Ciara’s Acute Lymphoblastic Leukemia Story

Ciara was diagnosed with acute lymphoblastic leukemia (ALL) at 24 years old after experiencing symptoms like fatigue and night sweats. She describes undergoing chemo, taking monoclonal antibody drug blinatumomab, and experiencing side effects.

Ciara shares how she navigated life with cancer, including what got her through the hardest times, managing the issue of fertility preservation, and how the leukemia diagnosis changed her life perspective (for the better!). Thank you for sharing your story, Ciara!

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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?

Hindsight is 20/20, I guess, because for about a month I was having all kinds of weird side effects. I didn’t realize it was all connected until I got the diagnosis. 

I was very fatigued. I could sleep for 8 hours, wake up, and feel like I could sleep for 8 more. At the time, my husband and I were on the third floor of our apartment complex.

I was short of breath walking up to our apartment, and I was like, “Okay, I need to go back to the gym. I should not be this winded.” 

He said, ‘You don’t know me, but as soon as you left last night, your doctor called me to consult.

After preliminary results came back, we think you have leukemia. You need to get to an emergency room.’

Processing a cancer diagnosis

I was just standing there doing dishes when he called. I was like, “Uh, what?” You never expect that you’re going to hear “cancer.” 

We’d been living in Austin for about 9 months. I had so many questions because I didn’t know what hospital to go to, I didn’t know what to say when I got there, and I didn’t know if he was going to tell them I was coming. 

He impressed upon me the seriousness of the situation. He said, ‘I need you to know this is serious. I don’t want to wait a few days. I need you to go right now.’

That freaked me out a bit, but it was good that he let me know it was serious.

»MORE: Patients share how they processed a cancer diagnosis

They drill into your hip bone, stick a needle in, and they pull the marrow out. That doesn’t feel good. That’s a deep ache inside your bone. There’s nothing really for that, but it’s over in 15 minutes.

Chemotherapy Treatment

What was it like having a PICC line?

I wanted a port, but there’s a greater risk of infection with leukemia, so I needed a PICC line.

Blincyto drug (monoclonal antibody)

Then I started 5 rounds of Blincyto. That’s the fanny pack I had to wear and go get bag changes for every other day. Blincyto is typically used for relapsed patients, but my doctor felt like I had a greater chance of staying in remission if we did that since I was a pretty unconventional patient.

I did Blincyto 4 weeks on, 2 weeks off. It’s a continuous infusion for those 4 weeks.

Blincyto side effects

I had some super random side effects that would come and go. I didn’t see a rhyme or reason to them. I had fatigue, like most people do. I got moon face from the dexamethasone (steroid). There was some major swelling going on. 

I had really bad bone pain during the winter. My doctor said it was probably a result of rituximab. It caused bone pain and muscle weakness.

I would be walking, and then all of a sudden I would be on the ground. I didn’t have very bad nausea, which was nice. I have more of that now on maintenance. 

I’ve had a really bad chemo cough. That’s from the methotrexate I’m on now for maintenance. On the steroid, I get bad mood swings. I know it’s happening, and I can’t control it. 

I never lost everything, but I did have a lot of hair loss. It was enough that I ended up shaving it super short. It was easier to manage that way, and it was less traumatic. 

I’ve been very warm while going through chemo. Because of my meds and because I’ve been on the Depo shot, I had some night sweats.

»MORE: Cancer patients share their treatment side effects

What’s your maintenance chemo like?

I’ve been going down to Houston once a month. I get blood work done, and I see my doctor.

I get IV chemo. After I finished the other 2 phases, I got my PICC line taken out. Since it’s just once-a-month chemo, I don’t need a port or PICC line anymore. 

I get vincristine at my MD Anderson visit. I take mercaptopurine daily, methotrexate once a week, and the first five days of the month I take mass quantities of Prednisone. 

About two months ago, they stopped my Vincristine. I was having some pain in my feet and hands, so we stopped.

Reflections and Quality of Life

What was the hardest part of treatment for you?

When I was having bad bone pain. It was Christmas week of 2017, so it was in the thick of my chemo. There was nothing I could do or take that would give me any sort of relief. I was in excruciating pain on the couch.

I couldn’t walk, hold a glass of water, or crack an egg. I was trying to be self-sufficient and make myself breakfast, and I couldn’t. 

I tried Epsom salt bath, massages, medications that were prescribed, and nothing helped. That was the worst of it.

What were some practical ways that people supported you?

We have a tendency to say, “Let me know if there’s anything I can do to help.” The majority of people are not going to actually let you know. It’s hard to ask. 

Instead say, ‘Hey, I want to bring dinner over for you. What day works for you?’

That’s so much better. To specifically mention things that you are willing to do is so much better. I’ve very open about my appointments. I’m not one to be hush-hush about things because I know I need help.

»MORE:  What kind of support cancer patients say helped the most

Was there a talk about fertility preservation?

Everything happened so quickly. From the time that I got the blood work, it took a week to start chemo. After they put my PICC line in, there was a conversation about it, but there wasn’t any time to do anything about it. 

There wasn’t time to even think or talk about. That wasn’t really even an option for us. I don’t know if that’s the case for everyone, but it was for us. 

I was and still am really angry because that was taken away from us. It’s potentially forever, but at least for many years. That decision was made for us, and that’s frustrating beyond belief. 

It stresses my husband out when we talk about it because he wonders what would happen if we did wind up having a kid, then my cancer comes back, and he’s left with a kid by himself. 

We’re always carrying the beast of relapse in our minds, so it’s a hard topic to think about either way.

»MORE: Fertility preservation and cancer treatment

How do you handle the anxiety of potential relapse?

Right now, I don’t. I’m still going through chemo, so I feel like when I finish, it’s going to be a big deal. On one hand, I’m so excited to not have to go get maintenance chemo once a month anymore, but I also know that there’s going to be so much more emotional work to get done after I finish. 

I’m going to have to deal with the idea of relapse. At that point, I have to figure out what my life will be like again. For the past few years, my life has been cancer treatment. I know how to do that.

When I stop, everything will change. I’m no longer actively fighting the cancer at that point, and I just have to have faith that it worked and it worked long-term.

Advice for someone who has just been diagnosed

With ALL, it’s going to be a long journey, but don’t put your life on hold. It will be hard and take up a lot of your time and energy, but don’t stop traveling, eating the foods you like, or spending time with the people you love. 

Don’t stop living your life and say, ‘I can’t wait for this to be over.’ Don’t shut your life down while you wait for this experience to end. Continue to do things you love. 

Is your energy level different? Sure. You might not be able to do everything you loved the way you could before you got sick, but you can still do them. Rest when you need to, but keep living.

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Acute Lymphoblastic Leukemia (ALL) Stories