Diffuse large B-cell lymphoma: Gay Lynn's Video Story

Summary: Gay Lynn Fox shares her experience undergoing CAR T-Cell therapy, the emotional toll it took and how she's moving forward with her life.

Transplant: 2019

CAR T therapy: 2020

Discovery and Diagnosis: “My hand brushed against my leg…and I felt a lump.”

(00:23) Gay Lynn Fox:  Well, in 2015, I was at a very busy point in my life. I had a son going to college. My other son was a junior in high school, full of activities. I was tutoring and working at a dermatologist's office part-time.

(00:35) When we were moving my son into college in the Fall of 2015, my hand brushed against my leg as I was moving a box, and I felt a lump. It was round like a golf ball, and I knew it shouldn't be there.

(00:54) I had a biopsy, which showed that I had diffuse large B-cell lymphoma, and already they knew it was an aggressive type because this lump kept growing. So by the time I had my biopsy, it was the size of a lemon.

(01:18) I went through a series of chemotherapy called R-CHOP. I responded well to R- CHOP. It was effective, and I showed complete remission. At that point, stage two diffuse large B-cell lymphoma is 80% remission with R-CHOP.

The First Relapse: A Harder Battle: “When I felt that, I felt my heart stop.”

(01:44) I was in remission for about a year, and then, on the back of my neck, I could feel a little bump. That showed up on a PET scan, and they said it is follicular lymphoma. When I felt that, I felt my heart stop, and I really didn't feel like I could breathe because I knew what it was. It had transformed into a relapse of my diffuse large B-cell lymphoma, and it was stage four, and this would be terminal if I did not have a treatment to stop it in its tracks.

(02:32) At that time, the treatment involved a stem cell transplant. I was devastated. I kept turning to my husband, who was in the appointment with me, when the doctor was just being honest and putting out my prognosis of what my life expectancy would be without a successful stem cell transplant. I kept looking at my husband and going, can you believe this? Do you think this is right? I can't believe it.

The Stem Cell Transplant and a New Hope: “You’re missing those so that you can be present for more.”

(03:00) I had felt like I had dodged a bullet the first time with just having the R-CHOP, being able to stay in my hometown of Asheville, North Carolina, where I had my support system and my medical team in place. Well, you can't get a stem cell transplant in Asheville, so I had to go to a bigger hospital far away.

(03:23) We had our second opinion at MD Anderson and chose to go there. I knew that for my case, the outcomes were 50/50. I remember the oncologist when he could see what a blow this was to me and just being away from our friends and family for so long, having to isolate for so long. He said, "It's going to be tough. There will be things in this next year that you will miss. You're going to miss birthdays, celebrations, anniversaries, and weddings, holidays, but you're missing those so that you can be present for more and for the future ones."

(04:10) I grasped on to that. He was putting that in a term I could understand. I was willing to sacrifice my immediate future for a longer future. And when he could see that I was all in, my oncologist winked at me and said, "Now you, I'm going to go with 51%, 51/49, we're going to say." And even though I knew he just said it off the top of his head, that gave me some hope. Hope was meaningful for me.

The Second Relapse: CAR T-cell Therapy: “At this point, the only treatment left was CAR-T.”

(04:41) So in 2019, we discovered that I had relapsed once again. At this point, the only treatment left was CAR T. Now, when I got my stem cell transplant, they talked to me about CAR T, but you couldn't have CAR T until you failed a stem cell transplant due to insurance. You can push back on that now and petition to have CAR T be your next treatment. But at that time, I had to fail the stem cell transplant first.

The Memory Loss and Recovery: “That’s the last thing I remember.”

(05:18) When the CAR T activates, it goes through your entire body and when it hits your brain, it can sometimes cause a memory lapse for three days. My husband and I were playing cards one night and we were playing Go Fish because I was having trouble concentrating. And I said to my husband, "We have to quit. My brain's getting tired. It's just getting tired. I need to rest." And that's the last thing I remember.

(05:50) They would ask me questions. Sometimes I would answer things that were incorrect and sometimes they said, I just wouldn't answer anything. I have no memory of this. I do not remember any pain. I don't remember any confusion. I don't remember anything. I do know that my muscles were weakened, obviously, because my neurotoxicity, that affects everything. I was not getting up and walking.

(06:17)  So the three days pass and I wake up, the nurse is talking to me, "Well, who are you? What's your name?" And I said, "Well, my name is Gay Lynn Fox: ." And they held up a pennant of my alma mater, which was Mississippi State University. And they said, "What's this?" And I said, "Well, that's Mississippi State, the Mississippi State Bulldogs." And they got very excited. And so they called my husband and said, "You know what? She's back."

The Struggle to Write Again: “Practice makes perfect? Well, practice makes passable in CAR T.”

(06:47) I'm an English teacher, a high school English teacher. When you are admitted at Duke, and I think probably other areas, too, for CAR T, you write a sentence, you write the same sentence so that they can tell how you're doing neurologically. Because I'm an English teacher, of course, I had to write in cursive and I wrote, "My name is Gay Lynn Fox. I am at Duke University Hospital." And that looked the same for 10 days. They number it 11, 12, 13. Those days were gone. They just weren't on the page.

(07:22) So the first day after my mind came back, they said, "Let's write your sentence again." In my mind I said, that's great. Okay, let's do, because mentally, I'm back. But when they gave me the pencil, I couldn't hold it. I could not grasp it. That was very frustrating to me. My handwriting has taken a toll. I can write, I can fill out forms, I can write a thank you note, but I did lose a lot of stamina and a lot of depth in my hands. Practice makes perfect? Well, practice makes passable in CAR T.

CAR-T: The Miracle Treatment: “CAR-T was my salvation.”

(08:02) I went through CAR T and it was successful. Five years later, I've had no recurrence of cancer. CAR T was my salvation. I am not a fearful person anymore. I am not afraid to take a risk anymore. I knew that there would be a point in my son's lives, there will be a point where they've got to fight. There's going to be something that happens in their adult lives where they've just got to lay it all on the line. I thought, maybe one day they'll look back and they'll think, that's what that looks like.

Giving Back and Supporting Others: “Don’t do it by yourself.”

(08:45) Don't do it by yourself. BMT InfoNet has peer-to-peer outreach. They have social workers; they have support groups. If you reach out to them, they will answer.

(09:00) Don't let this isolate you. There's so much, as a cancer patient, you cannot control. But that is one thing you can control: how much you reach out. I would urge those people who say, "Well, I wish I had that." Reach out to BMT InfoNet for their support services because you will hear back.

(09:23) I serve as a mentor for the peer-to-peer program with BMT InfoNet's mentorship program. I've had phone calls with people all over the country. I've even talked to someone overseas about CAR-T and told my story to them. I would say ask questions. Information is power.

The Gift of More Time: “I missed my son’s college graduation, but I was able to dance with that son at his wedding.”

(09:47) I missed my son's college graduation and I missed Thanksgiving with my family. I missed my son's college graduation, but I was able to dance with that son at his wedding.

(10:04) CAR T was my miracle. I can't believe it exists. If you told me that we're going to do this to your T-cells, put them back in your body and you're going to be cured, I wouldn't have believed it. But I was in a place where there was nothing else. I had no other options. So I hoped that this science fiction was true, but it was better than science fiction. It was a miracle. It saved my life.