Luisa’s Acute Myeloid Leukemia with FLT3 Mutation Story

Luisa shares how she was diagnosed with acute myeloid leukemia (AML), FLT3 mutation, after experiencing fatigue and headaches. In her story, she details undergoing chemotherapy, total body radiation, and a stem cell transplant.

She also highlights how she navigated cancer, including finding a cancer community, how the diagnosis impacted her relationships like her marriage, and the importance of caring for a caregiver. Thank you for sharing your story, Luisa!

• Name: Luisa L.
• Diagnosis:
  • Acute myeloid leukemia (AML)
  • FLT3 mutation
• Staging: N/A
• 1st Symptoms:
  • Infected bug bites
  • Fatigue
  • Migraines
• Treatment:
  • Chemotherapy
    • 3 rounds
  • Radiation
    • Total body radiation, 11 doses
  • Stem cell transplant

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

Reach out if you need someone to talk to. My inbox is always open. You just have to get through it. Use every resource you can find that’s available to you.

Reading other people’s stories can help you connect with other survivors. That can be helpful. Seeing other people survive gives you hope through the really hard stuff.

Luisa L.

Diagnosis

What were your first symptoms?

I was working at a summer camp. Just like every other year, I was covered in mosquito bites. I had 2 that I thought were spider bites because they were raised bumps and tender to the touch. I figured I was alive, so I wouldn’t worry about it because they didn’t seem poisonous. 

I was also working 14-hour days, so I thought I was just tired because of that. I was also having acne all over my skin. I was having migraines, though. 

Then, a few days later, what I thought were spider bites grew into 2 large, raised discs on each leg. I went to the doctor, and she thought they were super weird, but she’d seen a lot of weird bug bites that year. She gave me an antibiotic and told me that I should go to the ER if they didn’t get better in a few days after some antibiotics. 

A few days later, they were dark, pus-filled discs, and I could hardly walk. I also felt like I had the worst flu ever. My husband took me to the ER, and they did blood work.

What happened at the ER?

A while later the doctor walked in and said, ‘You’re going to start hearing the word “cancer.”’

I was like, ‘No, no, no. I’m an organic, healthy-eating vegetarian. I exercise and meditate. I do not have cancer!’

Looking back, in the months leading up to all this, I had been super fatigued. I had developed an allergy to cats and dogs that I had never had before. I had acne. I thought it was all just hormonal and part of turning 30.

How did you process the cancer diagnosis?

Total disbelief. I thought it was impossible. I had been a vegetarian for almost 10 years. I exercised regularly. I meditated. I ate organic and healthy food.

I never smoked. I rarely drank. I was the opposite of what you would think of when you think of someone who gets cancer. I was in total denial. 

The oncologist told me I needed to start treatment right away, and my first thought was, “Chemo is toxic. I don’t want that in my body.” My first question was, “What happens if I don’t want chemo?”

The oncologist looked at me and said, “You’ll be dead in a month.” When she said that, I was like, “Okay, I guess I’m starting chemo.”

»MORE: Read different experiences of a cancer diagnosis and treatment

How did you break the news to your loved ones?

My husband was back at summer camp working. I had told him to go back because I thought I was fine, but then I found out the diagnosis. His family happened to be in New York, so they came up to the hospital to be with me. 

I was so doped up on morphine that I don’t know who told him. I’m sure it was his parents, but I don’t know. I certainly don’t remember having that conversation with him. 

My family are all in Australia, so with the time difference, it was the middle of the night there when I was diagnosed. I had to wait. There are some emails, so I guess I told some people that way. 

We didn’t announce it publicly, though, because I was working at camp. I didn’t want my kids to know.

It was weird. Some people could know, and others couldn’t. We didn’t want it out publicly yet.

»MORE: Breaking the news of a diagnosis to loved ones

Chemotherapy

How soon did you have to start chemotherapy?

I went into the hospital on the 22nd, and I was diagnosed on the 23rd. I was transferred to Danbury Hospital and started chemotherapy either that night or the next morning. 

There’s about 2 weeks after starting treatment that I have no memory of. There’s a lovely nurse at the hospital who was helping me try to get up and walk near the end of my treatment.

I said to her, ‘I wish you had been here the whole time. You’re so lovely.’

She said, ‘Sweetheart, I’ve been here the whole time.’

Turns out she was the one who had explained the side effects of chemo to me. I just had no recollection because I had been so sick.

»MORE: Cancer patients share their treatment side effects

Transferring hospitals

I was diagnosed at New Milford Hospital. Then they transferred me to Danbury for treatment. When I didn’t go into remission after the first round of chemo, someone pulled some strings and got me transferred to Memorial Sloan Kettering Cancer Center.

They monitored me for a week, rather than start anything right away. My counts improved enough that they decided I was in remission. I went home without a port after that week.

I was still going in to have blood work done, but I had a few weeks break from all treatment, and then I went back in to have my port put in and got the second phase of chemo. That was infused at home through a pump. I had a fanny pack full of chemo.

What side effects did you experience from chemo?

Almost immediately, my hair started falling out. I do remember asking about that, and I was nervous about that.

Friends from camp came and shaved my hair. There’s pictures of that. I look conscious, but I have zero memory of it. I loved being bald. It was so much fun for me. I lost my eyelashes and everything. 

Everything tasted like poison. I had nausea and fatigue. I had thrush in my mouth at one point. I had awful migraines. I also had some dry mouth.

»MORE: Dealing with hair loss during cancer treatment

Did you experience mental or emotional side effects from chemo?

I was such a mess. I was angry and depressed and anxious. I was completely miserable. I kept asking, “Why is this happening to me? Am I being punished for doing everything right?” It was blood cancer of all things. I wondered how that happened. That’s still an ongoing thing.

What are the lasting effects from chemo?

Even 5 years later, there’s still stuff that goes on. I’m healthy, and I’m running marathons now, but just the other day I had to have 8 fillings. I’ve never had to have dental work done before. That’s because of the chemo. 

I’m also in early onset menopause because of treatment, so that comes with its own joys. I have to worry about bone density. I was osteopenic, but I’m pretty certain I reversed that.

I was 5’5” when I started treatment, went down to 5’3”, and now I’m pretty much back to 5’5” again.

Transplant

You had chemo and radiation before the transplant

I had to do chemo and radiation before the transplant. The second round of chemo was rough because I had to shower twice a day.

One of the drugs can turn white skin to a brownish-orange color. Showering was a whole thing because they had to cover the port, and I had to shower with an IV next to me. Plus, I was just so tired, and I had to scrub twice a day. It was rough. 

Radiation was total body radiation. I was anxious about it. They had given me the little tattoos. Every procedure is anxiety-inducing. They had to give me Ativan to calm me down. 

There were so many tests beforehand, too. I was constantly being poked and prodded. I had breathing tests, bone density tests, you name it.

I had a panic attack during the first radiation treatment and fainted. After that, they were so sweet.

They played show tunes for me so that I would have something to sing along to during the treatment. 

What were the side effects from radiation?

I had nausea and fatigue from the radiation. The anxiety and depression were really bad at that time, too. The fear of going through the whole thing was hard.

It made me think, “Why bother?” It made me wonder why I had been living so consciously if I was going to get blood cancer anyway.

»MORE: Read other patient experiences with radiation therapy

What was the transplant process like?

When I first got diagnosed, my sister got tested. She was my donor.

She was given medication to boost her cell production. I think she was admitted as a day patient to Memorial Sloan Kettering, and they took her cells by drawing blood. It took several hours.

My whole family was in the room for the transplant. The nurses brought in this giant syringe, and they were like, “These are the cells!” It looked like a novelty syringe. It was so big! The nurses hooked it up to the IV, and that was honestly the easiest part of the whole thing. It was so crazy. The science is so cool. 

I was in hospital for about a month in total for the transplant, and then I went home. My counts kept dropping after the transplant. I needed to have blood and platelets, but they eventually came up. 

Recovery from the transplant

I had chronic fatigue, nausea, anxiety, and migraines. My fingernails fell off one by one. There was a time when my husband had to dress me because I couldn’t use my hands. 

I had hand-foot syndrome, where you get sores on the bottoms of your feet. I couldn’t walk. I had thrush in my mouth again. So much nausea. My counts were crazy. They were all over the place for so long. I was immunosuppressed for a longer period than is expected. 

I didn’t stop being symptomatic for about 6 to 8 months after I came home from the hospital. That first year was brutal. It was never-ending blood work. Every sniffle would send me into a panic. I thought I was relapsing all the time.

How did you handle the anxiety of leaving the hospital?

A lot of Ativan. I had an amazing supply of anti-anxiety drugs.

I had a psychiatrist that the hospital put me in touch with for a while. It was hard to find a good therapist.

My husband was amazing. I would literally not be here if it weren’t for him. We had an amazing support network of people. 

CancerCare has great young adult cancer support groups. That was a really big turning point for me to go to the support group. That was amazing for me psychologically. 

Reflections

Do you still struggle with anxiety about your health?

Every medical appointment, whether follow-up related or otherwise, is absolutely frightening. Part of that is the American health care system. We had to switch insurances, so now I can’t go to MSKCC anymore. 

Finding providers that know how to deal with a cancer survivor is so exhausting. The financial side is also so anxiety-inducing. The insurance covers some, but even blood tests cost so much money. Sometimes, it makes me think, “Okay, well, I just won’t get follow-up care anymore.” 

Even to this day, if someone touches me with a needle, I get flashbacks. It’s a whole thing. I’m very anxiety-ridden because of the experience.

What’s your advice for other patients on how to deal with medical costs?

Use every financial help program that’s available. CancerCare, the Leukemia and Lymphoma Society, and Imerman Angels were all very helpful to me. Every cancer has its own specific body or foundation of some kind. There are so many resources out there.

Also, talk to other people who have been through what you’ve been through. They might know of a program, or their nurses might know of one that could help you. Expand your options.

How did finding a cancer community help you?

Knowing that what I was going through was normal was so helpful. That let me know that it was possible to get to a time where you don’t have to think about cancer every day. Better days do exist. It gets so much easier, and life goes on. 

Being around other people and having the support of a shared experience is incredible. Everybody’s cancer is different, but it’s so nice to be around people who understand. For me, finding other women who were going through menopause at 30 was comforting.

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

How did your cancer affect your relationship with your husband?

It’s been a huge challenge. I got sick 9 months after we got married. We had dealt with immigration before we got married.

We had been through this huge ordeal to get me my visa, and we thought if we could get through that, we could get through anything. 

He was so unwavering and present and patient during the whole thing.

He treated me like I was the most beautiful person in the whole world, even when I was bald and throwing up. He was just there through it all. 

Even still, it takes a huge toll on the relationship. I lost my libido for a couple of years because of the menopause. Psychologically, because of treatment, I just didn’t want my body to be touched. Even with the kindest, most loving person, it was difficult. That can really put a strain on your relationship. 

He took care of the cooking and cleaning and everything financially because I was just too sick and couldn’t do it. Now we’re rediscovering what it is to be together after cancer and how to be together now that we’re not in the patient-and-caregiver dynamic. 

I felt very robbed because I lost 2 to 3 years of my life to being sick. I always feel like I’m playing catch up. There are so many activities and goals now. My husband is just like, “I just want to be a couple again,” and I’m like, “I don’t have time! I have so many things to do!” 

He has been so amazing and patient. I am so lucky to have him. He’s a good one.

»MORE: 3 Things To Remember If Your Spouse Is Diagnosed With Cancer

What is your “new normal” after cancer?

I’m super impatient. I want everything done yesterday. I’m less okay with tolerating bullshit. Whereas before treatment, I would’ve been very nice while talking to insurance providers, now I’m very impatient. I’m just like, “Nope. Fix it.” I have the sense that there’s no time. I could get sick again tomorrow. Anything could happen. 

Having said that, I don’t feel that way all day every day. There are just so many things I want to be doing. I’m an actor. We moved to New York, so I was hoping to be auditioning and all that, but cancer really put a dampener on that. Getting back into it has been really joyful but also really hard. 

My body is different now. It can’t do the things that I could do before. I lost an octave in my singing voice.

I sing in a chorus. It’s so much fun, but I’m still figuring out my new singing voice and what it can do. It’s like this ongoing rediscovery of what I’m capable of.

What are some practical ways people helped you?

Having people I could rely on that weren’t my husband was really important. For emotional support, and for practical things like getting to appointments, cooking, and cleaning. We had one group of friends who would come over and cook us dinner.

We had a meal service that delivered frozen meals: God’s Love We Deliver. That was a huge help. They gave Aaron meals, too, so he didn’t have to cook. That was so nice. 

One of our uncles drove me to a lot of appointments. He’s retired, so he could do it. He was amazing. He would say, “Tell me when to pick you up,” and then he would sit at the hospital for hours and take me home when I was done. 

The importance of caring for the caregiver

Something I think that’s neglected often is support for the caregiver. We arranged for my husband, Aaron, to have a weekend away with his dad so that Aaron could have some time where he didn’t have to take care of me. Someone could take care of him.

Having support for your caregiver is important, too. 

What was your 5-year cancer-versary like?

This was the first year I felt joyful on the anniversary. Past anniversaries have made me want to hide away and made me sad. This year, I was like, “Oh my god, I made it to the magical number 5.” That was a great feeling. I’ll be running my fifth marathon this year on the transplant anniversary, which is amazing. 

I set myself the crazy goal of running 3 marathons this year so that I could run my fifth marathon on the fifth anniversary of my transplant.

It’ll also be my third New York City marathon. I watched the race from my hospital window and couldn’t imagine being well enough to even consider running again. Being able to run NYC for the third time feels incredible.

Advice for someone who has just been diagnosed

Reach out if you need someone to talk to. My inbox is always open. You just have to get through it. Use every resource you can find that’s available to you. 

Reading other people’s stories can help you connect with other survivors. That can be helpful. Seeing other people survive gives you hope through the really hard stuff.

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