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

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

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Empowered AML Patient: Ask the AML Expert

Empowered AML Patient: Ask the AML Expert 

How an AML Survivor’s Resilience Saved Her Life

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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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30-Year Acute Myeloid Leukemia Survivor Shares His Journey

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.

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Empowered AML Patient: Ask the AML Expert

Empowered AML Patient: Ask the AML Expert 

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Advice for Acute Myeloid Leukemia Patients Seeking a Clinical Trial

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.

Share Your Feedback About [ACT]IVATED AML

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

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.

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[ACT]IVATED AML Resource Guide

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Share Your Feedback About [ACT]IVATED AML

How an AML Survivor’s Resilience Saved Her Life



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.

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Advice for Acute Myeloid Leukemia Patients Seeking a Clinical Trial

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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.