William’s B-Cell Acute Lymphoblastic Leukemia Story

William shares his story of getting diagnosed with acute lymphoblastic leukemia (ALL) at 21 years old. He describes undergoing chemotherapy and CAR T-cell therapy twice.

William also highlights issues with navigating cancer, including the issue of fertility preservation and the support that meant most to him.

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This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.

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Diagnosis

What were your first symptoms?

The first thing I noticed that was out of the ordinary was my fingers would ache. I didn’t really understand that. I was 21 years old at the time and figured I shouldn’t be having any arthritis or anything like that.

I was in Washington, D.C., and I didn’t want to go to a doctor and get it checked out. It was something I had texted my mom about and told her it was annoying because it was hurting to write at work. It was just one of those weird things. 

I also had a really bad, swollen sore throat. It was having strep throat but way worse. It was almost swollen shut. 

I had some insane fatigue as well. I was absolutely exhausted. I would wake up for work and be ready for bed again by 10 a.m.

For some reason, I didn’t think anything of it. I was in a new city for an internship, and I thought I was just tired from all the stress. 

How did your doctor tell you about the cancer?

I remember getting told and blocking everything else out after that because it was so traumatic. They came back into the ER with the results of the tests, and he said, “You’ve been diagnosed with leukemia.”

At first I didn’t believe him.

Prior to this, I took really good care of myself. I like to think of myself as the epitome of health. I really went out of my way to make sure I prioritized my health. I was in complete disbelief, and he asked if there was someone they could call.

I called my mom, told her I thought the doctor was joking with me, and handed her the phone. 

What tests did they run at the initial ER visit?

They ran a urine and blood test. Other than that, they just swabbed my nose and throat because of the mono, but the blood tests are what ultimately revealed everything. 

How did you process the cancer diagnosis?

Disbelief from the diagnosis and the shock was huge. I was also just really tired, though. I was in and out of a drowsy state all the way to the ER. It was so weird.

Those last few days when I had been laying in bed, even with how sick I was, I was still taking care of myself. I was drinking water, trying to eat, sleeping, getting up to use the bathroom when I needed to, and using the opportunity to walk around for a minute.

I felt lucky that they caught it, but it was just so unexpected because I was so healthy before.

What ended up saving my life was probably how well I had taken care of myself before all this. 

I was really terrified. I was bedridden for about a month after I was diagnosed. I had to relearn how to walk. I was scared. At the same time, my mind has always been very strong.

Even when I was dazed, I was still talking about beating the cancer. I had no problems doing whatever the doctors and nurses needed to do to make me better.

Right after being diagnosed, I said, ‘Let’s just get this shit going.’ They wrote that quote up on my board.

The emotional side was mostly being terrified, but also the why’s and how’s. However, I quickly understood that I couldn’t change the situation and that I needed to do whatever I could to fix it. Ruminating wasn’t going to solve anything.

»MORE: Patients share how they processed a cancer diagnosis

What was the first conversation with your oncologist like?

That was a conversation between my mom and the oncologist actually. I was in the ER in Washington, D.C., and I got transferred to a hospital in Baltimore. My mom actually beat me somehow. It’s a 10-hour drive from Indiana, where we’re from, and somehow she beat me.

She started talking to the oncologist when she got there and got everything set up for me. They found out what type of leukemia I had pretty quickly. They have an incredible team at Johns Hopkins.

They set my plan up before I got there because she knew I would want to get started. She knew I would want to do whatever it took to get better.

Chemotherapy

What was your chemo regimen?

I was in the hospital for about 2 weeks when I got back home. They just wanted me close in case I needed any blood transfusions or anything like that.

I went in every Wednesday or Friday. It all depended on how much time needed to pass between each drug.

At this time, I was on vincristine, Cytoxan, and pegaspargase. I was at the hospital once or twice a week for a while.

We did lumbar punctures and bone scans every month to check my status. Those would be randomly scheduled throughout the week.

Infusions took anywhere from a simple 15 to 30 minutes to one of the drugs taking all day. That one required fluids before and after, so it took much longer.

Side effects from chemo

I was very fortunate. The main side effects I had were hair loss and neuropathy. 

»MORE: Dealing with hair loss during cancer treatment

Describe the bone marrow biopsy and lumbar puncture (spinal tap)

I’ve been very lucky. I was diagnosed with the pediatric form of leukemia, so I was allowed to be put under for the biopsies. I wasn’t allowed to when I was in Johns Hopkins, though, and I had lumbar punctures with only the loopy medicine and some local anesthetic. I was awake for those, but they numb it. After I went back to Indiana, I started getting put under for them.

Side effects of the bone marrow biopsy and spinal taps

It is a little painful, but you chuck right through it. Afterwards, you have a sore back for 2 or 3 days. I recommend planning on relaxing for 2 or 3 days and trying not to strain yourself too much.

If you just say out loud the best- and worst-case scenarios, it helps you ground yourself and realize where you are.

It’s something that every cancer patient faces. Whenever you’re going back in to get a scan and check your status, it’s anxiety-ridden.

The best way to cope is to keep a strong head and have a good mindset and believe that things will turn out the way they’re supposed to. 

»MORE: Dealing with scanxiety and waiting for results

CAR T-Cell Therapy

Leukemia in bone marrow meant a different treatment path

They ended up not doing radiation because by the time I ended my first chemo, there was still leukemia in my bone marrow. It was enough that they wanted to take a different approach.

I had 2 options: CAR T-cell therapy or a bone marrow transplant. I went with the CAR T-cell therapy.

Why did you choose the CAR T-cell therapy?

I get asked why I chose to go with that a lot. First of all, it was new. Secondly, it’s a lot less intense and toxic than the chemo and radiation I’d have to get in preparation for the bone marrow transplant.

I liked the idea of genetically modifying the cells. I liked being a small part of cancer research in a way. The main thing for me was you can do CAR-T and then bone marrow transplant, but you can’t do it the other way around. I figured we might as well give it a shot.

The CAR T-cell therapy put me in remission. I did that and some chemo in December, and I was in remission in January.

What’s the CAR T-cell therapy process like?

They have to extract the cells from your body. Then they ship them off to a lab to grow, and then you get them infused back in you at the hospital later. While you’re waiting for the cells in the lab, leukemia can still be growing in your body.

On the fifth day, you receive the cells. They’re in a small bag that’s been hanging out in liquid nitrogen for however long. They heat the cells in a liquid bath, and they hook you up to your port or PICC line or wherever you’ve been getting infusions.

It has to be a gravitational infusion, so they just drip in themselves. You just hang out.

It’s very anticlimactic for something that you’re hoping will save your life, honestly. It was a really cool experience nonetheless. 

What are the side effects from the CAR T-cell therapy?

The side effects are pretty intense. They put them in 2 categories. You either have an immuno response or a neurotoxicity response.

With the immuno response, you might end up in the ICU because you get really bad flu-like symptoms. I don’t think it’s a life-or-death thing usually, but they definitely have to take care of you. 

With the neurotoxicity, you can get seizures, forgetfulness, confusion, numbness, and things like that. It can mess with your heart. Those are the things they really look out for because those can be more serious.

I didn’t actually have either. I didn’t really have an adverse reaction. 

They put me on a lot of prophylactic medicine. Stuff for seizures, nausea, anti-fungals, antibiotics, and stuff like that. I had to stay in the hospital for about a month. They like to watch you for a while and make sure everything looks okay.

»MORE: Read more patient stories and info about CAR T-acell therapy

Relapse & Remission

When did you go into remission?

On day 30 after your infusion, they check your bone marrow. When they checked mine, I was completely clear and in remission as of January 10th. I got the 3-month checks and monthly blood checks.

I relapsed on June 28, and I’m back in remission as of August 10.

We have started the bone marrow transplant process to line me up with donors just in case it returns, but right now we’re staying positive.

How did you feel when you were told you were in remission the first time?

I was extremely relieved. I was also a little naive, though. I for sure thought it could never come back. I don’t think I could’ve done anything differently to take care of myself mentally, emotionally, physically, spiritually, or any other area.

What was the treatment plan the second time around?

The exact same CAR T-cell therapy procedure. They had an extra dose of my cells. I had no mutation in the relapse, so they were able to just use those. Repeat December/January and put it in July and August, and you have almost the exact same experience.

It’s like it was act 1, scene 2 of the same show. We’re preparing for a bone marrow transplant just in case it comes back a third time, and that’s what we’ll do next if it comes to that. 

Are you anxious about the cancer coming back again?

Definitely. I’m 1 of 2 people who have gotten a second CAR T-cell infusion at Johns Hopkins, and the data on that cohort of people is so small.

Knowing that and reading my oncologist’s face, I think we almost anticipate a bone marrow transplant in the next year, but they aren’t counting out the fact that the second infusion could completely work.

They don’t know because there’s such little data. I’m really just nervous about it because I know if it does come back, there will be a 6-month period of suffering I have to go through with the chemo, transplant, hair loss, and side effects. That would be rough to do again.

Everyone handles the hair thing a little differently, but I’m [part of] the many who wanted to control it, in a sense, and shave it off.

Advice on dealing with hair loss

If you want control over it, definitely just chop it off. If you have longer hair or are nervous about it, get a wig. Why not?

I don’t know about anyone else, but prior being a part of cancer world, I couldn’t tell the difference between real hair and a wig. You can rock a wig just as much as you can rock your own hair. It gives you an opportunity to try new hairstyles. 

Hair loss is inevitable. Face it. You’re not alone. It will grow back. Sometimes it’ll surprise you and grow back a little curly or a different color. That can add to the fun of it if you’re able to have a good perspective on it. 

Fertility preservation

With the condition that I was in, I was unable to do any kind of fertility preservation. I was on my deathbed practically, so there was no time. That was a conversation we had after coming back to Indiana and moving towards the CAR T-cell therapy.

If I was going to have a lot more chemo, like if I have to end up doing a bone marrow transplant, I’m definitely going to have to do some fertility preservation.

Right now, the doctor is confident that my reproductive organs are all working properly. He didn’t think there would be a large effect on any of that with the drugs I got and the way I responded to everything, so as of right now, I haven’t preserved. It will most likely happen if I have to get the bone marrow transplant, but luckily I’m still fertile now.

That’s something that goes amiss for some folks, so that’s an important conversation to have with your doctor. I’m someone who really wants to have a family when I get older.

Having to make decisions about that and think about it at such a young age is pretty strange. 

Surprisingly, my mom is the one who brought the topic up. At first, I didn’t really think about it. She knew I wanted to have a family later on down the road, and she brought it up to me. That was a conversation I took to the oncologist and social worker.

»MORE: Fertility preservation and cancer treatment

How do you feel now?

I just met with my therapist yesterday. I’m learning to not fortune-tell my life. I don’t know what’s going to happen in the future, and that’s okay.

I’m going back to school this fall. I got my real estate broker’s license this spring when I was in remission. I went on a date last night.

I’m still trying to live my 20s, even though I have leukemia restricting me in certain ways. That’s the best that I can do. That and continuing to take care of myself.

I try to use this as a learning experience every time it comes up, because cancer is a period in my life that will end. I just don’t know when.

How important was it for you to have a support system?

I had support and help from a lot of people. I got really lucky in that department. One thing my mom and I talked about a lot was having to go through that fight alone or without a lot of support. I felt like I had this whole family behind me. That includes not just my actual family, but family friends who are now family.

I had this group of people who surrounded me and gave me hope. They loved on me and prayed for me. Whether you’re religious or not, it doesn’t really matter to me. I’ll take any spiritual mojo I can get. I love it.

My therapist has been one of the most helpful people I’ve ever known. He’s helped me keep my head in the game.

As for life outside of cancer, I have my best friend. He’s the one that got me into real estate, and he’s been helping me continue on in my life. He and his family have been there through the whole process, and it’s just made our friendship even stronger.

My good friend I met out in Baltimore. She helped us enjoy our time as much as possible while we were there. I’ve been there so much that it’s like a second home to me now. She’s invited me into her network and introduced me to a lot of people.

She’s a little older than me, but that’s great with me because I’ve been forced to mature because of all of this. She’s been a beacon of light for my mom as well. Seeing someone help my mom out helped me out a lot. I can’t imagine being a parent in all of this, so that was a big help to us.

The “new normal” after cancer

Right now, I’m living by the mantra ‘YOLT.’ There’s YOLO, but then there’s also ‘you only live twice.’

My perspective has changed a lot. I value spending time with my family a lot more than I did previously. I don’t know why it wasn’t something I valued much, but it just wasn’t.

After I got diagnosed, that changed dramatically. I love spending time with my family. I’ve never been one to get attached to animals, but I’m the biggest sucker for my dogs now.

I’ve always had a strong mental game, so that’s been pretty consistent with some obvious ups and downs, but staying on top of that has definitely been a priority. 

My new normal is probably a lot more emotional, which I don’t think is a bad thing at all. People tend to bottle emotions up a lot. That’s where a lot of anxiety and depression comes from, I think. 

I feel a lot more wholesome. I feel more genuine. The way I see and think about things is different. The time I spend with people is far more quality.

I’m able to help a lot of people, surprisingly. It’s been kind of neat to see an impact in people’s lives. 

I’m a lot more emotionally and mentally strong, while still being vulnerable. I’m a lot more willing to accept challenges now. I’m more open to opportunities that present themselves. 

Do you have any advice for someone has just been diagnosed?

Most of the people I speak to say, ‘Wow, you really went through a lot.’ Well, yeah, I did, but at the end of the day, we have the same diagnosis.

One of the best things you can do is stay active in some way, shape, or form. I don’t care what that is. Just move. Do anything to help the chemo in your blood move around and do its job.

In addition to that, the food you eat is really important. My mom is a hippie. She’s plant-based vegan and eats whole foods. I call myself a flexitarian because after having this experience, I also see the value in eating things that you love. I have no problem with enjoying cake and ice cream.

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Acute Lymphoblastic Leukemia (ALL) Stories