Leukemia Diagnosis Stories | The Patient Story

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)

  • 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

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

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

William Y., Acute Lymphoblastic Leukemia (ALL)



1st symptoms: Extreme fatigue, achey hands
Treatment: Chemotherapy, CAR T-Cell therapy

Lauren J., Acute Lymphoblastic Leukemia (ALL)



1st symptoms: Extreme fatigue, easily bruised
Treatment: Chemo pills, chemotherapy, spinal taps, total body radiation, bone marrow transplant
Renata R.

Renata R., B-Cell Acute Lymphoblastic Leukemia, Philadelphia chromosome-positive (Ph+ALL)



1st symptoms: Fatigue, shortness of breath, nausea, fevers, night sweats
Treatment: Immunotherapy, chemotherapy, TKI, stem cell transplant (tentative)
Anna T. feature profile

Anna T., B-Cell Acute Lymphoblastic Leukemia, Philadelphia chromosome-negative (Ph-ALL)



Symptoms: Heavy period for a few hours, fatigue, feverish, sweating, bruises on legs
Treatment: ECOG 10403
Tatijane W. feature profile

Tatijane W.



Symptoms: Bone pain in ribs, trouble breathing, fast heart rate, painful lymph nodes in the neck, lump in between breasts
Treatment: Chemotherapy, double CAR T-cell therapy (clinical trial), bone marrow transplant

Pediatric Acute Lymphoblastic Leukemia (ALL)

No post found


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

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

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

Nicole T., Acute Myeloid Leukemia (AML)



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

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

Leslie T., Acute Promyelocytic Leukemia (APL)



Cancer details:A sub-type of AML
1st symptoms:Fatigue, joint paint, migraines, bruising easily, trouble breathing
Treatment:Chemotherapy (Atra & arsenic)

McKenzie R. Acute Promyelocytic Leukemia (APL)




1st symptoms: Repeat sinus infections, abnormally heavy menstrual cycle
Treatment: Chemotherapy (ATRA oral pill & Arsenic trioxide infusions)
Michele

Michele G., Acute Myeloid Leukemia (AML)



1st symptoms: Bruising, tiredness, shortness of breath, itching



Treatment: IV chemo, 2 stem cell transplants, targeted chemo pill
Acute Myeloid Leukemia Patient Stories on AML Diagnosis, Treatment & Side Effects Acute myeloid leukemia or AML is one type of leukemia, a cancer of the blood and bone marrow that happens when the bone marrow makes an abnormal type of white blood cell called myeloblasts, red blood cells, or platelets. It’s the most common
Renee F. feature profile

Renée F.



Symptoms: Bruising
Treatment: Chemotherapy, radiation, allogeneic bone marrow transplant
Steve B. is an AML Cancer thriver who experienced a Stem Cell Transplant.
Steve B. Diagnosis: Acute Myeloid Leukemia (AML) Symptoms: Low white blood cell count Treatment: 7+3 chemotherapy, pre-transplant conditioning, stem cell transplant
Emily T. feature profile

Emily T.



Symptoms: Nosebleeds, fever, chills, small red spots all over the body
Treatment: Chemotherapy, bone marrow transplant

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:

Susan K. feature profile

Susan K.



Symptoms: Swollen lymph nodes on the neck, high white blood count
Treatment: Venetoclax & obinutuzumab

Hannah D.



1st Symptoms: fatigue, high WBC



Treatment: Imbruvica, Venetoclax
Andrew SchorrDiagnosis: Myelofibrosis, Chronic Lymphocytic Leukemia (CLL)Treatment: Clinical trial, Gazyva, Jakafi, Increbic, Reblozyl and steroids

Jeff F.



1st Symptoms: Fatigue and night sweats



Treatment: Clinical trial of ofatumumab

Leesa T.



1st Symptoms: Bruising



Treatment: Imbruvica (ibrutinib),
Brukinsa (zanubrutinib)
Michele Nadeem-Baker

Michele N.



1st Symptoms: Slow healing, scalp infection, enlarged lymph nodes



Treatment: Clinical trial of ibrutinib, fludarabine, chlorambucil and rituximab; acalabrutinib
Tamsin W. feature

Tamsin W.



1st symptoms: Out of breath, dizzy, nauseated, tiredness, palpitations
Treatment: Obinutuzumab & venetoclax

Bill M.



1st symptoms: Tightness, lumps in left side of neck, severe pain in left shoulder, enlarged spleen
Treatment (CLL): 6 cycles of EPOCH, clinical trial for DuoHexabody-CD37

Stephen B.



1st symptoms: difficulty swallowing and fatigue
Treatment: Rituxan, Bendamustine, targeted therapy BTK inhibitor (ibrutinib)

Sean R.



1st symptoms: No apparent symptoms; went to ER for unrelated shoulder pain
Treatment: Clinical trial, Ibrutinib & Venetoclax

Lacey B.




1st symptoms: Extreme fatigue and elevated WBCs
Treatment: FCR chemo and Venetoclax+R

Tony D.



1st Symptoms: Lump in back of neck that got bigger in a couple weeks
Treatment: Targeted therapy - orall pill (Imbruvica), takes 3 pills a night

Chronic Myeloid Leukemia (CML)


Michele T., Chronic Myeloid Leukemia (CML)



1st Symptoms: Trouble breathing, rash, bruising



Treatment: Sprycel and Bosulif

Blood Cancer Oncologists & Experts


Rafael Fonseca, MD



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

Farrukh Awan, MD



Role:Hematologist-oncologist, associate professor
Focus:Leukemias, Lymphomas, BMT
Institution:UT Southwestern
...

Nina Shah, MD



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

Kerry Rogers, MD



Role: Hematologist, researcher
Focus: Chronic lymphocytic leukemia (CLL), Hairy Cell Leukemia (HCL)
Institution: OSUCCC-The James
...

Tim Fenske, MD, MS



Role: Hematologist-Oncologist
Focus: chronic lymphocytic leukemia (CLL) & leukemia and lymphoma | CAR T, targeted therapy
Provider: Medical College of Wisconsin
...

Irene Ghobrial, MD



Role: Clinical investigator and professor of hematological oncology
Focus: Multiple myeloma, Waldenström’s Macroglobulinemia, early screening, clinical trials
Provider:Dana-Farber Cancer Institute (Boston)
...

Edmund Tai, M.D.



Role: General oncologist, hematologist
Focus: Specialist in treating Chinese-speaking patients
Provider: Sutter Health (Bay Area, CA)
...

Jacqueline Barrientos, MD



Role: Hematologist, researcher
Focus: Chronic lymphocytic leukemia (CLL), lymphoma, 17p Deletion (Ibrutinib, Acalabrutinib, Venetoclax), IgHV mutation
Provider: Northwell Health (NYC)
...

James Berenson, MD



Oncologist: Specializing in myeloma and other blood and bone disorders
Experience: 35+ years
Institution: Berenson Cancer Center
...