Multiple Myeloma 101: An Incurable But ‘Very Treatable’ Disease

While a diagnosis of multiple myeloma can be overwhelming the disease is very treatable.

While not as common as lung cancer or colon cancer, it is the second most common blood-related cancer, with 0.8% of the population having a lifetime risk of developing multiple myeloma. To put that into perspective, the average lifetime risk of developing breast cancer is around 12%, with lung cancer at 6%.

As with most malignancies, multiple myeloma is a disease that affects the older patient population, with the median age at diagnosis of 69 years old. And while its cause is unknown, chronic inflammation from infection and environmental exposures may play a role, and as such, there is no defined role for screening for multiple myeloma as there is for other malignancies. It's not like colon cancer, (for which) you have colonoscopies, or for breast cancer, there's mammography.

There is also a small hereditary component to the disease, though it is not often cause for concern. While there is no specific genetic test to screen for, the risk to family members is about twice that of baseline, but still relatively low.

When it comes to the signs of the disease, most patients who had been diagnosed and summed up the symptoms they presented with. Bone pain was present in 59% of patients, and fatigue was present in 32%. Twenty four percent of patients experienced weight loss, with 50% losing roughly 20 pounds or more. About 73% of patients presented with anemia, and almost 80% of patients had some abnormal skeletal findings on an X-ray, such as bone lesions (66%) or osteoporosis (23%).

What can be challenging in multiple myeloma is that the symptoms are very common for people in general, A lot of times, patients can have these symptoms for months before the diagnosis, which is very common.

While identifying myeloma can seem challenging, doctors will often rely on more sensitive imaging tests such as CT scans or MRI or PET scans.

Unlike cancers that involve solid tumors, multiple myeloma is staged in a completely different way, and focuses on lab tests and blood work.

While myeloma is not considered curable, it is very treatable, with the main goals of treatment being to improve the patient’s quality of life by improving symptom burden, and ultimately extending a patient’s life.

Myeloma treatment can be divided into several phases. At first, when a patient has a myeloma-defining event, such as a bone lesion or kidney dysfunction, initial therapy for the first several months to a year involves a fair number of visits for treatment – often weekly – to improve the disease burden and to get any symptoms under better control. This is also a point when other therapies such as autologous stem cell transplant, which involves high dose chemotherapy, could be brought up.

Once the initial course of therapy has been completed, the majority of patients have a great response and often feel better enough to move onto what is called maintenance therapy, where the amount of therapy is streamlined down to one or two drugs to maintain that response for as long as possible.

However, over time, some patients can relapse, and the disease will return. This is what has happened in my case.
At that point, more treatment is discussed. This is also the point where it could be worth considering participating in a clinical trial. I have never participated in a clinical trial but I definitely keep the options open. 

Ultimately, while a new diagnosis of multiple myeloma can be terrifying, it is a “very treatable” disease, and the majority of patients do very well with treatment.

For many people this is like the front burner (issue) for them, but for me the goal is to do my treatments, stay strong mentally and physically and keep this on the back burner so that I can do what I enjoy to do and move on with my life and have as full a life as possible. 
I do not allow this disease to control or alter my life. Most days I do not even think about it or remember that I’m living with it. I do not give it that much power and that works really well for me and my survival. 

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