How a Gastrointestinal Symptom Led to My DLBCL Diagnosis

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How a Gastrointestinal Symptom Led to My DLBCL Diagnosis from Patient Empowerment Network on Vimeo.

Charles Clawson shares how experiencing some heartburn after eating a spicy wonton led him to being diagnosed with Diffuse Large B-Cell Lymphoma (DLBCL).

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A Diffuse Large B-Cell Lymphoma Diagnosis: One Patient’s Journey

A Diffuse Large B-Cell Lymphoma Diagnosis: One Patient’s Journey 

 How Can Patients Overcome Noted Diffuse Large B-Cell Lymphoma Disparities

How Can Patients Overcome Noted Diffuse Large B-Cell Lymphoma Disparities

 Will Newer Therapies Be Curative for Diffuse Large B Cell Lymphoma Patients

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Transcript:

My name is Charles Clawson, and I was diagnosed with diffuse large B-cell lymphoma after my diagnosis with non-Hodgkin follicular lymphoma transformed into DLBCL. Strangely, my initial diagnosis came after the lone symptom of experiencing heartburn after eating a spicy wonton. After seeing a gastrointestinal doctor, my lymphoma was discovered at the same time my wife and I were asked to serve a mission in Norway.

My treatment journey began with three rounds of chemotherapy, which brought on horrible nausea. I was feeling so unwell that my oncologist ordered another scan for my lymphoma. Shockingly, my lymphoma had actually worsened during the chemotherapy, so my doctor sent me to Huntsman Cancer Institute for an emergency evaluation. They gave me a prognosis that I had three days to live, and my wife couldn’t even visit me due to COVID-19 restrictions.

Fortunately, my doctors decided to do another biopsy from a different location and then discovered that my lymphoma was actually DLBCL. I had to be fitted with a feeding tube for several months while a hole in my esophagus healed, and I had three rounds of E-POCH followed by three rounds of R-CHOP. I completed treatment in June 2021 and have been in remission ever since then. I’m so grateful that I’m here and plan to serve on an upcoming mission trip in Denver, Colorado.

Some of the things I’ve learned on my path to empowerment include:

  • Don’t be afraid to get a second opinion. It could change your diagnosis and ultimately save your life.
  • Make sure you get enough biopsies to accurately diagnose your lymphoma subtype.
  • I thank God, my incredible angel wife, and amazing medical providers at Huntsman for saving my life.

For me, these actions are key to staying on my path to empowerment.

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Un diagnóstico de linfoma difuso de células B grandes: el viaje de un paciente

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Un diagnóstico de linfoma difuso de células B grandes: el viaje de un paciente from Patient Empowerment Network on Vimeo.

Después de que los síntomas comenzaron con sudores nocturnos y dolor de estómago, a Tina se le diagnosticó linfoma difuso de células B grandes (DLBCL). Ella comparte algunas de las cosas que ha aprendido en su viaje DLBCL, que incluyen: “Tenga cuidado donde busca información sobre el cáncer” y la importancia de contarle a un círculo de seres queridos de confianza sobre su diagnóstico. Vea la historia de DLBCL de Tina.

See More from [ACT]IVATED DLBCL

Download Resource Guide

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What Promising Treatments Are Available for Diffuse Large B-Cell Lymphoma Patients

What Promising Treatments Are Available for Diffuse Large B-Cell Lymphoma Patients

 How Can Patients Overcome Noted Diffuse Large B-Cell Lymphoma Disparities

How Can Patients Overcome Noted Diffuse Large B-Cell Lymphoma Disparities

 Will Newer Therapies Be Curative for Diffuse Large B Cell Lymphoma Patients

Will Newer Therapies Be Curative for Diffuse Large B Cell Lymphoma Patients

Transcript:

Mi nombre es Tina y me diagnosticaron linfoma difuso de células B grandes a finales de los cuarenta. Por desgracia, me diagnosticaron erróneamente dos veces antes de que me hicieran suficientes pruebas para diagnosticarme de DLBCL y nunca había conocido a nadie con cáncer cuando recibí el diagnóstico.

Mis síntomas empezaron con sudores nocturnos y dolor de estómago. Pensé que mis sudores nocturnos podían ser el inicio de la perimenopausia, así que mi médico me recetó un medicamento contra el reflujo ácido para el dolor de estómago.

Luego, el dolor se trasladó a uno de mis costados, en mi cintura. El médico de urgencias me diagnosticó gases y, un par de semanas más tarde, otro médico de una clínica me volvió a diagnosticar gases. Cuando insistí en que no tenía gases, el médico simplemente lo descartó como una distensión muscular.

Un par de meses más tarde, vi a otra doctora por mis dolores y decidió hacerme un análisis de sangre que arrojó resultados preocupantes. También me hizo otras pruebas por vía rápida, incluyendo una tomografía computarizada y una biopsia. Aunque me sorprendió el diagnóstico, también me sentí aliviada de saber por fin qué me estaba pasando. También tuve la suerte de contar con una oncóloga excelente que fue la combinación perfecta de apoyo y claridad sobre el tratamiento y las perspectivas del linfoma B difuso de células grandes.

Aunque el DLBCL es un cáncer agresivo, la doctora señaló que es muy curable. Recibí seis ciclos de quimioterapia junto con epoetina alfa (Procrit) para prevenir la anemia. Desde que terminé el tratamiento, me encuentro bien y me he sometido a exploraciones periódicas que han salido bien. Me siento afortunada y me complace compartir mi experiencia con el cáncer para ayudar a otros pacientes y a sus seres queridos.

Algunas de las cosas que he aprendido en mi viaje por el linfoma B difuso de células grandes son:

  • Empodérate haciendo preguntas a sus médicos sobre las opciones de tratamiento y lo que puede esperar antes, durante y después del mismo.
  • Ten cuidado con dónde buscas información sobre el cáncer, ya que algunas fuentes pueden ser demasiado negativas sobre tus posibilidades de supervivencia. Utiliza recursos fiables como Patient Empowerment Network, The Lymphoma Research Foundation y The Leukemia & Lymphoma Society. 
  • Infórmate sobre las opciones de ensayos clínicos. Puede haber programas que te ayuden con los gastos de viaje, alojamiento y otros gastos no cubiertos.
  • No sientas que tienes que contarle a todo el mundo sobre tu cáncer. Puede contárselo sólo a aquellas personas con las que se sienta cómodo, aunque sean pocas.
  • Escucha a tu intuición y a tu cuerpo. Yo sabía que algo iba muy mal, pero los médicos me ignoraron durante meses antes del diagnóstico.

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

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A Diffuse Large B-Cell Lymphoma Diagnosis: One Patient’s Journey

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A Diffuse Large B-Cell Lymphoma Diagnosis: One Patient’s Journey from Patient Empowerment Network on Vimeo.

After symptoms began with night sweats and pain in her stomach, Tina was diagnosed with diffuse large B-cell lymphoma (DLBCL). She shares some of the things she has learned on her DLBCL journey that include:” Be careful about where you search for cancer information” and the importance of telling a trusted circle of loved ones about your diagnosis. Watch Tina’s DLBCL story.

See More from [ACT]IVATED DLBCL

Download Resource Guide

Download Resource Guide en español

Related Resources:

What Promising Treatments Are Available for Diffuse Large B-Cell Lymphoma Patients

What Promising Treatments Are Available for Diffuse Large B-Cell Lymphoma Patients

 How Can Patients Overcome Noted Diffuse Large B-Cell Lymphoma Disparities

How Can Patients Overcome Noted Diffuse Large B-Cell Lymphoma Disparities

 Will Newer Therapies Be Curative for Diffuse Large B Cell Lymphoma Patients

Will Newer Therapies Be Curative for Diffuse Large B Cell Lymphoma Patients

Transcript:

My name is Tina, and I was diagnosed in my late-40s with diffuse large B-cell lymphoma. Unfortunately, I was misdiagnosed twice before I received enough testing to be diagnosed with DLBCL and I’d never known anyone with cancer when I received my diagnosis.

My symptoms began with night sweats and pain in my stomach. I thought my night sweats could be the start of perimenopause, so my doctor prescribed an acid reflux medication for the stomach pain. 

Next, the pain moved to one of my sides at my waist. The doctor at urgent care diagnosed the pain as gas, and then a different doctor at a clinic diagnosed me with gas again a couple weeks later. When I insisted that I wasn’t experiencing gas, the doctor simply dismissed it as a muscle strain.

A couple months later, I saw another doctor about my pain, and she decided to run a blood test that came back with concerning results. She also fast-tracked some other tests for me including CT scans and then a biopsy. Even though I was shocked with my diagnosis, I also felt relieved to finally know what was wrong. I was also fortunate to get an excellent oncologist who was the perfect combination of supportiveness while also being clear about my diffuse large B-cell lymphoma treatment and outlook. 

Even though DLBCL is an aggressive cancer, she pointed out that DLBCL is highly curable. I received six rounds of chemo along with epoetin alpha (Procrit) that prevented anemia. Since I finished treatment, I’ve been feeling good and have received regular scans that have all been clear. I feel fortunate and am happy to share my cancer journey to help other patients and their loved ones.

Some of the things I’ve learned on my diffuse large B-cell lymphoma journey include:

  • Empower yourself by asking your doctors questions about treatment options and what to expect before, during, and after treatment.
  • Be careful about where you search for cancer information, since some sources may be overly negative about your chance of survival. Use credible sources like Patient Empowerment Network, The Lymphoma Research Foundation and The Leukemia & Lymphoma Society. 
  • Learn about clinical trial options. There may be programs that will help you with travel, lodging, and other uncovered expenses.
  • Don’t feel like you need to tell everyone about your cancer. You can tell only those you feel comfortable sharing with even if that’s only a small number of people.
  • Listen to your intuition and body. I knew something was seriously wrong but was dismissed by my doctors for months before my diagnosis.

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

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