AML Activated Patients Archives

A Patient’s Proactive Path to an Acute Myeloid Leukemia Diagnosis

June 20, 2024/in Acute Myeloid Leukemia, AML Activated, AML Activated Patients, AML Programs, Patient Stories, PEN Blog /by Kara Rayburn

A Patient’s Proactive Path to an Acute Myeloid Leukemia Diagnosis from Patient Empowerment Network on Vimeo.

Meet Paloma, a 58-year-old acute myeloid leukemia (AML) survivor. After experiencing breathlessness, sore gums, and other symptoms that were initially misdiagnosed, she trusted her instincts and sought further medical support, leading to her AML diagnosis. Discover Paloma’s journey and the vital importance of being proactive and staying [ACT]IVATED in your cancer care.

See More from [ACT]IVATED AML

Related Resources:

Empowered AML Patient: Ask the AML Expert

How an AML Survivor’s Resilience Saved Her Life

Advice for Acute Myeloid Leukemia Patients Seeking a Clinical Trial

Transcript:

Being ACTIVATED in your cancer care is critical and also a continuous journey. My name is Paloma, and I’m eager to share my journey as an acute myeloid leukemia patient in the hopes that it will help other patients and families. AML doesn’t discriminate; it can affect anyone, regardless of lifestyle or healthy eating habits.

I was 58 when I was diagnosed with AML, and my diagnosis was pretty shocking to me. I learned that you really need to trust your instincts when it comes to your health. I felt like something was off with my body, but my initial symptoms were only some breathlessness upon exertion and sore gums. But then additional symptoms started including a dry cough, some flu-like symptoms, and lumps under my armpits. I saw my primary care provider, and she prescribed antibiotics and sent me for a chest x-ray that came back without issues.

When my breathlessness worsened along with profound fatigue, my doctor then sent me to get an ECG and additional blood tests to help determine what might be wrong. While I was waiting for my test results, my co-workers noticed that I looked thinner with my skin also being paler than usual. This was just the beginning of my AML journey. My blood tests came back with abnormal hemoglobin and blast levels, and my doctor arranged for me to be admitted to a well-regarded cancer center. I was fortunate that it was only 20 miles away but realize that not all cancer patients are this fortunate.

After seeing my AML specialist at the cancer center, he wanted to start my chemotherapy right away to fight the cancer. I was fortunate that I didn’t have issues with my intravenous line for receiving my chemotherapy. But I learned that this can be a common issue for AML patients after I joined an online AML support group. I had my first round of chemotherapy, and my daughter was able to visit me during this time. However, my care team kept monitoring my neutrophils and decided that I needed to start a second round of chemotherapy. It was now during the COVID-19 pandemic, and hospital visitors weren’t allowed.

I counted myself as fortunate that I could still continue with receiving chemotherapy. What would have happened if I’d gotten seriously ill during the early pandemic? I shudder to think that things likely would not have been easy. The hospital staff helped to keep my spirits up and also with setting up a tablet for me to do video calls with my family and friends while I was in the hospital.

Though that round of chemotherapy put me into remission for a period of time, I later came up as MRD-positive and received a targeted chemotherapy as a third round of therapy followed by a stem cell transplant. I had some graft-versus-host disease issues but got through them. I feel fortunate that there are some different treatment options for AML and would like to participate in a clinical trial to help advance treatments if I need another option on my journey. I’ve kept in touch with other patients in my AML support group during my journey from diagnosis, treatments, and recovery. I know that I couldn’t have gotten through my physical and mental challenges without them.

Though AML sounded scary at first, the future of treatment looks bright to me with emerging research and treatment options. I hope that sharing my story will make a difference for other AML patients and especially those who may come up against barriers.

No matter who you are, being proactive is a critical step in your AML journey. Stay [ACT]IVATED by being informed, empowered, and engaged in your care.

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Un superviviente de 30 años de leucemia mieloide aguda comparte su experiencia

March 14, 2023/in Acute Myeloid Leukemia, AML Activated, AML Activated Patients, AML Programs, Art Flatau, Patient Stories, PEN Blog /by Kara Rayburn

Un superviviente de 30 años de leucemia mieloide aguda comparte su experiencia from Patient Empowerment Network on Vimeo.

¿Qué podrían experimentar los pacientes con leucemia mieloide aguda (AML) en cuanto a los síntomas, el tratamiento y cómo sobrellevar la AML? Art Flatau, paciente de AML y líder de Empowerment, comparte la experiencia de su trayectoria en AML desde el diagnóstico, el tratamiento y la supervivencia de AML, y los avances en los tratamientos de AML. Art también comparte sus consejos para que los pacientes y sus cuidadores reciban una atención óptima y cómo ha encontrado un sentido a sus esfuerzos de defensa del paciente.

See More from [ACT]IVATED AML

Related Resources:

What Promising AML Treatments Are Available for Newly Diagnosed Patients?

Cómo la resiliencia de una sobreviviente de AML le salvó la vida

BIPOC Patients Living With AML | Mortality Rate and Favorable Genetics

Transcript:

Mi nombre es Art, y vivo en Austin, Texas. En 1992, tenía 31 años y me casé con dos hijos pequeños. Estaba en la escuela de posgrado y trabajando de tiempo completo. Durante un par de semanas, me había estado sintiendo cansado y había estado teniendo una fiebre de bajo grado. También tenía muchos moretones, probablemente porque estaba jugando rugby en ese momento. Pensé que la fatiga era porque estaba sobrecargado de trabajo y estaba durmiendo poco.

El sábado tuve un partido de rugby, pero estaba demasiado cansado para jugar más de unos minutos. Al día siguiente, estaba demasiado cansado para hacer mucho. Mi esposa y yo decidimos ir al médico el lunes.

El lunes por la mañana me desperté y había sangre en mi almohada porque me sangraban las encías. Mi esposa quería llevarme a la sala de emergencias, pero la convencí de llamar a nuestro médico. Fui al médico más tarde esa mañana. Ella notó mis síntomas, hizo un examen rápido y me envió a hacerme un análisis de sangre. Después del almuerzo, me llamó y me dijo que tenía que ir al hospital y ver a un hematólogo. Sabía que estaba en problemas.

Hablamos con el médico y dijo: «Tenemos que ver qué tipo de leucemia tienes». Qué shock. Sabía que estaba enfermo con algo que no había tenido antes. El hecho de que fuera cáncer fue un shock. No sabía que había diferentes tipos de leucemia, pero pronto descubrí que tenía leucemia mieloide aguda (AML).

Esa noche recibí transfusiones de plaquetas y glóbulos rojos. A la mañana siguiente, me hicieron una biopsia de médula ósea, me administraron más plaquetas y me operaron para ponerme una vía central. Esa tarde, menos de 24 horas después de oír la palabra leucemia en referencia a mí, empecé la quimioterapia. Todo esto era abrumador. No teníamos forma de entender cuáles eran nuestras opciones ni de obtener una segunda opinión.

Tres semanas y media después, salí del hospital sin cabello, 25 libras menos, mucho más débil pero vivo. Tuve más quimioterapia en las próximas semanas y más hospitalizaciones. Unos meses más tarde, terminé con la quimioterapia. Recuperé algo de fuerza, me volvió a crecer el pelo y traté de que mi vida volviera a la normalidad.

A principios de 1993, unos 9 meses después de ser diagnosticado, tuvimos otro susto, había recaído. Necesitaba un trasplante de médula ósea. Aunque tuvimos un poco de tiempo, unos días para averiguar a dónde ir para un trasplante, nuevamente nos costó entender el proceso. También estábamos luchando por encontrar la manera de mudarnos a Dallas por tres meses más para el trasplante. El trasplante fue una tarea larga, un mes más o menos en el hospital, un par de meses de ir a la clínica ambulatoria dos o tres veces por semana, pero lo logramos.

Ahora, 30 años después, sigo vivo. Mis hijos se graduaron de la escuela secundaria, la universidad y la escuela de posgrado y tienen carreras exitosas. Mi esposa y yo tenemos el nido vacío. Yo sigo trabajando, pero espero jubilarme dentro de unos años. Aunque me considero muy afortunado por haber sobrevivido y haber tenido relativamente pocos efectos secundarios, tengo algunos efectos secundarios con los que lidiar, incluida la testosterona baja.

Algunas cosas que he aprendido durante mi trayecto AML incluyen:

AML es una enfermedad rara: La buena noticia es que en los últimos años se han descubierto muchos tratamientos nuevos para AML. Estos nuevos tratamientos están haciendo que más personas sobrevivan AML. Sin embargo, estos nuevos tratamientos evolucionan rápidamente. Es importante encontrar un centro oncológico y médicos que traten a muchos pacientes con leucemia.
Considere la posibilidad de ofrecerse como voluntario: El trabajo de promoción es una forma excelente de ayudarse a sí mismo y de apoyar a otros pacientes y los esfuerzos continuos de investigación.
Si algo no se siente bien con su salud, defienda sus derechos y solicite más pruebas.

Estas acciones son clave para mantenerse en su camino hacia el empoderamiento.

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30-Year Acute Myeloid Leukemia Survivor Shares His Journey

March 14, 2023/in Acute Myeloid Leukemia, AML Activated, AML Activated Patients, AML Programs, Art Flatau, Patient Stories, PEN Blog /by Kara Rayburn

30-Year Acute Myeloid Leukemia Survivor Shares His Journey from Patient Empowerment Network on Vimeo.

What might acute myeloid leukemia (AML) patients experience for symptoms, treatment, and coping with AML? AML patient and Empowerment Lead Art Flatau shares the experience of his AML journey from diagnosis, through treatment and AML survival, and advancements in AML treatments.

Art also shares his empowerment advice for patients and care partners to ensure optimal care and how he has found a sense of purpose in patient advocacy efforts.

See More from [ACT]IVATED AML

Related Resources:

Empowered AML Patient: Ask the AML Expert

How an AML Survivor’s Resilience Saved Her Life

Advice for Acute Myeloid Leukemia Patients Seeking a Clinical Trial

Transcript:

My name is Art, and I live in Austin, Texas. In 1992, I was 31 and married with two young children. I was in graduate school and working full-time. For a couple weeks, I had been feeling tired and had been running a low-grade fever. I also had a lot of bruises, probably because I was playing rugby at the time. I thought the fatigue was because I was overworked and getting too little sleep.

On Saturday, I had a rugby game but was too tired to play more than a few minutes. The next day, I was too tired to do much. My wife and I decided that I would go to the doctor on Monday.

Monday morning, I woke, and there was blood on my pillow as my gums were bleeding. My wife wanted to take me to the ER, but I convinced her to just call our doctor. I went to the doctor later that morning. She noted my symptoms, did a quick exam, and sent me for blood work. After lunch, she called and said I needed to go to the hospital and see a hematologist. I knew I was in trouble.

We talked to the doctor and he said, “We have to see what kind of leukemia you have.” What a shock. I knew that I was sick with something I had not had before. The fact that it was cancer was a shock. I didn’t know that there were different types of leukemia but soon found out that I had acute myeloid leukemia (AML).

That evening, I received platelets and red blood transfusions. The next morning, I had a bone marrow biopsy, more platelets, and surgery to put in a central line. That afternoon, less than 24 hours after hearing the word leukemia in reference to me, I started chemotherapy. This was all overwhelming. We had no way to understand what our options were or to get a second opinion.

Three-and-a-half weeks later, I got out of the hospital with no hair, 25 pounds lighter, a lot weaker but alive. I had more chemotherapy in the next few weeks and more hospitalizations. A few months later, I was finished with chemo. I regained some strength, regrew my hair, and tried to get my life back to normal.

In early 1993, about 9 months after being diagnosed, we got another shock, I had relapsed. I needed to have a bone marrow transplant. Although we had a little time, a few days to figure out where to go for a transplant, we were again struggling to understand the process. We were also struggling to figure out how to move to Dallas for three more months for the transplant. The transplant was a long grind, a month or so in the hospital, a couple of months of going to the outpatient clinic two to three times a week, but we made it through.

Now, 30 years later, I’m still around. My children graduated from high school, college, and graduate school and have successful careers. My wife and I are empty-nesters. I am still working but hoping to retire in a few years. Although I consider myself very lucky to have survived and have had relatively few side effects, I do have some side effects to deal with, including low testosterone.

Some things that I’ve learned during my AML journey include:

AML is a rare disease: The good news is that over the last several years a lot of new treatments have been discovered for AML. These new treatments are leading to more people surviving AML. However, these new treatments are evolving rapidly. It is important to find a cancer center and doctors who treat a lot of patients with leukemia.
Consider volunteering: Advocacy work is an excellent way to help yourself and to support other patients and continued research efforts.
If something doesn’t feel right with your health, advocate for yourself and ask for further testing.

These actions (for me) are key to staying on my path to empowerment.

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Cómo la resiliencia de una sobreviviente de AML le salvó la vida

March 1, 2023/in Acute Myeloid Leukemia, AML Activated, AML Activated Patients, AML Newly Diagnosed, AML Programs, AML Treatments and Clinical Trials, AML Video ND, AML Video TC /by Kara Rayburn

Cómo la resiliencia de una sobreviviente de AML le salvó la vida from Patient Empowerment Network on Vimeo.

La paciente con leucemia mieloide aguda ( AML ) Sasha Tanori comparte prejuicios que afectaron su diagnóstico y atención de AML. Mire mientras comparte consejos sobre cómo se defendió como paciente desatendido de BIPOC y las lecciones que aprendió. Sasha también comparte cómo lidió con los obstáculos culturales Mexico Americanos de su familia, que a menudo descartan problemas de salud y médicos en un entorno de atención médica rural que usaron su peso como una forma de despedir sus problemas de salud.

See More from [ACT]IVATED AML

Related Resources:

[ACT]IVATED AML Resource Guide en español

AML Treatment Approaches Expand for Older and High-Risk Patients

A Look at Lower Intensity Chemotherapy in Untreated AML

Share Your Feedback About [ACT]IVATED AML

How an AML Survivor’s Resilience Saved Her Life

May 13, 2021/in Acute Myeloid Leukemia, AML Activated, AML Activated Patients, AML Best Care, AML Best Care Vignettes, AML Programs, Patient Stories, PEN Blog, Women Patient Stories /by Kara Rayburn

How an AML Survivor’s Resilience Saved Her Life from Patient Empowerment Network on Vimeo.

Acute myeloid leukemia (AML) patient Sasha’s symptoms were dismissed multiple times before her diagnosis. Watch as she shares the story of her cancer journey from diagnosis through treatment as a BIPOC patient – and her advice to other patients to receive equitable and optimal care.

Related Resources:

Empowered AML Patient: Ask the AML Expert

Does Acute Myeloid Leukemia Prognosis Vary by Age?

Advice for Acute Myeloid Leukemia Patients Seeking a Clinical Trial

Transcript:

My name is Sasha. I live in Brawley, California. In 2017, I was diagnosed with acute myeloid leukemia (AML). When I first noticed signs and symptoms, I wasn’t sure what was wrong, but I knew I didn’t feel like myself. I was really tired, fatigued, and getting random little bruises everywhere.

I went to my local hospital three separate times, and each time they didn’t take my concerns seriously. I’d sit in a room for hours until someone finally walked by, and I’d ask to see an expert. Staff members assumed I had already been discharged without even know what my “diagnosis” was.

When I was finally seen, they ran a few tests and sent me home saying it was just anemia or a blood disorder and if I took whatever medication they prescribed, I’d be okay. I felt very ignored. As a plus size woman of color, I’ve been told all my life from medical professionals, no matter what my issue was, if I just lost weight, I’d be fine. There were even moments when the staff assumed I didn’t know English and rudely commented behind office doors. Ironically, they thought I couldn’t understand when English is actually my first language. I knew there had to be a better explanation, but I let the medical staff push my concerns aside.

Finally, after a battery of tests, I remember the doctor walking in the room. He was acting very sad and very concerned. He put his hand on my shoulder and said, “I’m really sorry to tell you, but you have leukemia.” The day of my diagnosis, I started chemotherapy and began experiencing several side effects. One of the hardest things after being diagnosed was losing my hair. Not seeing my family was equally difficult, because my parents didn’t have the gas money or transportation.

After the full week of chemo, we had to wait for results to see if the leukemia cells were gone. It was mostly a waiting game. Finally, they told me the chemotherapy worked and that the leukemia cells were gone. But in order for them to stay gone, I would need to move forward with the bone marrow transplant.

Fortunately, the results came a few months later indicating the transplant was working. I am happy to report I’m cancer-free, but the road has not been easy. If there’s one thing I learned from my situation, it’s always trust your gut. If anyone knows your body, it’s you. My advice to other AML patients:

Trust your gut and listen to your body. If you feel something is wrong, fight for yourself
Get yourself a good healthcare team who will also fight for you and your needs
Make friends and talk to others in the cancer community
Mental health is just as important as physical health. It’s okay to talk to someone professional and ask for help

Remember, you are in control of your journey and your future. These actions are key to staying on your path to empowerment.

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