My Boston Marathon

By Michele Palmer- Patient

The morning of the 2018 Boston Marathon started ominously: gusty winds, drenching rain, and temperatures in the thirties. Not the best weather for a race – or for me. It was the day I was discharged from Massachusetts General Hospital, several weeks after receiving CAR-T Cell therapy for CLL.

I had personally run many “marathons” myself. Since being diagnosed with CLL five years earlier, I had been through every available treatment: chemotherapy (not effective because I had 17p deletion), steroids (effective but not desirable long term), then ibrutinib as soon as it was approved by the FDA. I did well on ibrutinib for several years, and when I relapsed, was given venetoclax. While on venetoclax, I was asked to participate in a clinical trial for another drug. About a month into the trial, they took me off it. My red blood cell count had dropped so low that I needed several transfusions. After that, I started idelalisib (also not good, long term).

At that point, I was told about a CAR-T trial for CLL at Mass General. At first, I resisted. I didn’t want to be in the hospital for a month and I was afraid of radiation from numerous scans, etc.

After long discussions with doctors and family, as well as several people who had gone through CAR-T therapy successfully, I agreed to it– mostly because there really was no other option.

Once I made the decision, I felt relieved, even upbeat about it. On a warm February day, I went to Boston for the apheresis process (removing the T-cells from my blood). Six weeks later, I was admitted to the hospital and received my re-engineered T-cells. I was so happy to get them back, I sang a song for my husband, the doctor, and others in the room to the tune of “Hello Dolly”:

“Hello, T-cells, Well, hello T-cells, it’s so nice to have you back where you belong.

You’re looking swell, T-cells, I can tell, T-cells,

You’re still glowing, you’re still growing, you’re still going strong…”

I waited for symptoms, but aside from up and down fevers and fatigue, there was nothing dramatic. Two and a half weeks later, I was discharged. Rather than return to Connecticut, my husband and I decided to stay at a nearby hotel until my doctor’s appointment later in the week. Walking out of the hospital into that cold, windy, rainy day of the Boston Marathon, I didn’t realize that my own marathon with CAR-T wasn’t over yet. In fact, I would soon be heading into a storm far worse than the one outside.

Over the next few days in the hotel, I felt literally and figuratively under the weather. I couldn’t pinpoint exactly what was wrong, but I had trouble walking, and my handwriting in the daily journal I kept was becoming increasingly illegible.

The day of the doctor’s appointment was gray, windy, and cold. It was only a five-minute walk from the hotel to the outpatient office building, but I wasn’t up for it, so my husband and I took a cab. In the office, after my vitals were taken, the nurse asked me the same questions I had been quizzed on several times a day during my stay in the hospital: What’s my name? What’s the date? What city am I in? Who’s the president? I had always joked “Do I have to answer that one?” to the last question. Now, as I tried to answer the questions, I couldn’t form the right words and began speaking gibberish. After an emergency brain scan showed neurotoxicity, I was readmitted to the hospital.

My immune system had gone into overdrive – a cytokine storm of seizures and hallucinations. Thankfully, I don’t remember most of that lost weekend. Thankfully, the steroids I’d been given kicked in and calmed the storm. Thankfully, my doctor reported the good news: no evidence of CLL.

In a few days, I was discharged again; however, my marathon was not quite over. Back home, I became very moody – anxious or aggressive one minute, and depressed and crying the next. I called my doctor. He thought I was suffering from PTSD, which, no doubt, I was. “You’ve been to hell and back,” he said, and suggested I take an anti-depressant. I resisted. Meanwhile, my husband had been researching Keppra, the anti-seizure medication I had started in the hospital after the neurotoxicity, and he found that it can cause severe emotional distress. He even found a website where people posted their terrible side effects from the drug. I was switched to another anti-seizure medication, and my extreme symptoms disappeared.

I still needed to get over the trauma of the whole experience and decided to take the prescribed anti-depressant. It was a long physical and emotional recovery, and I did a lot of self-help therapies as well – walking, qigong, journal writing, meditating.

Now, more than two and a half years after CAR-T, it’s still difficult to relive some of it. Yet despite everything I went through, I’m forever grateful. I received the best care from the doctors and medical staff at MGH, and the deepest love from my husband and family. Without them, I couldn’t have won my Boston marathon.