MGUS: What It's Like to Live With a Time Bomb
My Diagnosis Came From a Routine Blood Test
I have MGUS—monoclonal gammopathy of unknown significance. Never heard of it? Neither had I until it was discovered on a routine blood test. When I got the lab reports from my doctor’s office to forward to Social Security for an entirely different condition, the numbers were highlighted in yellow, and there was a note at the bottom of the page that read, “Refer to oncologist/hematologist.”
Of course, I was alarmed. I called the doctor and the staff refused to tell me anything, I couldn’t get in to see the physician for over a week. I did what most people do—I got online and researched, learning everything I could about MGUS.
I found out that white blood cells called plasma cells make proteins called immunoglobulins that function as antibodies. They fight invading bacteria and viruses. When one of these proteins gets “out of whack” and starts cloning itself, it’s called monoclonal gammopathy. Raised levels of these proteins are seen in patients with multiple myeloma and lymphoma. The particular protein they found in my blood is related to multiple myeloma.
In July of 2000, my aunt was diagnosed with multiple myeloma. We had always been extremely close; in fact, she was like my second mother. She lived just down the street from us, and when I was a kid, I stayed with her while my mom worked.
My Aunt Tinkie went to Atlanta to receive her cancer treatment. Her daughter lived there and was a health care professional, so my aunt was able to see the best myeloma doctors right away. Even so, she lasted less than a year. With this in mind, you can probably understand why I was pretty much “freaking out.”
Finally, I Saw the Doctor
I was able to see the oncologist-hematologist about ten days after I learned about my MGUS. He was very patient and informative. He said that 1% of the population over the age of 50 has the condition. At the time, I was 49. I also learned that my MGUS might never develop into multiple myeloma. I have about a 2% chance a year of the MGUS progressing into cancer. So if I live until I’m 76, I’ll have a 50-50 chance—I’m 51 now. I guess the frustrating part is that nothing can be done about the MGUS until or unless it develops into multiple myeloma. They’re just “watching it.”
Blood Tests Every Six Months
I try hard not to even think about the MGUS, and I do a pretty good job of that except for when it’s time for the tests. Then I’m a basket case. My blood pressure is usually about 130 over 70, but when I go in to see the oncologist for my test results, it always shoots up. It has been as high as 180/110. I told the nurse I didn’t have to worry about multiple myeloma—I’d die from a stroke first. Amazingly, as soon as I’ve received good reports, my numbers return to normal. Just goes to show you how detrimental stress can be!
I have to have blood tests every six months, and a 24-hour urine test once a year. Sometimes I feel as if I have a ticking time bomb inside that’s just waiting to explode.
I just returned home from my six-month blood study, and the MGUS level was up. If it continues to rise, my doctor will perform a bone marrow biopsy. I’ve already had my cry, and now I feel somewhat better. All I can do is pray. I’m not going to let this dominate my life.
Some experts say that MGUS can be caused by lupus, inflammation, or even from severe arthritis. Other experts disagree, however. I choose to believe the first group. I have severe arthritis, so maybe that’s why I have the MGUS. Either way, there’s nothing I can do about it, so worrying will only make me feel worse.
Words of Advice
If you’ve been diagnosed with MGUS, try not to let it rule your life. I realize that’s easier to say than do. Even if the worst happens, and your MGUS develops into multiple myeloma, MM isn’t the quick death sentence it was just a few years ago. With new treatments and technologies, multiple myeloma victims are living longer and better quality lives. My doctor has several MM patients who have been diagnosed for six years, and my daughter, a nurse, sees a patient who’s had myeloma for ten years.
If you have MGUS, I know the range of emotions you’re going through or have gone through. You’re not alone. I suggest visiting these two very helpful websites:
You’ll find all kinds of information there about the latest treatment for the disease, along with a support group and other invaluable resources.
On my last visit to the hematologist/oncologist, my MGUS numbers had shot up. My physician was going to schedule a bone marrow biopsy but decided to do some more intense blood tests before ordering the procedure. Since those blood tests were good, I didn't have to have the bone marrow biopsy.
I did, however, have to have a complete skeletal survey. This was just a series of X-rays to look at my bones for any lesions or "holes." Fortunately, none were found. Since my MGUS numbers have been rising, I now have to see my specialist every three months instead of every six months. I really hate having MGUS.
The Very Latest
I had a bone marrow biopsy/marrow aspiration in April, 2011. They found 5-10% plasma cells. My oncologist said the number would have to be 10% for a diagnosis of MM. I was pretty upset, but he said my plasma cell numbers might never increase. Keep the prayers and good thoughts coming! I sincerely appreciate all of your comments!
This content is accurate and true to the best of the author’s knowledge and does not substitute for diagnosis, prognosis, treatment, prescription, and/or dietary advice from a licensed health professional. Drugs, supplements, and natural remedies may have dangerous side effects. If pregnant or nursing, consult with a qualified provider on an individual basis. Seek immediate help if you are experiencing a medical emergency.
Questions & Answers
I have been diagnosed with MGUS and found lytic lesions on the spine, shoulder, and near the elbow. After a pet scan then, it was negative for Multiple myelomas. Should I be concerned?
I had a pet scan a couple of years ago for a spot on my lung. I was told that a pet scan didn't show MM. How is your blood work? Talk to your oncologist about your scan results. Perhaps something else caused the lesions.Helpful 5