Tag Archive for: DLBCL patient

How a Gastrointestinal Symptom Led to My DLBCL Diagnosis



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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Related Resources:

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

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


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

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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