Things I Wish I Knew

Expect to be admitted to the hospital. I thought that since I was generally in good health and handled chemotherapy and radiation well, I would sail through CAR-T too. There is a high probability you will be admitted for either Cytokine Release Syndrome (CRS) or neurological side effects. My doctor estimated the likelihood at 90%. That changed my outlook — when I ran my first fever and was required to be admitted, I didn’t have the anxiety I would have had if I wasn’t mentally prepared.

CAR-T is a very different experience than chemotherapy or radiation. Most people describe Cytokine Release Syndrome (CRS) as a terrible flu. My symptoms were consistent with that — fever, headaches, body aches, nausea, night sweats, and overall fatigue. I would compare it to the flu but longer and more pronounced. I was fortunate enough not to experience neurological side effects.

You cannot take outside medications like Tylenol or Advil on your own. This is strictly enforced so as not to mask potential infections. There are limited pain relief options for CRS symptoms until infection can be excluded. I found that cold compresses, heating pads, and Lidocaine patches gave some relief. Flexeril also helped with muscle pain.

Ruling out infection takes time — be patient. Blood culture results in my case took about 24 hours to return. It took 24–36 hours to fully exclude infection and confirm that my symptoms were from CRS. Once that was known, treatment options to address CRS became available.

Sleep deprivation is a real challenge. After multiple days of CRS side effects, lack of sleep deeply affected me. Melatonin helped somewhat and Flexeril provided some drowsiness, but I did not get more than a couple hours of consistent sleep when CRS symptoms were at their worst.

The Central Line is both the worst and best part of CAR-T. On the negative side: it is very awkward, showering is difficult (can’t get it wet), and sleeping with it takes getting used to. On the positive side: blood draws are effortless. I had 50+ blood samples taken and dozens of IV medications over 30 days — zero arm pokes.

Pack an overnight bag and keep it ready. Bring extra underwear and socks — you may be admitted for several days. I had several bouts of night sweats and needed to change multiple times. Having a bag ready eliminated a lot of stress when we had to leave quickly.

Set up group texts for family and friends updates. My wife and I created several text groups on her phone to update people throughout the process. It was far easier to notify a big group rather than dozens of individual people one by one.

It’s OK to cry. If you’re a CAR-T candidate, you’ve probably already had some very challenging days dealing with your disease. I found that letting out emotion was very cathartic and a good reset for me. Don’t hold it in.

Lean on your caregiver to take notes. You will be bombarded with information leading up to and after the infusion. It is overwhelming and you will forget things. Between my wife and I we figured out a good system. You’ll also receive plenty of take-home literature.

Your immune system will take about a year to fully recover. Wearing a mask and avoiding public crowds will be the norm for a while. My doctor said to expect approximately 1 year for full immune recovery.

Have COVID tests on hand for visitors. It’s generally recommended to limit visitors, but family or friends who can help with caregiving are invaluable. Have them take a COVID test before coming to visit.

Plan your housing near the hospital for at least 30 days. There were a few options for accommodations. We opted to rent an Airbnb for 5 weeks (including the pre-CAR-T procedures). It was wonderful to have our own place and ability to cook our own meals.

The return-to-work timeline varies for everyone. In my case, I returned to the office around Day +60, remaining diligent about wearing a mask until my CD4 counts exceeded 200.

Understand the insurance and cost situation early. The cost of CAR-T treatment can be quite high. In my case, my employer’s health care plan covered the entire bill. Since the treatment was recently FDA approved for secondary refractory DLBCL in 2022, I believe this helped with coverage. Mayo Clinic was very good about obtaining pre-approvals for the infusion.

Trust the process and the people. As scary and overwhelming as my initial thoughts were about CAR-T, the doctors and providers are at the top of their field. Just know that for every potential side effect, there is a treatment. I would do it all over again in a second.