CAR T-Cell Therapy: What I Wish I Would Have Known

Day 1 Car T-Cell therapy

Looking back at this photo reminds me of everything I wasn’t prepared for. Here are the things I wish I had known that could have made the experience a little easier.

A Warning Before We Begin

Before I continue with my story about CAR T-Cell Therapy, I feel it’s important to issue a warning for those who may find certain topics triggering. My journey with CAR T-cell therapy was not without its difficult moments, and there were multiple instances where I completely broke down emotionally.

These breakdowns weren’t just fleeting moments of distress—they stemmed from a lack of proper preparation and a clear understanding of what the procedure would actually involve. I’ve come across countless stories from patients and family members on forums describing the same experience—where the gap between what was explained and what actually happened led to sheer panic.

The Reality of CAR T-Cell Therapy: What I Wish I Knew

CAR T-Cell Therapy is widely praised in the blood cancer community—and for good reason. It has given many of us a second chance at life that we might not have had otherwise. But while the science behind it is groundbreaking, the lack of clear preparation for what life looks like during and after treatment is a major gap that needs to be addressed.

Initially, I was given a broad, simplified explanation of what to expect, but the reality was far more intense and overwhelming. The guidance on cleanliness and immune system care for cell transplants was thorough, yet when it came to the specifics of what to expect physically and emotionally during CAR T-Cell Therapy, there was little to no information.

That being said, some people report feeling almost nothing during the process. But I’ve noticed a pattern—everyone I’ve spoken to who is still in remission two years post-transplant did not have the easiest experience. That’s why I tend to trust the success stories when gauging what’s normal, rather than the rare cases where everything seemed effortless.

Had I been given a more detailed and honest explanation, I wouldn’t have felt so anxious. I wouldn’t have questioned whether something was wrong with me when my emotions spiraled or when the side effects felt unbearable. Knowing what to expect wouldn’t have made the experience easier, but it would have made me feel more prepared—and that, in itself, can make all the difference.

Discovering Many Shared Experiences

It wasn’t until I started searching through countless forum discussions that I realized—my experience wasn’t unique. Many others had gone through similar struggles, sharing their stories of feeling unprepared and unsupported during the process.

Reading those accounts reaffirmed that what I had gone through was valid. More importantly, it showed me that the interpretation of my experience by those who were supposed to guide me through it was flawed.

1. CAR T-Cell Therapy is a transplant

Let's be honest, they dub it CAR T-cell therapy and it sounds almost pleasant. Like, oh, I'll just go in for my cell therapy, while sipping on a cold-pressed juice and relaxing. But that's not the reality. It's a cell transplant, except the cells have been modified to attack a specific protein unique to your type of cancer. I have no idea who came up with the term "therapy," but I rarely refer it as that. To me, it will always be a genetically modified T-cell transplant because that is what it truly is. Personally, I believe using a nicer name only adds to the confusion surrounding cancer treatment; therefore, I prefer to be upfront and direct when discussing it.

2. CAR T-Cell Therapy made me lose my hair

Despite repeatedly asking, my transplant doctor refused to give me a direct answer. After much insistence, he finally responded with an uncertain "probably not". As I expected, I ended up losing my hair following the procedure. After scouring through numerous forums, it appears that most women also experience hair loss after CAR T-Cell Therapy. While some claim it's a 50/50 chance, I have only come across posts from a few people that did not lose their hair - oddly enough, almost always men. Although this is not solid scientific evidence, it is worth mentioning. If I had known beforehand, I might have invested in a cold cap to prevent the discomfort of losing my hair, something which I had already experienced before and was dreading having to go through again. However, cold caps are usually not recommended for blood cancer patients (check with your doctor), so at least I could have been prepared with my must-have medical hair-loss products during my time at the hospital.

3. CAR T-Cell Therapy suppressed my bloodwork for nearly two years

It wasn’t until a full month after leaving the hospital that a nurse casually mentioned it could take up to two years for my bloodwork to recover. At the time, I didn’t exactly believe her—after all, I was young and had been pretty active before my diagnosis. But as the months passed and my bloodwork showed no improvement, I started to realize just how long this road to recovery would be.

It took 23 months before I finally saw a shift—my numbers shot up like a hockey stick. For comparison, even after RCHOP and intrathecal chemotherapy, my CBC panel had improved within four to five months. My endocrine system also began to rebound, though much more slowly. At 32 months, I’m finally starting to see small improvements in my hormone levels—though I still rely on thyroid medication and hormone replacement therapy.

The hardest part of recovering from something this traumatic? Trying to work and function when your body still isn’t at its best. And that brings me to my fourth point…

4. CAR T-Cell Therapy is a 2-year treatment

Even though your cancer is in remission, you are still undergoing treatment. In the first year, my life revolved around doctor's appointments and constant check-ups. As I entered the second year, I was able to scale back to monthly visits, but the fear of a relapse always loomed over me. CAR T-Cell Therapy is a 2-year treatment because while it initially has high response rates, there are still concerns about the longevity of the cells and their potential failure within that time frame. Not only was my body in shock for nearly two years, but I was a slave to the hospital for that time as well. It’s very different than chemotherapy.

5. CAR T-Cell Therapy infusion isn’t easy

My hospital stay was anything but easy. For the first six days, I didn’t experience any major reactions—just extreme sickness from the FLUCY priming chemotherapy. But on the seventh day, everything changed. My fever spiked, and from that point on, I spent 28 days in the hospital battling fevers over 103 degrees.

None of the drugs they gave me seemed to work against the cytokine release syndrome (CRS). The doctors kept reassuring me that certain medications had a 90% success rate and that my fever would break by morning—but morning would come, and nothing would change. Each failed attempt sent me deeper into panic and exhaustion. At one point, I was so overwhelmed and drained that I begged my mom to let me go. It terrified her, and she immediately called for the nurse.

I’ll never forget that nurse. She held my hand and told me something she apparently wasn’t supposed to: my symptoms were extremely common. That small moment of honesty—coming from someone who had seen countless cases like mine—eased my panic more than any medication ever could.

I’ve never been one to believe in ignorance is bliss, and in that moment, I realized just how much relief comes from simply knowing the truth. Since then, I’ve found many other women who share my experience. While I don’t want to scare anyone, if I had known what to expect, I would have been able to cope with it all so much better.

6. CAR T-Cell therapy has downtime

If I were to offer advice, I would suggest taking at least 4 months off from all other responsibilities. In my own experience, the first month was spent in the hospital, the second involved daily visits for fluid treatments, and during the third month, my parents were still living with me as I continued with medication for seizures unable to drive. By the fourth month, I was able to return to my independent routine, but I still needed at least 12 hours of sleep each night. It wasn't until January 1st that I was ready to go back to work after having CAR T-Cell therapy on June 1st. Ideally, I would have taken a full year off from work. And if money and healthcare wasn't an issue, I would have only done freelance work during the second year so that I could manage my workload based on my energy levels.

7. CAR T-Cell Therapy saved my life

I'll be honest - my experience was extremely difficult, even though the medical community may not view it that way. Yet, I must also recognize that this treatment ultimately saved my life. Looking back, I can say that enduring the process was necessary, but I do wish I had been more knowledgeable about its intensity beforehand so that I could have spoken with my employers and mentally prepared for the common side effects that caused me great anxiety when I didn't know what to expect.

Moving Forward with Awareness

If there’s one thing I’ve learned from this experience, it’s that information is power—and having the right information at the right time can make all the difference. No one should have to go into a life-altering treatment feeling unprepared, isolated, or blindsided by the reality of what’s to come.

I can’t change the guidance (or lack thereof) I received before my CAR T-cell therapy, but I can share my story in the hope that it helps someone else feel more informed and empowered. If you’re preparing for this journey, know that you are not alone, and what you’re feeling is valid.

My advice? Ask the hard questions. Seek out real stories. Find support in communities that understand. Because when you have the full picture, you can step into the experience with clarity, confidence, and the assurance that whatever emotions come your way, you are not broken—you are human.