (MUSC) were working on a new blood cancer protocol. She became the patient of Dr. Hamza Hashmi, a hematologist-oncologist at the Medical University of South Carolina. "The first thing he did was take me off all those uncomfortable chemotherapy medications my previous doctors told me I would need for the rest of my life," Karen recalls. "Then he gave me even better news. 'I think your cancer is gone,' he said. 'And we're going to prove it!'"

Dr. Hashmi told Karen about a test called MRD (Minimal Residual Disease), a measure used for blood cancers, which includes myeloma -as well as lymphoma, leukemia and other blood cancers. An MRD test looks for any cancer cells that were not killed by chemotherapy or other cancer treatments. In other words, the test helps determine if a patient is in full remission, or if they're at risk of relapse and need further cancer treatments.

"To take the test, I needed to have a bone biopsy. Based on past experience, it frightened me, so I put it off for a while," Karen says. "Finally, I got up my nerve. Much to my happy surprise, the outpatient procedure turned out to be a breeze."

But there was even better news. "A week later, Dr. Hashmi called me and said, 'Are you sitting down?' I thought he was going to tell me the cancer came back. But no. He said, 'Just as we suspected, out of 3 ½ million cells tested in your body, there is zero cancer.'"

"I describe it is as a functional cure," explains Dr. Hashmi. "Which means you can give someone a finite duration of therapy. Cancer goes into remission and the patient comes off treatments. If the cancer does not recur — that's a cure. It's sometimes difficult to achieve with all blood cancers, especially with myeloma."

Dr. Jeffrey Zonder, a medical oncologist, leader of the Multiple Myeloma and Amyloidosis Multidisciplinary Team (MDT) and member of the Hematology Oncology MDT at the Barbara Ann Karmanos Cancer Institute, points out: "Right now there's a lot of debate in the myeloma research community about how we should use the MRD testing, or even if we should use the testing. That said, it's emerging as something that's done more and more frequently."

What Is Multiple Myeloma?

Multiple myeloma is a blood cancer involving plasma cells, a special kind of mature white blood cells that reside in the bone marrow and help fight infection. In response to infections, these plasma cells normally produce proteins that help your immune system fight off germs.

In multiple myeloma, cancerous plasma cells grow uncontrollably in the bone marrow and crowd out other functioning white blood cells. As a result, the immune system can't properly fight off infection, causing fatigue. Once the cancerous cells, or myelomas, grow too large in the bone marrow, bone fractures can occur. The cancerous cells also release abnormally high levels of antibodies into the bloodstream, which eventually end up in the kidney for processing. Since the kidneys are unable to process these extra proteins, they build up and cause kidney damage.

Multiple myeloma can be divided up into categories that help inform physicians which treatments and approaches are best to use. "We tend to [divide them] based on how risky the myeloma is, whereas other cancers will be staged based on how far the cancer has spread," Dr. Nina Shah, a hematologist at UCSF Medical Center explains.

There are three stages of myeloma:

• High risk multiple myeloma exists when a patient's cells contain missing segments of DNA or switched segments.
• Intermediate risk multiple myeloma is when some of these DNA changes are not present but a patient has elevated levels of certain proteins in the blood.
• Low risk multiple myeloma exists when a patient has none of these changes.

Dr. Nina Shah, a hematologist who specializes in the treatment of multiple myeloma, a type of cancer affecting the blood marrow, explains a multiple myeloma diagnosis. 

Multiple Myeloma originates from blood cancer, which is a type of cancer that affects blood cells. It's caused by mutations (changes) in the DNA within blood cells which causes them to start behaving abnormally. Blood cancers account for about 10 percent of all diagnosed cancers in the U.S. each year, according to Yale Medicine.

There are three primary types of blood cancer:

• Leukemia is the most common blood cancer for children who are under the age of fifteen, according to the Leukemia & Lymphoma Society. It's a cancer of white blood cells or cells that become white blood cells. Leukemia prevents white blood cells from fighting infections in the body. The condition can be either acute (which means it's fast-growing) or chronic (slow-growing).
• Hodgkin Lymphoma and Non-Hodgkin Lymphoma. The primary difference between Hodgkin and non-Hodgkin lymphoma is the type of lymphocyte (a type of immune cell that is made in the bone marrow and found in the blood and lymph tissue) that is affected. Lymphoma is cancer of the lymphatic system and is the most common kind of blood cancer in adults (more than half of all diagnosed blood cancers). It affects the lymph nodes whose job it is to filter out harmful substances.
• Multiple myeloma is a cancer of the plasma cells, which are lymphocytes that make antibodies to protect against infections. Myeloma affects the body's immune system leaving it susceptible to infection.

Who Is At Risk for Multiple Myeloma?

The risk factors for multiple myeloma can vary widely based on several factors, such as:

• Race and ethnicity. African Americans are at an increased risk of developing multiple myeloma because they have higher rates of conditions that can lead to myeloma.
• Age and gender with males at a slightly greater risk than females
• The presence of precursor diseases. Full-blown multiple myeloma is usually preceded by two conditionsMGUS (monoclonal gammopathy of undetermined significance) and smoldering myeloma.

MGUS is a precancerous condition in which an abnormal protein turns up in the blood. The protein, produced by a type of white blood cell in the bone marrow called plasma cells, usually causes no health problems, and people are typically unaware they have MGUS until it is diagnosed in a routine blood test.

In MGUS, plasma cells make up less than 10% of the bone marrow. That's not enough to cause cancer. Healthy people can have close to that amount. This explains why the disease is symptomless and carries only a 1% yearly risk of developing active myeloma. However, not all individuals have the same risk of developing MGUS. The risk varies by:

• RaceAfrican Americans are three times as likely to develop MGUS than Caucasians. The disease also typically appears at an earlier age
• Family historyfirst-degree relatives of individuals with MGUS or overt active myeloma are at an increased risk of developing the same disease.
• AgeLike many cancers and their associated conditions, risk of developing MGUS also increases with ag

The other precursor disease is smoldering multiple myeloma, which is a disease that is very close to becoming active myeloma, but does not have any symptoms.

The chance that smoldering multiple myeloma progresses to malignant myeloma differs based on the riskiness of the smoldering diagnosis.

Patients with smoldering myeloma typically have a 10% lifetime chance of progressing to active multiple myeloma, but patients with high risk smoldering myeloma have a 50% chance of progressing to active multiple myeloma within just two years following diagnosis, according to Dr. Irene Ghobrial, myeloma specialist from the Dana -Farber Cancer Institute.

Dr. Irene Ghobrial, myeloma specialist from the Dana -Farber Cancer Institute, explains a smoldering multiple myeloma diagnosis.

What Are The Symptoms of Blood Cancer?

"It's very common for someone to say, 'You know, I've been feeling very tired," or 'You know, I notice I had a few more infections last winter than I remember,’" Dr. Shah says in a previous interview with SurvivorNet. "But at the first sign of something abnormal, it's important to then take that to the next step and say, 'OK, what am I missing? Is there something else maybe that could be causing this?' And that's often when we see a diagnosis of multiple myeloma."

Other symptoms include bone problems, like pain or weakness in the back, hips, or skull. After a diagnosis, Dr. Shah says the first step would be to have your blood checked for a level of protein as well as the blood count.

There are several other tests doctors will likely perform, including a DNA test. "The DNA is so important because it helps to put people in categories of risk. Once we know that, we're able to understand how severe the disease is and what we can do to treat it," Dr. Shah says.

What Are The Treatments?

"Humankind has come a long way when it comes to cancer diagnosis and treatment," says Dr. Hashmi. "Multiple myeloma no longer needs to be a death sentence. It's become more of a chronic condition where you grow old with it."

With regards to multiple myeloma treatment, experts who’ve been driving the field for the past 20 years all believe that the treatments they now give to patients are drastically better than when they first began their careers. The medicine and research are extremely promising for people who are recently or newly diagnosed with multiple myeloma.

Dr. Paul Richardson, Director of Clinical Research at the Dana-Farber Cancer Institute, told SurvivorNet in a previous interview, newer drugs, including combination therapies, more-refined stem cell transplants, and the recent emergence of immunotherapies, have led to a kind of "paradigm change" in how we view and ultimately treat multiple myeloma.

"We've seen dramatic changes continue and I think that's what's been so exciting and been such a privilege to be part of the field because these changes have led to further advances,” said Anderson.

With current advancements, average length of life with multiple myeloma has become four times what it was just two decades ago. There has been so much innovation already that individuals who would only live for a few years after treatment are now living for a decade or more, and things will only get better from here.

Related: An Exciting Development in Delivery of Daratumumab for Multiple Myeloma

Dr. Shah explains what goes into making treatment decisions for multiple myeloma. 

What’s MRD Testing?

MRD (Minimal Residual Disease) testing monitors blood cancer activity. It lets doctors know how many cancer cells remain during or after treatments. And, it gives health care providers a way to track and discuss how best to manage care.

"MRD testing helps not only the patient," says Dr. Hashmi, "but it helps the physician who uses the test to understand more about their patient's myeloma and make decisions based on the test results."

MRD testing is part of what is known as "precision medicine". It is sometimes called "personalized medicine." This diagnostic tool gives doctors insight into the genes and proteins in cancer cells. The information allows them to create a treatment plan that best targets a person's specific cancer.

An MRD assessment is so sensitive that it can find one cancer cell among 10,000 to 100,000 nucleated cells, according to the Leukemia & Lymphoma Society. If the results are MRD-negative it means that there are no traces of detectable cancer left. MRD-positive means that some+ cancer cells are still present.

There may be discomfort from having a blood or bone marrow sample drawn for the test. It's a good idea to ask your doctor what to expect and whether pain medication is available.

If You’ve Been Diagnosed With Multiple Myeloma, What Should I Ask The Doctor?

• What are the recommended treatments for multiple myeloma?
• What kinds of health professionals will be on my medical team?
• What are some of the side effects I should expect from the disease or the treatments?
• Will my disease, or the treatments, interfere with my lifestyle? Will I be able to continue to work?
• Should I get a second opinion?
• How expensive are the treatments and are there financial resources to help?
• Dr. Hashmi also suggests patients ask whether there are any clinical trials available and if the patient qualifies.

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