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In 2004, five-year-old Patrick was diagnosed with Acute Lymphoblastic Leukemia (ALL), beginning a fight that would include six relapses and span his entire childhood. After chemotherapy and a bone marrow transplant (BMT) failed to treat him, Patrick joined the CART-19 clinical trial at Children’s Hospital of Philadelphia at age 14. His T-cells faded away, and he became patient number 4 in the huCART19 trial. In 2018, Patrick received his ninth and final dose of CAR-T, then received his second bone marrow transplant two months later. Patrick has been in remission ever since, a milestone he has not reached since he was first diagnosed!

In his own words, Patrick shares the story of his treatment journey and the road to CAR T-cell therapy.

 

I relapsed for the third time with ALL in March of 2014. Feeling as though we had run out of options, Cincinnati pointed us in the direction of CHOP and the CAR T-19 clinical trial going on.

A few weeks after the third relapse, we were officially accepted into the CTL019 study on April 1, 2014. My mom, dad and I flew up to Philadelphia for the first time three days later on April 4 and had my T-cells extracted on April 8, returning home April 9.

My entire family, including my two brothers, flew back to Philadelphia on July 27. I received T-cells for the first time on August 5, 2014, and in that moment I became patient number 34.

Thankfully, the side effects I experienced this first time around weren’t terrible. I only went inpatient with fevers twice, both times for just two days, and we were home August 26. I was finally allowed to go to back to school in-person after over a year and a half of homeschooling and began my sophomore year of high school on September 18.

Unfortunately, by November 4, 2014, no T-cells were detected and B cells with CD19 were present. This change required that my mom and I return to Philadelphia on November 9 for me to receive a booster dose of the cells without conditioning chemo on November 12. We then flew back home to Louisville on November 21. This booster with no conditioning chemo had no effect, as no T-cells were seen as of December 19. So, after a few consultations, we were told to pursue the humanized CAR-T trial as our next best option. By January 16, 2015, I was back up in Philadelphia getting my T-cells extracted for the second time.

After a few months home, we were back in Philadelphia May 17, with conditioning chemo starting May 18. By Thursday, May 21, we found out that I had relapsed for the fourth time. Fortunately, we were already in Philadelphia, and I received the humanized CAR-T cells as planned on May 26. I officially became patient number 4 in the humanized CAR-T trial. I spiked a fever like I did the first time I received CAR-T and was inpatient for four days. But after 31 days we were back home in Louisville on June 16.

On September 9, 2015, my mom and I had to fly back to Philadelphia for me to receive not only my first booster dose of the humanized cells on September 11, but also the first booster dose of humanized cells ever given. This was deemed necessary as B cells, but no blasts, were evident in my body as of September 7. The booster was done without conditioning chemo, leading to it having no effect on my B cells.

It was decided that moving forward, whenever I received booster doses, conditioning chemo needed to be given. So, that’s exactly what happened when we flew back to Philadelphia on November 15. Conditioning chemo was started November 16, finished the 19th, and my second humanized booster dose was administered November 24, 2015. This was two days before Thanksgiving, which thankfully, we were able to spend as a family as my brothers and dad drove up to spend it with my mom and me. This became a memorable experience for all of us because not only were we spending Thanksgiving in Philadelphia, but we ended up going to a Hard Rock Cafe for the big meal. And just two days later, I tried my first Philly cheesesteak ever! We were home by December 4, with my B cells still absent as of December 21.

Our next visit to Philadelphia was in early March 2016 after seeing that my B cells had returned. During our visit with Dr. Maude on March 7, I asked her, “What if the treatment doesn’t work?” She couldn’t give us a definitive answer, but my mom brought up PD1 targeting drugs. Dr. Maude smiled and mentioned that she hopes to eventually have a trial on the effectiveness of PD1 inhibitors when combined with T-cells to combat leukemia.

A little over a week after this conversation, on March 16, 2016, I received another booster T-cell infusion. Fast forward 6 months to September 8, 2016. I received a bone marrow biopsy and LP. When the results came back, we found out I had relapsed for the fifth time.

Following this fifth relapse, my T-cells were collected for the third time. From mid-September until early November, I was back to school, playing basketball, spending time with friends, and other things a 17-year-old should be doing. But we were back in Philadelphia by November 6, and conditioning chemo started on the 7th. I then received the cells collected back in September on November 15, 2016.

I was admitted to 3N with a fever on November 18, experiencing the worst cytokine storm in the 7 doses of T-cells I had received up to this point. I experienced nausea, dry heaving, vomiting up gastric juice, had 103-degree fevers, vigorous shaking and chills, was unable to eat any solid foods, dropped 10 pounds in about a week, and being a Type 1 diabetic, experienced several blood sugar issues.

We were out of the hospital on November 23 and my mom and I experienced our second consecutive Thanksgiving in Philadelphia on the 24th. But this time, my brothers and dad were unable to be there with us. Thankfully, my mom and I had some fun in the coming days, as I was able to go to the Packers-Eagles Monday Night Football Game on the 28th.

The next day on November 29, I received Keytruda the first time, the PD1 inhibitor Dr. Maude had talked about a little over 8 months prior. Dr. Maude specified that it is successful in treating lung cancer and melanoma, but there wasn’t a lot of concrete data with leukemia regarding effectiveness.

Thankfully, I experienced no side effects from the infusion, but I was still down 12 pounds from the initial cytokine storm as of November 30. Thankfully, we were home before Christmas on December 20, but by February 5, 2017 we were back in Philadelphia. I started chemo on the 6th, and I received my fourth booster of humanized CAR-T on the 13th. This was my fifth booster. Luckily by this point, there was still a small amount of T-cells around before the booster. Dr. Maude explained to us that the Keytruda was the most probable cause of the T-cell persistence. With that in mind, I received another dose of Keytruda 2 weeks later on February 27 and was back home the 28th.

Given the fact I was receiving Keytruda every 4 weeks after this, we were told at our appointment in July that each dose increases the chance of complications. However, given that it was doing so well for me, I continued to receive it every 4 weeks. I received my thirteenth dose of it on October 13, 2017, but after I began to experience the autoimmune complications that we had been warned about In July. By October 21, I was experiencing severe GI issues. I was vomiting every day, nauseous, waking up to puke, experiencing diarrhea and had no appetite. Keep in mind that prior to these effects, I was 143 pounds.

I got scoped on November 21, 2017 with the scope detecting the early stages of colitis in the intestines, as colitis is a side effect of Keytruda. It also showed esophageal irritation due to all the vomiting that had happened over the course of the previous month. By December 1, six weeks later, I was down 20 pounds at 123 pounds. The good news is that I didn’t have to get anymore Keytruda, as Dr. Maude had planned to stop the Keytruda at the end of December anyway. So, it was discontinued a few weeks earlier than expected.

Three weeks after the scope, on December 13, I had a bone marrow and LP and also finally hit a very important milestone in the CAR-T program. I was moved into long-term protocol for the first time in the three years I had been receiving CAR-T. It was a huge milestone reached, but a few days later we were hit with the news that my MRD results of the bone marrow were inconclusive. So we were asked to fly back to Philadelphia January 3, 2018, for a repeat bone marrow transplant on the 4th. We returned home January 5, and I returned to my college engineering classes the next week starting the 8th.

I knew how long it took for results to get back and I also lived by myself my freshman year of college. This is important because I knew that my mom should have called me sometime that week telling me if I was still in remission. But she would never call me with bad news knowing I was by myself. And she didn’t call. So, I had my answer to the results of the bone marrow transplant before she even told me. When I went home that Friday after class the first question out of my mouth was, “I’m guessing I relapsed?” She just nodded her head yes.

With the combination of humanized cells and Keytruda not keeping me in remission, it was decided that I would receive the humanized cells one more time and use the treatment as a bridge to a second bone marrow transplant back in Cincinnati. And so, I received my ninth and final dose of CAR-T on March 5, 2018.

After the T-cells, I received my second bone marrow transplant in May 15, 2018, and I’ve been in remission ever since.

Patrick celebrated his 6-year remission mark May 2024, which is the longest he has been in remission since he was diagnosed in 2004! Patrick graduated from the University of Louisville in 2022 where he studied nursing. Today, he works as a registered nurse on the bone marrow transplant unit at Cincinnati Children’s Hospital. In his free time, he enjoys playing golf and attending Cincinnati Reds baseball games.

We receive messages from patients and families around the world with experiences similar to Patrick’s family. We do whatever we can to be a resource for these families to help them get enrolled in a clinical trial or find a treatment center where they can access CAR T-cell therapy or other advanced therapies.

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