Published on October 14, 2020
Dan Symes’ Story
Hear the powerful story of a non-Hodgkin lymphoma patient and survivor who is in remission after being told that without the right treatment, he only had a few months to live. With chemotherapy and transplants out of the question due to their incompatibility with his particular NHL progression, a clinical trial utilizing CAR T-cell therapy saved his life. Listen and read as Dan Symes shares his story and advice for fellow patients.
CAR T-Cell Therapy Saved My Life
My name is Dan Symes, I am 69 years old and live in Massachusetts with my wife Jodi. I am happy to be able to share my cancer experience with you.
In the fall of 2012, my doctor found a lump in my neck at my annual physical. Tests revealed a diagnosis of non-Hodgkin lymphoma. After getting a second opinion, I agreed to the “watchful waiting” strategy that was recommended by the oncologists. I had scans and bloodwork every six months at first, and then annually as time went on. I felt healthy and was able to do everything I’d always done until late 2015 when things started to change.
My family has a history of heart disease, so seeing the cardiologist made sense. A cardiac cath showed a 90 percent blockage and I had two stints put in during August of 2015. We were relieved to have found the problem and I expected I’d feel better within a few days of the procedure. Instead, I got more and more short of breath and returned to the hospital about a week later. After weeks of tests and scans, I was told that I had diffuse large B-cell lymphoma and that my intestines were involved. I was losing blood, which was causing shortness of breath.
I returned to the oncologist at our community hospital after getting a second opinion at a Boston teaching hospital and agreed to the recommended course of chemotherapy. The first treatment was R- CHOP. I’ve learned that there’s a “playbook” for cancer — if you’re diagnosed with “this” you get “that.” In February, the scan showed that not only was the cancer not responding to R-CHOP, but it was also getting worse. Around this time, we also had the tumor sequenced; Jodi worked at a cancer care company and we were aware that understanding the genomic makeup of the cancer could lead to a more targeted treatment. We shared the report with the local oncologist and he admitted that he really didn’t understand what this meant. He referred me to a Boston hospital and there I received more chemo and started to prepare for a stem cell transplant.
I was starting to feel sicker and was getting weaker, but I kept working and getting treatment. I was hospitalized for R-ICE chemo for three days every six weeks; when I wasn’t in the hospital I was working and spending time with my wife. My stem cells were retrieved during this time in preparation for the transplant. In May of 2016, however, a scan showed that the cancer was progressing; the chemo wasn’t working and a transplant was now out of the question. At that appointment, we asked the difficult question, and the doctor told us that without the right treatment, I only had a few months to live.
At this point, my only hope was getting into a clinical trial. We were referred to another Boston teaching hospital, and to another oncologist. The doctor spent well over an hour with us at the first appointment. We discussed the report and he described a few different clinical trials that could be helpful. The CAR T-cell treatment was the first he described and I told him I wanted to be enrolled in that study — to me it made sense to use my own cells. So, I said, “That’s the one I’d like to have.” He said, “There’s a waiting list.” I asked, “Can you put me on it?” He said, “You already are.”
While I waited to move to the top of the list, I continued having chemo just to keep the symptoms at bay. By the middle of June, I was very sick, required frequent blood transfusions and chemo infusions, and was going to the hospital at least once or twice a week. At this point, my wife and I took time off from our jobs — me to rest and to try to feel better, and Jodi to take care of me.
Sometime over the summer my T cells were retrieved and sent off to be re-engineered. On Labor Day weekend of 2016, I was admitted to the hospital to prepare for and receive my CAR-T cells. That actual CAR T infusion was very uneventful. The nurse came into my room and spent hours setting up for every possible contingency. When the doctor finally came in, the infusion didn’t take very long at all, after all of that waiting. I was fortunate that I didn’t have any real side effects, just a low-grade fever, so I remained in the hospital for ten days for monitoring. I rested and waited. When I was admitted, Jodi had pushed me down the hall and into the room in a wheelchair. Ten days later I walked out of the hospital on my own. It was slow, and maybe not pretty, but I was determined to do it.
Six weeks later I had another scan and we met with the doctor to go over the results. Jodi and I waited in the exam room and the doctor walked in and said, “You’re in remission, my friend.” I will never forget those words. He put the “before” and “after” scans up for us to see. In the before, I was lit up like a Christmas tree; in the after, it was gone. In just six weeks.
It’s four years later now, and I am thankful to say I’m still in complete remission. I return to the hospital for bloodwork every six months; the only side effect I’ve experienced is a weakened immune system, but the most recent bloodwork showed more improvement in that. Jodi and I retired in 2018 and spent almost two years traveling on our 43-foot power catamaran and completed a life-long dream of mine to do The Great Loop, a 6000-mile trip on intracoastal waterways.
I am grateful for this treatment and to have had the opportunity to choose it. My wish is that there are more treatments like this available because, in my opinion, not only is cancer a horrible disease, but chemo is a horrible cure. Thanks to CAR T-cell therapy, I am able to live my life to the fullest and hope to do so for many more years.
By Dan Symes
Transcript | NHL Patient Story: How A Clinical Trial Saved My Life
How Did Cancer Interrupt Your Life Plan?
Dan Symes: I had this bucket list of retiring, buying a boat, living on the boat, doing the great loop and all that. And I got sick enough to the point where I had stopped. You can't be wasting that kind of money now. You're never going to need it.
Cancer just was this scary boogeyman that's out there. And if you got cancer, it was, you were done. You had some time, but it was basically all over. And now all of a sudden, I got cancer. Why do I have cancer? I'd never been sick. I've never been anything.
How Did You Find Out About Your Non-Hodgkin Lymphoma Diagnosis?
When I got the call from… It was the ear, nose and throat guy that had biopsied the lump on my neck. He called me. And I'm in the construction business, a field manager, and I'm walking around the construction site and I get the phone call and it's like, shit. Now what do I do with this? And here, I'm trying to take down a phone number, which I'm writing on a floor in a house somewhere so that I could call my primary back and get some news from him. I think I went home and pouted for a while right after that.
What I definitely learned right from the beginning is there are lots of options. There are lots of people living with cancer and just shouldn't get yourself depressed. The biggest thing, I feel, is a positive attitude. Stay off the damn Internet. Don't Google it. Cause you're just going to think you're going to die. Just stay away from it.
What Advice Can You Offer a Newly Diagnosed Patient?
I would push for tumor profiling. The information that came back from that would have been extremely helpful in the beginning. They more or less told me when they profiled my tumor, that my first round of chemo, that's not going to work. It could have saved a lot of time. Could have saved a lot of chemo getting to where I finally got to. I just think it's a great thing for anybody to do in the beginning.
And after my recovery and everything like that, we bought a boat, we did our trip on a morning, out in front of the house. We go out whenever we want to now because we're both retired. It kind of changed my attitude negatively for a little while, but then I got better, and I got to do everything that I had planned to do.