Staying [ACT]IVATED: My Journey with Myelofibrosis and the Power of Proactive Care

As an avid climber who made healthy choices, Jason never envisioned he would be diagnosed with myelofibrosis (MF). Watch as he shares his path to diagnosis, challenges with finding a good fit for an MF specialist, and advice for optimal care. 

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Transcript:

Being informed and proactive is crucial in managing myelofibrosis, a relatively unknown blood cancer. My name is Jason, and I was diagnosed with myelofibrosis at age 46. Being an avid climber and overall a healthy person, the news came as a huge shock. Now, with my experience, I want to share my story to help others who might be experiencing unusual symptoms, just as I did. My desire is to raise awareness and to stress the importance of early detection, ultimately aiming to improve outcomes for all those affected by myelofibrosis.

Even though I didn’t realize it at the time, my myelofibrosis symptoms began with fatigue and abdominal pain. I dismissed the symptoms and didn’t see my doctor until I noticed that my skin had become strangely itchy. My doctor ran a full blood panel and referred me to an academic cancer center. I was fortunate that I lived in the same city, but it made me think about what would have happened if I lived in a rural area. I received further testing followed by my diagnosis of myelofibrosis.

I was referred to a doctor who specializes in treating myeloproliferative neoplasms (MPNs). I met with the doctor but wasn’t sure that she was going to be the best fit for me. I’m a naturally curious person, and she didn’t seem open to answering a lot of my questions. After connecting with some other myelofibrosis patients in an online support group, I decided to meet with another specialist to see if I could find a better match for my care. I was fortunate to find a good match with the next MPN specialist. I’ve been under his care since, which started with active surveillance followed by an autologous stem cell transplant. My transplant was incredibly challenging, but my myelofibrosis support group was always there for me with words of support and taking action to support both my wife and me during my treatment journey.

Following my experience with myelofibrosis, I’ve become dedicated to educating others about its unique symptoms to raise awareness of this type of blood cancer. Like me, you can empower yourself by connecting with patient advocates and support groups that can assist you in navigating your healthcare journey.

Stay [ACT]IVATED in your myelofibrosis care with these tips:

  • Ask your care team questions to learn about the status of your treatment options, and what to expect during and after treatment.
  • Join a patient support group to offer and to receive emotional support. This was a saving grace for me and my family.

These actions for me were key to staying [ACT]IVATED in my myelofibrosis care.


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La historia de Yolanda: mi camino hacia un diagnóstico de neoplasia mieloproliferativa

La historia de Yolanda: mi camino hacia un diagnóstico de neoplasia mieloproliferativa from Patient Empowerment Network on Vimeo.

Yolanda, paciente latina con trombocitemia esencial (TE), tenía muchos síntomas antes de recibir su diagnóstico final. Observe cómo comparte los síntomas que experimentó, su largo camino hasta el diagnóstico y las lecciones aprendidas sobre el empoderamiento del paciente.

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Transcript:

Mi nombre es Yolanda y a mediados de los 40 me diagnosticaron trombocitemia esencial (ET), una neoplasia mieloproliferativa. Soy una mujer latina, y mi camino hasta el diagnóstico llevó mucho tiempo.

Recordando mi experiencia, mis síntomas empezaron con fuertes dolores de cabeza y mareos que me impedían terminar mi trabajo. También experimenté una fatiga debilitante que me mantenía en cama durante un día o me hacía sentir como si mi visión y mi pensamiento estuvieran nublados. Todo era muy extraño y fui al médico, que me recetó antibióticos para una infección. Más tarde sentí entumecimiento y hormigueo en las manos y los pies, y luego dolor en el abdomen. Finalmente, mi médico decidió hacerme análisis de sangre completos para ver qué niveles podían ser anormales, a lo que siguió una biopsia de médula ósea para investigar más a fondo.

Cuando finalmente recibí el diagnóstico de trombocitemia esencial, sentí cierto alivio, pero también una sensación de hundimiento y temor ante lo que podría esperarme. Creo que uno de los problemas a la hora de recibir el diagnóstico puede haber sido que parecía saludable. Tal vez mi médico habría pedido los análisis de sangre antes si no tuviera buen aspecto. Pero intento mirar hacia delante y no hacia atrás.

Me recomendaron un especialista en MPN, que inicialmente me recetó una dosis baja de aspirina. Luego me recetó hidroxiurea (Hydrea). Me ha ido bien y me siento agradecida por tener opciones de tratamiento. Pero si mi enfermedad avanza hasta un punto en el que necesite otras opciones, ya he decidido que consideraré participar en un ensayo clínico. Creo que he sido relativamente afortunada y quiero compartir mi historia sobre el cáncer para ayudar a otras personas.

Algunas de las cosas que he aprendido en mi camino hacia MPN son:

  • Empodérate haciendo preguntas a sus médicos sobre su MPN y sobre lo que puede esperar antes, durante y después del tratamiento.
  • Infórmese sobre las opciones de ensayos clínicos. Puede haber programas que le ayuden con los gastos de viaje, alojamiento y otros gastos no cubiertos. Y los ensayos clínicos pueden ofrecer una opción para su MPN si ya ha utilizado todas las demás opciones.
  • Tú eres la persona responsable de tu salud. Si cree que algo va mal en su cuerpo, defiéndase. Pida que le hagan más pruebas para averiguar qué le pasa.
  • Tenga cuidado con dónde busca información sobre el cáncer. Utiliza fuentes creíbles como MPN Research Foundation, The Leukemia & Lymphoma Society y Patient Empowerment Network.

Estas acciones fueron clave para mantenerme en mi camino hacia el empoderamiento.


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Yolanda’s Story: My Path to a Myeloproliferative Neoplasm Diagnosis

Yolanda’s Story: My Path to a Myeloproliferative Neoplasm Diagnosis from Patient Empowerment Network on Vimeo.

Latina essential thrombocythemia (ET) patient Yolanda had many symptoms before receiving her ultimate diagnosis. Watch as she shares the symptoms she experienced, her long path to diagnosis, and her lessons learned about patient empowerment.

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La historia de Yolanda: mi camino hacia un diagnóstico de neoplasia mieloproliferativa

Are There Disparities in Stem Cell Transplant Outcomes

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Transcript:

My name is Yolanda, and I was diagnosed in my mid-40s with essential thrombocythemia (ET), a myeloproliferative neoplasm. I’m a Latina woman, and my path to diagnosis took an extended time.

Thinking back on my journey, my symptoms began with severe headaches and dizziness that made it too difficult to finish my work. I also experienced debilitating fatigue that would either keep me in bed for a day, or I’d feel like my vision and thinking were in a fog. It all felt very strange, and I saw my doctor about the symptoms, but he prescribed antibiotics for an infection. Then later I felt numbness and tingling in my hands and feet and then pain in my abdomen. Finally, my doctor decided to run full blood work to see which levels might be abnormal, and that was followed with a bone marrow biopsy to further investigate.

When I finally received my diagnosis with essential thrombocythemia, I felt some relief but also a sinking feeling and dread of what might be ahead for me. I feel like one issue with getting diagnosed may have been that I looked healthy. Maybe my doctor would have ordered the blood work sooner if I didn’t look well. But I try to look forward rather than back. An MPN specialist was recommended to me, and he initially put me on low-dose aspirin.

Then I was prescribed hydroxyurea (Hydrea). I’ve been doing well and feel grateful to have treatment options. But if my disease progresses to a point where I need other options, I’ve already decided that I’ll consider participating in a clinical trial. I feel like I’ve been relatively lucky and want to share my cancer story to help others.

Some of the things I’ve learned on my MPN journey include:

  • Empower yourself by asking your doctors questions about your MPN and what to expect before, during, and after treatment.
  • Learn about clinical trial options. There may be programs that will help you with travel, lodging, and other uncovered expenses. And clinical trials may provide an option for your MPN if you’ve already used all other options.
  • You are the person in charge of your health. If you feel like something is wrong in your body, advocate for yourself. Ask for more testing to find out what is wrong.
  • Be careful about where you look for cancer information. Use credible sources like MPN Research Foundation, The Leukemia & Lymphoma Society, and Patient Empowerment Network.

These actions were key for staying on my path to empowerment.


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