Brenda Driver, a 59-year old former nurse from California, was diagnosed with monoclonal gammopathy of undetermined significance (MGUS) in August last year.

She took the diagnosis as a blessing in disguise. “I’m grateful that I didn’t present with myeloma right away. Having MGUS gives me a chance to learn about myeloma,” she said.

MGUS is a plasma cell disorder, characterized by the presence of increased levels of monoclonal (M) protein in the blood. Unlike myeloma patients, however, those with MGUS do not experience any disease-related symptoms. MGUS patients currently follow a “watch and wait” approach and typically do not receive treatment unless they progress to multiple myeloma.

Driver, who also has the auto-immune disease lupus and inflammatory joint disease, was diagnosed with MGUS after a routine checkup with her rheumatologist.

“I don’t think he was really looking for MGUS,” she said. “But with all the things that are going on with me, I suppose it wasn’t necessarily a big surprise that I would have something else going on with my immune system. And I kind of took it that way,” she recounted.

However, she pointed out that “I was a little anxious when I made the connection between MGUS and myeloma. But then, learning that only 1 percent to 2 percent of people actually progress to myeloma, and in talking to my doctors, I kind of relaxed about it,” said Driver.

After her diagnosis, Driver’s doctors left the choice of getting a bone marrow biopsy or aspiration to her. Both procedures help detect and quantify the presence of abnormal plasma cells in the bone marrow. Driver has chosen not to undergo either procedure so far.

“I just have a lot of things going on as a result of some of my other health issues. I am in a wheelchair, and sometimes it is difficult for me to handle some types of exams. So I discussed it with my oncologist and primary care physician, and they were okay with me waiting,” she explained.

According to Driver, perhaps the most overwhelming factor of her diagnosis was trying to explain MGUS to her family. “I worked in the medical field, so I am kind of familiar with how things can go. But I think it was overwhelming for [my family] because their idea was that they wanted something done about it right away. They couldn’t wrap their heads around the ‘watch and wait’ deal,” she said.

Initially, her doctor recommended doing blood tests at three and six months after the diagnosis as part of the ‘watch and wait’ approach. They would then be spread out further to every six months and to a year after that. However, Driver had reservations about that approach. “I don’t know that I was comfortable with the one-year period between checking my labs,” explained Driver.

However, since Driver’s M-protein level was not stable at the three- and six-month checks, the doctors decided to continue testing it every six months. “I’m comfortable with every six months because that is what I was going to request anyway,” she said.

When asked about the problems she is experiencing with MGUS, Driver said, “I think I have more problems with my lupus than I do with the MGUS.” Systemic lupus erythematosus, commonly called lupus, is a disorder in which the immune system attacks the body’s own healthy tissues including the skin, joints, lungs, and kidneys.

About 15 years ago, Driver also developed inflammatory joint disease, which causes pain, stiffness, and swelling of joints. “The joint disease was more intense than MGUS because of how it came on,” said Driver. “I woke up one morning, and I had a huge bruise on my hip. When I was about to stand up, my legs wouldn’t hold my weight.”

Driver’s doctors found that the lining of her hip joint had ruptured and leaked fluid, and she was subsequently diagnosed with inflammatory joint disease.

Driver reflected that being diagnosed with MGUS has made her more mindful of her body. “One thing that I do differently [after being diagnosed with MGUS] is that I don’t ignore things. I try to pay attention to how I’m feeling and see if I have anything that seems like it might be a symptom of active myeloma,” said Driver. “Having MGUS has also made me mindful that I need to go ahead and do some things right away and not put them off. Because we just never know how much time we have. I don’t think I thought in those terms before.”

Though Driver has not been married herself, she has several siblings, nieces, nephews, grand nieces and grand nephews, and a three-year old great grand niece. Driver says she tries to spend more time with her family members after her MGUS diagnosis.

“Having MGUS switched my thinking about how I live my life day to day. So I tend to go to the movies more often, or do something with my nieces and nephews more often,” she said. “I let people know how I feel about them and make sure that I say the things I want to say. Because sometimes with our loved ones, we don’t tell them that we love them as often as we probably should.”

Driver said her most important advice to people newly diagnosed with MGUS would be to learn as much as they can about the disease.

She also stressed the importance of finding an oncologist who is easy to communicate with. “Make sure that you have a doctor that you can talk to and who pays attention to what you are saying,” she said.

“Also, pay attention to your body. For me, that’s a big one. You don’t just say, oh well, this hurts, but it’s probably just a sprain or it’s probably just that I bumped my knee the other day. It very well could be, but when you have MGUS there is also a possibility that it isn’t.”