Car T-Cell Therapy For Follicular Lymphoma: Julie's Story

What Is Follicular Lymphoma?

Follicular lymphoma is a slow-growing sub-type of non-Hodgkin lymphoma, or NHL. Follicular lymphoma, a type of B-cell lymphoma, accounts for 20 to 30 percent of NHL cases. About 25,000 patients are diagnosed with large B-cell lymphomas each year.

A significant proportion of patients exhibit aggressive and life-threatening disease. Patients can live for many years with this form of lymphoma.

What Are Symptoms Of Follicular Lymphoma?

Common symptoms of follicular lymphoma include:

• Enlargement of the lymph nodes in the neck, underarms, abdomen, or groin
• Fatigue
• Shortness of breath
• Night sweats
• Weight loss

Some patients with follicular lymphoma have no obvious symptoms of the disease at diagnosis.

How Is Follicular Lymphoma Treated?

Treatment options for follicular lymphoma include chemotherapy, radiation therapy, autologous stem cell transplants, and CAR T-cell therapy. For Julie, her care took place at Franciscan Health Indiana Blood & Marrow Transplantation (IBMT) clinic in Indianapolis.

“I was started on a chemotherapy regiment right away,” Julie said. “Unfortunately, at the end of that treatment, we still weren't happy with the results. My oncologist recommended that we go to the IBMT clinic and by January of 2019, I had my bone marrow transplant. And again, we weren't getting the results that we wanted. After trying a few other treatments, we started talking about CAR T.

“I always felt like I was, that they had a plan for me. No matter what happened, whether we had a success or a failure, there was always something that we could do. Always. CAR T therapy was the right thing for me, and we had such good success with it.”

What Is Car T-Cell Therapy?

CAR T-cell therapy is an FDA-approved therapy for patients with relapsed diffuse large B-cell lymphoma. Franciscan Health Indianapolis is one of only two hospitals in Indiana to offer this breakthrough therapy in which the body’s own immune system helps fight cancer cells.

With CAR T-cell therapy, a person’s T-cells, a type of white blood cell, are removed from the patient. The cells are taken to a lab where they are modified by binding them to a special receptor gene called CARs (chimeric antigen receptors), that can find and kill cancer cells.

The newly modified CAR T-cells are then multiplied in the laboratory before being infused back into the patient. In the days before the new CAR T-cells are infused, patients will undergo three days of conditioning chemotherapy to remove immune cells, so the CAR T-cells have more room in the body to do their job.

Once infused back into the body, the new CAR T-cells find and kill cancer cells. The CAR T-cells live on in the body for long-term cancer defense.

This innovative and one-of-a-kind therapy is highly individualized because the body’s own cells and immune system become the cancer-fighting vehicle.

“If they had not been doing the tests and the research they had on CAR T, it wouldn't be there for me and I might not be in this situation I am now because nothing else was working,” Julie said. “They hold the whole staff, the staff, the nurses, the doctors, all of them. You could tell that their commitment to me was they felt like their each individual effort was critical to my healing.”

Julie’s Life After CAR T

Years after CAR T-cell therapy, Julie said she can pretty much do anything she wants to do.

“There were some side effects that are long-term and maybe permanent, which they warned me about at the beginning,” said Julie. “Those are just part of my life now, and I don't worry about it anymore.”

Julie said one of those side effects came from the steroids that she was on. “I was on a lot of steroids for a while, and it caused weakness in my legs, and I had to wear a brace for a while, just a very little while,” said Julie. “But I still have weakness in one leg, it doesn't affect my walking or running or anything, but it's the getting up off the floor part that becomes difficult. Might have something to do with my age too, but I'm going to blame it on the steroids.”

The other thing Julie struggled with was her hair regrowth. It Her hair did not come back the way it used to be.

“Those two things I kind of look at after everything I've been through, those are nothing compared to the fact that I'm alive and healthy, and that I'm here,” said Julie. “Those are the worst things that I have.”

Like many patients going through cancer treatment, she also experienced weakness, nausea and exhaustion. Julie also said her memory has also been slightly affected.

“At this point in my life, is I am so grateful to everyone. Everyone did so much to take care of me. The nurses, the doctors,” said Julie. “I just never felt like they weren't fighting for me to get better, like weren't looking at every opportunity.”

Julie said every time she got a diagnosis, and the treatment didn't work, they had something else come up.

“It gave me hope. Even if the hope was only 12%, which suddenly 12% sounds like a mountain compared to zero,” she said.

These days Julie remains under surveillance due to severely hampering her immune system.

“I have to go in once a month for IV IG immunoglobulin to boost my immune system,” said Julie.

Emotionally Julie said she was happy when it seemed she was in remission but mentally in the back of her mind she was always ready, for about the first two years, to be told that there was something wrong.

“Everything that you get, a sore on your elbow, headaches or whatever it is, just the slightest, anything that feels wrong, you immediately think that it's back,” said Julie. “Luckily that didn't happen.”

“I've been in remission for five and a half years now, and I feel like I have a strong wall set up against any cancer recurring, and I feel really confident that I'm well and will continue to be well,” said Julie.

Julie said a book that helped her a lot was “Between Two Kingdoms: A Memoir of a Life Interrupted” by Suleika Jaouad.

“She (Suleika) just laid out so well what it felt like. The fears, not the treatment, but the fears and the emotions that you go through when you can't live a regular life,” said Julie. “Everything is on hold; your whole world is on hold. While this is happening to you, it's like nothing else exists. You're not worrying about the dishes, you're not about making an appointment, you're not worried about work. Everything is about your survival.”

Julie said she tries to not forget that she had a team of people who were invested in her care.

“I could have died without the proper care, without their passion to do what they do to cure cancer,” said Julie. “As years go by, you get in your own practices again, and you get to worry about the dishes and the floor needs to be swept and the grandchildren need to be hugged and all of that, and you forget. So those things that were happening back then kind of fade. It feels good to think about it again and just realize how lucky I was to survive.”

Julie has since returned to her normal day-to-day life.

“It’s taken a long time to get that back. But now I am doing everything I want to do just at a slower pace,” she said. “I'm not hiking 40 miles like I used to but I’m enjoying life.”

Since her treatment Julie said she is more conscious of getting enough exercise and eating properly.

“I came through this as well as I did with the right kind of attitude and the positiveness in my life because it was emulated by every nurse and every doctor,” said Julie. “It was just so important to my recovery that I was treated with kindness always and care.’"