The Roller Coaster Ride to CAR-T Cell Therapy

Sometimes, I look back on my cancer journey and compare it to a roller coaster ride. There were so many ups and downs, twists, turns, and bumps on the ride.

Twists and bumps on the treatment journey

To get to CAR-T-cell therapy, most patients have to have failed at least two lines of treatment, meaning you have gone through two different types of cancer treatments like chemotherapy or radiation, and still the cancer either is not defeated or returns quickly.

In my case, my coaster ride consisted of two different kinds of chemotherapy, an autologous stem cell transplant, and then a clinical trial for CAR-T.

One thing after another

Once I was diagnosed and started chemotherapy the ride for me started, as it seemed to be one thing after the other. First, nausea and fatigue. My skin had a very bad reaction to the chemotherapy, especially if I went out in the sun. I itched all over constantly which drove me mad.

Of course, some of that was self-inflicted as I was determined not to let cancer and chemotherapy take away from me the things in life that I love. Like playing tennis, riding my bike, and surfing. So I probably got more sun than I should have.

A complete remission, for a while

After my first round of chemotherapy I received a complete remission. I thought the ride was over and I was going to be moving on. We even got my dog Blaze as a puppy to celebrate. Nobody gets a dog if they think they are going to die. Well, a month after getting our new family member, my cancer was back and I was back on the coaster.

More chemo, more skin problems, then a blood clot in my lung, sedated, hospitalized, then came ear problems. When going through treatments, it seemed like I kept springing leaks everywhere aka, bumps on the ride.

Another failed remission, then CAR T

After going through the stem cell transplant and receiving a complete remission, which was another not-so-fun ride, I really thought the ride was over, and I truly believed I was going to step off after that recovery period when, much to my dismay, the six-month scan showed that the cancer was back again. I was back on, and this last coaster ride up to the top was steep, I was going into a bit of the unknown.

The CAR-T process itself was a bit of a roller coaster ride between the pre-testing, the apheresis process, conditioning chemo, and the actual procedure and subsequent fallout. I developed CRS (cytokine release syndrome) and went on an eighteen-day inpatient ride that I would not wish upon anyone.

Most importantly, though, the trial outcome was a success, enough so that the process gained FDA approval for follicular non-Hodgkins lymphoma just two years later.

Off the roller coaster for good

Even though it had the highest peak and was the scariest ride, when the ride was over, it was really over. That is the essence and promise of CAR-T. When it works, you can step off the cancer roller coaster ride for good. That is why in the CAR-T survivor community, we say CAR-T for the Win.