Living with Blood Cancer
- A 58-year-old woman from Edinburg, Scotland is suffering a relapse from her incurable blood cancer. The mom-of-three was diagnosed with multiple myeloma in 2014 after presenting with symptoms such as swollen legs and a urinary tract infection.
- The Scot’s treatment journey finally brought her into remission for several years, but in 2021, the disease came back. Unfortunately, it was expected due to the nature of the disease, which is managed through maintenance therapy.
- 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.
The Scot’s treatment journey finally brought her into remission for several years, but in 2021, the disease came back. Unfortunately, it was expected.
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Jackie went on to explain how difficult the diagnosis process of myeloma can be. “You don't have a lump or something concrete,” she said.
“The bundle of symptoms is nebulous … it was all a total surprise. It's incurable and it will always keep coming back. They liken it to a dripping tap and you just hope the tap will stay nice and tight for 10 years, 15 years."
Jackiewho says that doctors need to “keep asking questions and push for solutions” due to the nature of this tricky conditionis continuing to raise awareness of the disease in honor of Myeloma UK‘s 25th anniversary this month.
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
Dr. Matthew Ulrickson of Banner MD Anderson Cancer Center in Gilbert, Arizona, sat down with SurvivorNet to break down the way that multiple myeloma changes over time. Multiple myeloma can be detected in multiple phases of the disease:
- Monoclonal gammopathy of uncertain significance (MGUS)
- Smoldering (or asymptomatic) multiple myeloma
- Multiple myeloma
What Is MGUS?
Multiple myeloma starts with a single plasma cell making more copies of itself than it should. This abnormal reproduction can be detected in the bloodstream because of proteins that are secreted through the process.
Related: How are MGUS and Smoldering Multiple Myeloma Monitored?
"If it is simply making this protein, but no other symptoms are present, it's referred to as an MGUS," Dr. Ulrickson said. This acronym stands for monoclonal gammopathy of uncertain significance.
In this phase of the disease, patients do not need treatment, but Dr. Ulrickson recommends connecting with a hematologist who can monitor the disease and adjust treatment if it progresses. A bone marrow biopsy may be warranted to look inside the bone marrow to see the level of abnormal plasma cells. If you have less than 10% of abnormal plasma cells detected you fall into the MGUS category.
Most people with this condition do not develop multiple myelomathe risk is about 1% per year. For most people living with MGUS, the condition requires regular check ups to make sure that it does not advance.
What Is Smoldering Multiple Myeloma?
People who are diagnosed with smoldering multiple myeloma have more plasma cells in their bone marrow than people diagnosed with MGUS, but they still have not experienced symptoms of myeloma. Smoldering myeloma occurs when a patient has greater than or equal to 10% abnormal plasma cells via bone marrow biopsy.
Related: Managing the Symptoms of Multiple Myeloma
There is a higher risk of patients with smoldering multiple myeloma developing multiple myeloma, so this condition requires close monitoring. For the first 5 years following a smoldering multiple myeloma diagnosis, patients have a 10% risk of the condition progressing. For the next five years the risk is 3%, and the risk is 1% a year from then on.
Multiple Myeloma How Are Patients Monitored after Treatment?
According to Dr. Ulrickson, there is not one solid answer to the question of whether or not people with smoldering multiple myeloma should be treated. "Some ongoing research is looking at whether or not patients with smoldering multiple myeloma need to be treated," he explained. "That's something you should talk about with your physician."
Related: Multiple Myeloma Dealing With the Initial Diagnosis
The standard approach to smoldering multiple myeloma used to be to monitor the condition and wait until there were symptoms of multiple myeloma before treating it. More recent research, however, suggests that there may be benefits to earlier treatment. This is particularly true for people with genetic traits that indicate a greater risk of development to full multiple myeloma.
What Is Multiple Myeloma?
When the cancer begins to damage the body, a patient will be diagnosed with multiple myeloma. People with multiple myeloma have more cancerous cells than people with MGUS and smoldering myeloma. "We usually refer to the CRAB criteria when diagnosing multiple myeloma," Dr. Ulrickson said.
- C for high calcium
- R for renal failure (kidney failure)
- A for anemia (a low red blood cell count)
- B for bone lesions, which can cause pain and lead to fractures
Any of these symptoms can lead to a multiple myeloma diagnosis. A person's health and the classification of their multiple myeloma will inform the treatment path that doctors recommend.
Contributing by SurvivorNet staff.
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