After multiple relapses, Carlos Guerrero-Anderson takes a chance on an experimental treatment for his rare cancer.
Carlos Guerrero-Anderson is an executive leader and patient advocate committed to amplifying the voices of Hairy Cell Leukemia and rare disease communities. Diagnosed with a rare blood cancer at age 25, Carlos transformed his personal journey into a lifelong mission to advance equity and create inclusive spaces for patients and families. He currently serves as the Director of Multicultural Engagement & Insights at the Hairy Cell Leukemia Foundation, supporting patients through education, outreach to underrepresented communities, data analysis, program promotion, and the sharing of diverse patient stories. With over 20 years of experience in healthcare insights and data-driven communications, Carlos combines strategic expertise with a lived perspective to create and lead culturally responsive programs that strengthen trust, amplify patient voices, and deliver measurable impact across diverse communities. He is an active member of several national patient advocacy groups, and his work has been featured at national conferences, most recently at the NORD Rare Disease Summit 2025. Carlos believes that storytelling is one of the most powerful tools for breaking barriers, building trust, and ensuring that no patient has to fight alone.
Transcript
I grew up in a joyful home that fueled my determination to succeed. I had a group of friends that they were from more privileged families and background money‑wise, but it sparked ambition, not envy. I wanted to prove I could belong at any table, not through luck but through hard work and persistence.
I was this kind of person who ran for class president many times because I loved making ideas real. And I represented my country internationally, in different competitions, like Harvard National Model United Nations. And by graduation, multinational companies were already recruiting me.
I climbed quickly, regional roles, promotions, no vacations for six years. I went to the gym at 5:00 AM because it was the only time still mine.
One morning, in a quiet gym listening to the treadmill sound, I started feeling a strange pressure under my left ribs. Not sharp, but wrong. I wasn't that concerned because I used to be very, very healthy. But then, over months, I became tired, lost weight, noticed a growing hard balloon on my left side and had night sweats. But I kept pushing, that's what high achievers do.
Eventually, I couldn't deny it. So, doctors, tests, waiting rooms. At the same time, I was planning a trip to Madrid with my friends, my first real vacation in many years. After getting a phone call from my doctor to go the next day to meet with her in person, which was interesting, she asked me to go with my parents.
I go there. I went with my parents and two friends. They waited for me outside at the hospital corridor. And there in this cold ‘80s‑style room with my parents and the doctor, she goes that the results came back and she's very scared and worried about the results. I have an urgent hematologist appointment the following day.
The following day at 6:00 AM, I'm there in the specialist’s office. She finger‑pricked, go to the microscope, then ordered a bone marrow biopsy to be performed right in that moment, and I waited for the results.
When the results were ready, I was with the doctor. Then the doctor looked at me and said, “You need to start treatment now.”
My answer to that was, “I have a trip to Spain, and I'll deal with this when I'm back.”
She said, “If you don't start treatment now, you may not be alive in two weeks. Go to ER immediately. Carlos, you are dying.”
I was 25 years old. She diagnosed me with a rare blood cancer.
Fear didn't arrive with a scream. It arrived as a calculation. I was really worried about my career, my future, my reputation. And fear whispered, “If they find out, you’ll lose opportunities. They'll see you as failed.”
So I decided to keep silent and I worked through treatment in secret. I was getting emails and participating in phone call meetings with an IV, saying that I had a flu, and then that the flu turned into pneumonia.
When I recovered enough, I returned to work pretending nothing happened, and I relapsed several times and hid it each time. I used vacation days for treatment sessions. I took calls from infusion chairs.
But silence has a cost. It caused me a career in Switzerland, a major promotion, even chances for a family, a partner. The silence took more than the disease.
Eventually, I quit and decided to build my own business, not out of ambition, but survival, to manage my disease privately. Eventually, I decided to move to New York City to learn English, to improve my English and also to manage my company from New York. I was looking not just to survive but to grow.
Eventually, I relapsed. At that time, I ran out of treatment options in Latin America. So being in New York City, I met with doctors and I started an experimental target therapy that only a few people had tried. It was a therapy which consists of eight huge pink pills. And this dose, they started with the highest dose because they weren't sure about the exact dose to treat this condition.
The side effects were brutal. My skin felt on fire. One night, the pain overwhelmed me. I collapsed on the cold floor, screaming and shaking and crying. It is in that moment the most painful moment of my life.
I'm questioning everything. “Why me? Do the doctors know what they are doing? What's next? Am I going to survive?”
But then something shifted and I realized my body carried data and my pain carried knowledge. Someone in the future would suffer less because of what I endured. It's when I felt that it wasn't about me, it was about us, all of us.
That thought softened the floor beneath me, and the pain eased. I felt held on warm arms and I fell asleep in peace, not defeat.
Years later, the dose was reduced. Same results, fewer side effects. Nowadays, when patients say today that the treatment has no major side effects, I smile quietly, because I know the hidden story behind that progress. I was part of it.
I realized that silence is the most dangerous side effect of any disease. It isolates, it chains, it steals hope. Illness stripped my identity until I finally met the real me. That moment became an invitation to live a life with meaning. I shift to rare disease advocacy.
Today, I bring my full story everywhere, not as a secret but as a banner. Visibility won't cure a disease, but it cures loneliness. And when we stand together, we become a movement. Being a survivor is not the end of the sentence. It's the beginning.
My mission now is to turn pain into purpose, to unite patients and doctors, connect science and humanity, and spark conversations that save lives. I was not broken. I was being called. This is no longer just about surviving. It is about making sure no one ever has to fight alone.