Alfred Johnson: Enjoying Family Life Thanks to Treatment for Multiple Myeloma

Eight years after Alfred Johnson’s initial diagnosis, his smoldering myeloma progressed to multiple myeloma. Since that time, regular treatment with lenalidomide has controlled his cancer and enabled him to enjoy life.

I was diagnosed with smoldering myeloma, which is a medical condition that is often a precursor to multiple myeloma, in 2009. For me, it was 8 years before the smoldering myeloma progressed to multiple myeloma. The main treatment I’ve received since then is a drug called lenalidomide (Revlimid). It is controlling the cancer, and I’m enjoying life with my family, my wife, sons, and grandchildren.

Ever since I was a young man, I had always made sure to get an annual checkup with my primary care doctor. For a number of years in the early 2000s, he and I would talk each year about back pain that I was experiencing, which would come and go. Finally, at my annual checkup in 2009, the doctor ordered a 24-hour urine test because he wanted to check whether the pain might be related to any problem with my kidneys.

The test showed that I had elevated levels of something called Bence Jones protein in my urine, and the doctor referred me to a hematologist. I knew that the referral meant that something was wrong with my blood and that scared me.

The hematologist did a bone marrow biopsy in which they found some cancer cells, which was even more scary.

At that point, I transferred my care to the Dana-Farber Cancer Institute. I knew it was a great place to be treated because my wife had been successfully treated there for ovarian cancer.

After my first visit to Dr. Munshi at Dana-Farber, I felt much better about my prospects. He told me that I had smoldering myeloma and that although it often progresses to become a form of cancer called multiple myeloma, I would not need any treatment until I developed other symptoms of the disease. He also told me that there were a number treatments available for multiple myeloma that could control the disease if it arose.

Over the next eight years, the only thing that I needed to do was have regular blood tests to check to see that the smoldering myeloma was not progressing. Then, in August 2017, the blood test showed that the smoldering myeloma might be progressing. A bone marrow biopsy confirmed that I did indeed now have multiple myeloma and that I needed to begin active treatment.

I started treatment with bortezomib (Velcade) injections and a steroid called dexamethasone. A few weeks later, lenalidomide (Revlimid) was added to my treatment. After this treatment controlled the multiple myeloma, the bortezomib and steroid were discontinued. I have been treated with only lenalidomide ever since and the blood tests I have every three months show that the multiple myeloma remains under control.

I take lenalidomide daily for three weeks and then have a week off treatment. There are some side effects, but I have found that taking the medication in the evening limits some of these for me because I then go to sleep. I am not able to work as long in the yard as I use to be able, but I still enjoy life.

I am grateful to Dr. Munshi and his team for the great care I have received, and I have learned from them how important research has been to changing multiple myeloma from a very deadly disease to one that can be controlled by medication.