Leukemia Diagnosis Stories from Patients

What is leukemia? Leukemia is a broad term for cancers of the blood cells, most often occurring in adults over 55, but also a common cancer in children under 15.

The type of leukemia depends on the type of blood cell that becomes cancer and whether it grows quickly or slowly. (NCI)

Explore below for leukemia stories from real patients, from symptoms, diagnosis, to treatment.

• Acute Lymphoblastic Leukemia (ALL) Stories
  • Pediatric ALL Stories
• Acute Myeloid Leukemia (AML) Stories
• Chronic Lymphocytic Leukemia (CLL) Stories
• Chronic Myeloid Leukemia (CML) Stories
• Blood Cancer Oncologists & Experts

Acute Lymphoblastic Leukemia (ALL)

• Common symptoms: Fatigue, weakness, drenching night sweats, fever, easy bleeding or bruising, shortness of breath, loss of appetite or weight loss, bone or stomach pain, pain or feeling of fullness below ribs, painless lumps in neck, underarm, stomach, groin, lots of infections

Evan L., Acute Lymphoblastic Leukemia (ALL)



1st symptoms: Extreme fatigue, easily bruised
Treatment: Chemo infusions, chemo pills, spinal taps, cranial radiation

Casey H., Acute Lymphoblastic Leukemia (ALL)




1st symptoms: Lump on throat, extreme fatigue, shortness of breath, bruising easily
Treatment: Chemo, immunotherapy, radiation, stem cell transplant

Veronica B., Acute Lymphoblastic Leukemia (ALL)




1st symptoms: Mild shortness of breath and palpitations
Treatment: Chemo, targeted therapy, double cord transplant

Christine M., Acute Lymphoblastic Leukemia (ALL)



1st symptoms: Enlarged lymph nodes, pain in abdomen, nausea
Treatment: Chemotherapy, bone marrow transplant

Ciara T., Acute Lymphoblastic Leukemia (ALL)



Cancer details: Treatment without blood tranfusions
1st symptoms: Fatigue, shortness of breath, night sweats, petechiae
Treatment: Chemotherapy

Pediatric Acute Lymphoblastic Leukemia (ALL)

Acute Myeloid Leukemia (AML)

Acute Myeloid Leukemia is a cancer in which the bone marrow makes immature white blood cells, known as myeloblasts. AML is the most common type of acute leukemia in adults.

Sasha T., Acute Myeloid Leukemia (AML)



1st symptoms: Easily bruised and swollen, painful hip
Treatment: 4 chemo infusions, bone marrow transplant

Luisa L., Acute Myeloid Leukemia (AML)



Cancer details: Most common type of acute leukemia in adults
1st symptoms: Painful hives on legs & migraines
Treatment: 3 cycles of chemo, total body radiation & stem cell transplant

Hayley A., Acute Myeloid Leukemia (AML), M5



Cancer details: Most common type of acute leukemia in adults
1st symptoms: Severe fatigue and excessive bleeding after oral surgery
Treatment: Chemotherapy, bone marrow transplant

Nicole T., Acute Myeloid Leukemia (AML)



1st symptoms: Severe itchiness, night sweats, fatigue
Treatment: Chemotherapy, bone marrow transplant

Mary Clare B., Acute Myeloid Leukemia (AML)



Cancer details: Relapsed but in remission after 2nd transplant
1st symptoms: Extreme fatigue, upset stomach, bad & persistent headaches
Treatment: Chemotherapy, radiation, 2 bone marrow transplants

Chronic Lymphocytic Leukemia (CLL)

CLL is the most common form of leukemia in the U.S. It’s a cancer in which the bone marrow makes too many lymphocytes (a type of white blood cell).

Chronic lymphocytic leukemia (also called CLL) is a blood and bone marrow disease and usually progresses slowly as opposed to acute leukemias. It is the most common type of chronic leukemia in adults.

More on CLL:

• Chronic Lymphocytic Leukemia Page
• What is CLL?
• Treatment options for CLL
  • Ibrutinib
• Dr. Kerry Rogers on CLL
• Dr. Jacqueline Barrientos on CLL
• Dr. Timothy Fenske on CLL

Stephen B.



Symptoms: Difficulty swallowing, fatigue
Treatment: Rituxan, bendamustine, BTK inhibitor (ibrutinib)

Sean R.



Symptoms: No apparent symptoms; went to ER for unrelated shoulder pain
Treatment: Clinical trial (ibrutinib & venetoclax)

Lacey B.




Symptoms: Extreme fatigue, elevated WBCs
Treatment: Chemotherapy (FCR), venetoclax + rituximab

Tony D.



Symptoms: Lump in back of neck that got bigger in a couple weeks
Treatment: BTK inhibitor (Imbruvica)

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Chronic Myeloid Leukemia (CML)

Michele T., Chronic Myeloid Leukemia (CML)



1st Symptoms: Trouble breathing, rash, bruising



Treatment: Sprycel and Bosulif

Mark K. Symptoms: Weight loss, low energy, night sweats, enlarged spleen, elevated WBC count, frequent need to urinate

Treatment: Tyrosine kinase inhibitors (TKIs) including Sprycel

Blood Cancer Oncologists & Experts

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Rafael Fonseca, MD



Role: Interim executive director, hematologist-oncologist
Focus: Multiple myeloma, new drug development
Institution: Mayo Clinic
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Farrukh Awan, MD



Role:Hematologist-oncologist, associate professor
Focus:Leukemias, Lymphomas, BMT
Institution:UT Southwestern
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Nina Shah, MD



Role: Hematologist-oncologist, researcher
Focus: Multiple Myeloma
Institution: University of California, San Francisco (UCSF)
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