CAR T and the Fatigue Fallout

When I was going into the trial for CAR T-cell therapy, I knew it required a seven-day hospital stay. I told the admitting nurse that I would be out of there in seven days! Unfortunately for me, it ended up being eighteen days.

Certain types of CAR T require a mandatory seven-day hospital stay. Others are treated outpatient and require the patient to stay within thirty minutes of the hospital for two weeks or more after their CAR T infusion.

Amazing to see the success of CAR T

As a CAR T survivor, I try to support others going through the process whenever possible. I have spoken directly with patients getting CAR T outpatient treatment who have received no side effects at all. They were bored because they had to stay near the hospital with nothing to do. Most importantly, they have received complete remissions. It is amazing to see the progress and success.

Some people (like me) have side effects

However, that is not the case with all patients receiving CAR T. Some do have side effects in the form of CRS, cytokine release syndrome, an immune system response to the work of the CAR T-cells. Sometimes called a cytokine storm. A few of the symptoms are high fevers, chills, body aches, low blood pressure, fatigue, and neurological issues, where you can get a form of neurotoxicity; I was diagnosed as being in an “altered mental state,” a lot of which I can’t remember, and a lot I don’t want to remember. Those symptoms can include an inability to do simple motor tasks, to speak and answer simple questions, and to have hallucinations.

Extreme fatigue

What I didn’t realize when I was hospitalized and going through CAR T was the fatigue that was building up in my body. In the hospital, I was limited to getting out of bed only with assistance, which, when I read the nurse’s notes long after, I saw I was not very good at following that rule and kept trying to get out of bed and setting off the alarm, oops...

After eighteen days, I was allowed to go home. I was wheeled out thirty pounds lighter than when I went in. On the way out, the nurse reminded me of my seven-day claim, which I found only mildly amusing…

When I returned home, that is when I realized I had unbelievable fatigue. With chemotherapy, I am sure I am not alone in going through a period of fatigue a few days after treatment, having little to no energy and can’t really do much.

With CAR T it was like that squared, it felt like carrying around a ton of weight on my body. Every movement took effort, walking from room to room was a chore. Just picking up a drink took effort. So much so that I had to go into the local clinic for IV fluids to get hydrated.

Grateful for my caregiver, my brother

At that time, I needed a caregiver more than ever; I am fortunate my brother was there for me throughout all my treatments, but I never needed him more than when I first returned home from CAR T. After five days at home I was starting to regain some semblance of strength and was able to release him of his duty.

My strength slowly returned at what felt like a snail’s pace. I remember still being so fatigued at my thirty day appointment and asking my oncologist when it would let up. By my sixty day appointment and another clean scan, the fatigue was finally letting up. There is a small hill on a road near my home that I walk with my dog almost daily. I could only make it to the base of the hill and could not climb it, but I finally graduated up to climbing that hill again.

Playing tennis within 3 months!

After the ninety day check up my energy was returning and I celebrated another clean scan by hitting the tennis courts with friends. I cracked open the can of tennis balls I had brought with me to the hospital for my procedure with my Day Zero written on the can. A moment of celebration I will always appreciate and remember.

Not everyone experiences it, and for most, the fatigue will resolve in a few weeks. For others, it can take longer. Some patients need physical therapy to help regain strength and mobility. For me, it felt like it was taking forever at the time, but it did finally resolve.

I remember being wheeled out of the hospital that day and saying to myself, "Never again! This better work." But I can tell you now, after time has passed and I have had my life given back to me thanks to CAR T-Cell therapy, I would do it all over again.