<div>Hola! Mi nombre es Barbara, me encuentro ante una enfermedad considerada rara, agresiva, y de tratamientos complejos. El Hepatocarcinoma Fibrolamelar.
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<div>Soy madre de dos pequeños niños y emprendedora. Amo la naturaleza, el arte, la literatura, la música. Nadar en el mar, los atardeceres, conversaciones profundas y largas, y la vida.
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<div>En febrero, tras reintegrarme a mi entrenamiento de natación me despertó por la noche un dolor en el abdomen de lado derecho. Durante unos días fue intermitente, volviéndose intenso al tercero.
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<div>Fui a urgencias, me mandaron un ultrasonido. Ahí apareció un tumor de aprox. 8 cms en mi hígado, en el segmento VIII, justo en el centro. Acudí al hospital general (sector de salud pública) donde me internaron ya que el dolor era insoportable. Tras una tomografía me dieron de alta y a las 2 semanas me realizaron una biopsia. El resultado llegó 6 semanas después: hepatocarcinoma fibrolamelar. Mediante un Pet Ct se descartó metástasis.
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<div>Este tipo de cáncer es muy poco frecuente, agresivo y difícil de tratar. Se presenta en jóvenes con hígado sano. 1 persona en cada 5 millones lo padecerán. No fui candidata a cirugía para extirpar el tumor ya que es grande y resultaría en la pérdida del 80% o más del hígado por su compleja localización.
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<div>En México hay poca información y tratamientos para este tipo especifico de cáncer. No existen programas o investigaciones al respecto, mucho menos ensayos clínicos que brinden una cura a esta enfermedad.
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<div>En oncología clínica me indicaron Lenvatinib, medicamento inmunosupresor con el que no cuenta el hospital Gral. desde hace un año. Consultando otras opiniones médicas un tratamiento con mejor pronóstico serían embolizaciones para reducir de tamaño el tumor, luego una ablación para quemarlo, y finalmente operar para sacarlo. Aunque este cáncer es reincidente, por lo que recomiendan luego de estos procesos un transplante de hígado como opción a largo plazo.
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<div>Dichos procedimientos son demasiado costosos. Sin mencionar que quizá se requieran ciclos de quimioterapia o inmunosupresores. Tanto las embolizaciones, como cirugías y trasplante son algo que no puedo costear. No cuento con seguro de gastos médicos. El pequeño negocio con el cual he sacado adelante a mis hijos de 10 y 5 años lo he tenido que poner en pausa. El dolor y cansancio son constantes. Incluso hay veces que comer es todo un reto por el malestar que me genera.
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<div>Mis agravantes son hipotiroidismo diagnosticado desde hace 15 años y mi tipo sanguíneo poco común (A rh negativo).
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<div>Estoy dispuesta a enfrentar todas las batallas que esta lucha me ponga de frente. Mis hijos aún son pequeños y necesitan a su mamá como soporte de fortaleza, protección y amor.
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<div>Además, ellos también necesitan consultas médicas con especialistas y terapias por hipotiroidismo, TDAH y TEA.
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<div>Cada día ganado, cada mes que pueda seguir viviendo a su lado representan una victoria para mis hijos, mi familia y para mí. Darme por vencida nunca ha sido una opción.
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<div>Agradezco tu apoyo y cualquier aporte es bienvenido y suma en esta causa y camino aunque largo, lleno de enseñanzas y personas que sacan la mejor versión de uno.
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<div>Sino puedes donar, puedes apoyar compartiendo mi caso para que llegue a más personas, o dejando unas palabras de aliento. Te estaré agradecida de igual manera.
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<div>Hello! My name is Barbara Alejandra. I am facing a disease considered rare, aggressive, and requiring complex treatment.
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<div>I am a mother of two young boys and an entrepreneur. I love nature, art, literature, music, swimming in the ocean, sunsets, deep and long conversations, and life.
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<div>In February, after returning to my swimming training, I woke up at night with pain in my right abdomen. It intermittent for a few days, becoming intense on the third day.
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<div>I went to the emergency room, where they sent me for an ultrasound. It revealed a tumor measuring approximately 8 cm in my liver, in segment VIII, right in the center. I went to the general hospital, where they admitted me because the pain was unbearable. After a CT scan, I was discharged, and two weeks later, they performed a biopsy. The result came back six weeks later: fibrolamellar hepatocarcinoma. A PET scan ruled out metastasis.
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<div>This type of cancer is very rare, aggressive, and difficult to treat. It occurs in young people with healthy livers. One in every 5 million people will suffer from it. I was not a candidate for surgery to remove the tumor because it is large and would result in the loss of 80% or more of the liver due to its complex location.
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<div>In Mexico, there is little information or treatment for this specific type of cancer. There are no programs or research on the subject, much less clinical trials that provide a cure for this disease.
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<div>In clinical oncology, I was prescribed lenvatinib, an immunosuppressive drug that the General Hospital (Public sector) has not had for a year. After consulting other medical opinions, a treatment with a better prognosis would be embolizations to reduce the tumor's size, then an ablation to burn it, and finally surgery to remove it. Although this cancer is recurrent, they recommend a liver transplant as a long-term option after these procedures.
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<div>These procedures are extremely expensive. Not to mention that cycles of chemotherapy or immunosuppressants may be required. Embolizations, surgeries, and transplants are all things I can't afford. I don't have health insurance. I've had to put the small business I've been supporting my 10- and 5-year-old children through on hold. The pain and fatigue are constant. Even eating is a challenge at times due to the discomfort it causes me.
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<div>My aggravating factors are hypothyroidism, which I was diagnosed with 15 years ago, and my rare blood type (A rh negative).
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<div>I'm willing to face all the battles this struggle throws at me. My children are still young and need their mother for strength, protection, and love.
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<div>In addition, they also need medical consultations with specialists and therapies for hypothyroidism, ADHD, and ASD.
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<div>Every day gained, every month that I can continue living by their side represents a victory for my children, my family, and me. Giving up has never been an option.
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<div>I appreciate your support, and any contribution is welcome and contributes to this cause and journey, although long, filled with lessons and people who bring out the best in us.
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<div>If you can't donate, you can share my story so it reaches more people, or leave a few words of encouragement. I would be grateful all the same.
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Angel Molina

Anonymous

Carlos Pons

Joaquin Ledesma Nova

JORGE Marumoto torres

Elisa Vargas

Sandra Velázquez

Olga Georgina De la Vega Aguirre

Adolfo Fuentes

ROSALIA VELAZQUEZ

MARIA JOSE VELAZQUEZ GONZALEZ

Monica Elizalde

Sandra Rodriguez

Juntos con Barbara contra el Hepatocarcinoma Fibrolamelar

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