Patient moved to Indy for treatment of multiple myeloma

By the time she got her diagnosis and became a patient of IU Health, Irene Johnson was so relieved and encouraged by her care that she and her husband took up residency in Indianapolis.

By IU Health Senior Journalist, T.J. Banes, tfender1@iuhealth.org

For 32 years, Irene Johnson worked at health care centers as a certified surgical tech and also in sterile processing. Part of her career was spent traveling the country – and even outside the United States. She worked five and sometimes seven days at a job she loved.

Her work took to her to California, Las Vegas, and even to the Persian Gulf coast to the city of Dubai. She was in Tennessee when she experienced intense back pain and swelling in her feet and breastplate. At first she thought she thought the pain was from heavy lifting on her job. She went to a local doctor who prescribed muscle relaxers and went about her job.

But then on May 2, 2019 the pain intensified. She ran a fever, couldn’t eat and was sleeping 15-16 hours a day. She lost 15 pounds and could barely walk.

A graduate of Indianapolis’ Emmerich Manual High School, Johnson attended Indiana University planning a career in nursing. She met her husband, Michael, in her second year of college, got married and had their first child, a son, Calvin, who is now 35. They later had a daughter Brittany, 31. They also have two grandchildren. Both their children and grandchildren live in Kansas City.

Irene and Michael Johnson were also living in Kansas City when her symptoms grew worse. It was Michael who insisted his wife go to the emergency room.

“I blacked out and when I woke up I was in the intensive care unit. They said my kidneys were failing but they didn’t know why,” said Johnson, 56. Blood work and a biopsy followed and Johnson was diagnosed with multiple myeloma, a cancer that forms in the white blood cells called “plasma cells.”

March is Multiple Myeloma Awareness Month and also Multiple Myeloma Action Month – an effort spearheaded by the International Myeloma Foundation.

According to information from the International Myeloma Foundation, multiple myeloma only accounts for two percent of all cancers but is the most common blood cancer in African Americans. It’s estimated African Americans account for 20 percent of the patients with myeloma. That number could increase to 24 percent of newly diagnosed patients in the next decade.

The International Myeloma Foundation points to several factors that may attribute to the lack of improvement in survival rates among African Americans including autologous stem cell transplant, access to novel therapies, and enrollment in clinical trials.

Researchers at IU School of Medicine are studying ways to treat and prevent the disease, and the Indiana Myeloma Registry is seeking participants to help better understand the disease. IU Health Dr. Rafat Abonour, is one of the researchers helping with this study and has been researching multiple myeloma for over two decades.

“I had no idea what myeloma was,” said Johnson. She and her husband were in Indianapolis visiting their parents when she was hospitalized for nearly a month, starting dialysis and stabilizing her symptoms. In the care of IU Health Dr. Mohammad Abu Zaid, who specializes in hematology, she learned about stem cell transplant.

“I talked it over with my husband and children and decided that was what I needed to do,” said Johnson. She received her stem cell transplant on Dec. 4, 2019.

“I was very weak for three or four months. My husband had to step in and care for me but then I started feeling better. I was determined to do things for myself,” said Johnson. “I watched my husband and children cry but I never dropped a tear until my hair fell out and I couldn’t do things for myself.”

She continues to get monthly blood work to monitor any side effects of her medication. Each visit, she waits to hear the word: “Remission.” When she started her treatment Johnson and her husband moved to Indianapolis to remain close to IU Health.

On July 3, 2020, Johnson heard that word “Remission,” and she again cried – this time tears of joy.

“My doctor and the rest of the team are heaven sent,” said Johnson. “I am so thankful. They have taken great care of me and it’s not like I’m just any patient. They treat me like family.”