Why is there a zoo in infusion? Ask this CAR-T patient

One of IU Health Simon Cancer Center’s patients found a way to pass the time while he was in infusion – and entertain the nursing staff too.

Nurse Susan Westrick holds a tiny elephant in the palm of her hand.

“This is the one he made for me,” she said. It’s a paper elephant and part of a herd of six. There are other paper animals too. The origami was created at the hands of a patient from Northeast Indiana.

Jeff McAfee spent many hours at IU Health undergoing treatment for lymphoma. He passed the time creating the small zoo of paper animals displayed in the infusion center at IU Health Simon Cancer Center. On his recent release day, the nurses said they were happy to have the little keepsakes to remember McAfee.

It was Labor Day 2017 when McAfee thought he’d torn a rotator cuff after working on a Habitat for Humanity home. His doctor told him to give it three weeks and see if the pain eased up.

“I went back three weeks later and then three weeks later and it still wasn’t better,” said McAfee. Then on Dec. 11, 2017 he went to an orthopedic surgeon near his hometown of Berne, Ind. He and his wife Linda, his high school sweetheart, were married 45 years ago. They built a home on 40 acres of wooded property with a three-acre pond in Adams County and made the move on Labor Day Weekend 39 years ago.

It was the orthopedic surgeon who notified them that McAfee had a torn rotator cuff but he had something more. An MRI showed a mass in his right shoulder. He had cancer. In a matter of days, McAfee was scheduled to meet with a Fort Wayne oncologist. The first thought was that he had sarcoma.

“We thought if it was sarcoma he’d probably have to have his arm amputated,” said Linda. “It sounds crazy but we rejoiced when we heard the word ‘lymphoma,” add Jeff McAfee. By the beginning of the New Year, McAfee was starting a regime of chemotherapy.

“I went through six rounds and had good success. The large cell lymphoma reacted well. The swelling went down and I was able to move my arm,” said McAfee. At the end of April 2018 he finished chemotherapy and followed with 20 days of radiation at a hospital in Fort Wayne.

Three months later a PET scan showed no evidence of the disease. The parents of three sons and grandparents to 12, looked forward to getting life back to normal. Jeff went back to work and pursued the hobbies he loves. He likes bird watching and hiking and once completed a 100-mile trail in Colorado. He also enjoys fishing for red drum – also known as channel bass – in the backwaters of Louisiana. He and Linda go for long bike rides together and have a goal of riding in 48 states. So far they have 10 more to go.

When he got the “all clear” after chemo and radiation he joined a two-day, 200-mile bike ride benefiting Gateway Woods, a Christian school in Leo, Ind. offering residential and day-treatment programs for students.

“It’s definitely my faith that has kept me going,” said McAfee. “If we wouldn’t have had that I’m not sure how we would have gotten through this. There have been people praying for us from the east to the west, from the north to the south.”’

The couple didn’t know then but they were about to face another battle.

In early October Jeff had swelling in his right knee. He had been running and thought it might be a pulled muscle. But further tests showed cancer.

“They did a FISH analysis and it showed three breakages in the DNA causing it to be very aggressive. It was triple hit lymphoma,” said Linda. Fish Cancer Diagnosis or Fluorescence in situ hybridization is a test that maps the genetic material in human cells.

He again began chemotherapy in Fort Wayne in preparation for a stem cell transplant. His oncologist referred McAfee to IU Health Simon Cancer Center and on Nov. 12, 2018 he met Dr. Jose Azar.

His course of treatment changed. Instead of a stem cell transplant, McAfee became a candidate for an innovative gene therapy known as CAR-T cell. The therapy uses custom-made cells to attack a patient’s own specific cancer. CAR-T cell therapy allows doctors to isolate T-lymphocyte cells – the body’s cells that fight infections and are active in immune response. The T cells are then engineered to express a chimeric antigen receptor (CAR) that targets a protein on a patient’s cancer cells, attaches to them and eventually kills them. Indiana University Health is one of the first sites in Indiana to administer the treatment.

Under the care of Dr. Mohammad Abu Zaid he spent 11 days at IU Health and became one of the first patients at IU Health to receive the CAR-T therapy on March 25, 2019. Three months later he received the news he was hoping for, “No evidence of the disease.”

He tears up as he talks about the care he received at IU Health.

“I would say the level of care we got from the nurses and doctors was amazing. We never felt rushed with all the questions we had about CAR-T. Every doctor was willing to sit and talk and the level of communication between departments was amazing,” said McAfee. “It’s not just the nurses and doctors, it’s everyone from the receptionists to the people in the food service,” added Linda McAfee.

“I would say we are invested in IU Health,” said Jeff McAfee. “I would say IU Health is invested in you,” said his wife, adding that it will be strange not returning to the hospital.

But they already have plans. Their 45th wedding anniversary is in August and they hope to head west and ride their bikes in four more states.

— By T.J. Banes, Journalist, IU Health.
Reach Banes via email tfender1@iuhealth.org.