Hodgkin’s Lymphoma Diagnosis Stories
Read in-depth stories from real patients about their journey battling Hodgkin’s lymphoma, also known as Hodgkin’s Disease.
These former patients share everything from first symptoms, diagnosis (or misdiagnosis), to treatment and recovery. Our community members also highlight how they navigated life with and after cancer, including the importance of self-advocacy as a patient, how they handled the mental and emotional stress, and survivorship.
We also feature medical experts, including some of the most renowned hematologist-oncologist voices in research and practice now.
Introduction to Hodgkin’s Lymphoma
What is Hodgkin’s lymphoma? Also known as Hodgkin’s Disease, Hodgkin’s lymphoma is a disease in which malignant (cancer) cells form in the lymph system. It may then spread to the liver, lungs, or bone marrow.
Some of the most common first symptoms of Hodgkin’s lymphoma can include:
- Swelling of the lymph nodes (painless), often in the neck, armpits, or groin area
- Fever and chills
- Night sweats
- Weight loss
- Loss of appetite
- Itchy skin
For more background, please choose one of these specific information pages:
Hodgkin Lymphoma General Info
ABVD Chemotherapy Info
Lymphoma Symptoms
Non-Hodgkin Lymphoma Stories
Hodgkin’s Lymphoma Patient Stories
Our community members dive deeper into their cancer stories than any others, sharing their first symptoms, different treatment paths and side effects, and reflections on the entire experience. Choose stories based on subtypes below.
Classical
Madi J., Hodgkin's, Stage 1B
Cancer details: Most common and most treatable form of Hodgkin lymphoma
1st Symptoms: Shortness of breath
Treatment: 3 rounds (6 infusions) of ABVD chemo
Danielle D., Hodgkin's, Stage 2
Cancer details: Diagnosed at age 25
1st Symptoms: Swollen lump on right side of neck/chest area, continued to grow
Treatment: ABVD chemotherapy (3 cycles = 6 infusions)
Lani S., Hodgkin's, Stage 2
Cancer details: Tumor pressing on heart
1st Symptoms: Appendicitis led to CT scan that found tumor
Treatment: ABVD chemotherapy, 7 cycles
Jason F., Hodgkin's, Stage 2A
Cancer details: Diagnosed at 39
1st Symptoms: Itchy legs, bloated face and “upper trunk,” slow-healing wounds, asthma worsened
Treatment: 6 cycles (12 infusion) ABVD chemo, 18 radiation therapy sessions
Logan A., Hodgkin's, Stage 2A
Cancer details: Diagnosed at age 15
1st Symptoms: Lump in neck & fatigue
Treatment: 4 cycles of ABVE-PC chemo
Helicon K., Hodgkin's, Stage 2A
Cancer details: Found lymphoma cells in adenoid tissue
1st Symptoms: Difficulty breathing with blockage in nose, surgery to remove tissue resulted in discovery of Hodgkin lymphoma cells
Treatment: ABVD chemotherapy (4 cycles), radiation (20 sessions)
Lauren C., Hodgkin's, Stage 2A
Cancer details: Diagnosed at 23 years old with nodular sclerosis, relapsed after 6 months of 1st-line treatment
1st Symptoms: Itchy body, enlarged lymph node over collar bone
Treatment: ABVD chemotherapy and ICE, radiation, and stem cell transplant for relapse
Wade W., Hodgkin's, Stage 2A
Cancer details: Diagnosed at 18 years old
1st Symptoms: Enlarged lymph nodes (around neck), diagnosed at 18 years old
Treatment: ABVD chemotherapy (2 cycles), AVD chemotherapy (4 cycles)
Moe C., Hodgkin's, 2B, Relapse
Cancer details: Diagnosed at 19, relapsed before remission
1st Symptoms: Fatigue, weight loss, night sweats
Treatment: ABVD chemo, DHAP chemo, MINE-R chemo, splenectomy, autologous bone marrow transplant
Fabiola L., Hodgkin's, Stage 2BX
Cancer details: Stage 2 with bulky disease, relapsed after 1st chemo. Remission after 2nd chemo & bone marrow transplant
1st Symptoms: Shortness of breath, dry cough, fatigue
Treatment: ABVD chemo (6 cycles), IGEV chemo, bone marrow transplant, BEAM chemo, brentuximab
Stephanie O., Hodgkin's, Stage 2B
Cancer details: Stage 2 with bulky disease
1st Symptoms: Shortness of breath, dry cough
Treatment: Stanford V chemotherapy (12 weeks, 1 infusion each week), radiation (20 days)
Charlie B., Hodgkin's, Stage 2B
Cancer details: Diagnosed at 32
1st Symptoms: Lump in neck
Treatment: ABVD chemotherapy
Katee P., Hodgkin, Stage 2B
Cancer details: Accidentally found in x-ray after months of symptoms
1st Symptoms: Night sweats, fatigue, extreme itchiness, persistent cough
Treatment: Clinical trial; AAVD chemo, immunotherapy
Mara T., Stage 2BX (Bulky)
1st Symptoms: Shortness of breath, back pains, daily migraines
Treatment: 3 rounds of ABVD, 3 rounds AVD, Radiation
Topics: Self-advocacy, mental health
Jade B., Hodgkin, Stage 2X
Cancer details: Diagnosed at 21 years old
1st Symptoms: Itchy legs and feet
Treatment: ABVD chemotherapy (4 treatments), AVD (remaining treatments)
Tylere P., Hodgkin, Stage 3
Cancer details: Mother is a nurse practitioner; suspected cancer
1st Symptoms: Swollen lymph nodes in neck
Treatment: Clinical trial; Chemotherapy, BMT
Kayla T., Hodgkin's, Stage 3A
Cancer details: Possibly misdiagnosed the first time; later diagnosed as grey zone lymphoma
1st Symptoms: Pulled muscle in chest
Treatment: ABVD chemo, radiation, high-dose chemo, stem cell transplant
Erica H., Hodgkin's, Stage 3B
Cancer details: Staged at 3B
1st Symptoms: Intense itchiness, fatigue, night sweats, weight loss
Treatment:ABVD chemotherapy, 6 cycles (12 infusions)
Nicole M., Hodgkin's, Stage 4
Cancer details: Staged 2 then 4 after second opinion
1st Symptoms: Extreme fatigue, persistent itching on lower half of legs
Treatment: 6 cycles (12 infusions) chemo, ABVD then AVD (dropped bleomycin)
CC W., Hodgkin's, Stage 4
Cancer details: Diagnosed at 29, misdiagnosed as mono
1st Symptoms: Achiness, extreme fatigue, reactive rash on chest and neck. Later: chills, night sweats
Treatment: ABVD chemotherapy (6 cycles)
Lia S., Nodular Sclerosis, Stage 4A
Cancer details: Most common and most treatable form of Hodgkin's lymphoma
1st Symptoms: Extreme lower back pain
Treatment: ABVD chemotherapy
Ava O., Stage 4B
1st Symptoms: Trouble digesting, weak immune system, raised glands, night sweats, chest pain, extreme fatigue
Treatment: 6 cycles of ABVD chemotherapy
Topics: Emotional grieving, mental health, letting go
Delishea A., Hodgkin's, Stage 4B
1st Symptoms: Extreme itchiness and dry cough
Treatment: 6 cycles of chemo, radiation, Adcetris
Topics: Finding community & support, self-advocacy
Nodular Lymphocyte Predominant
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Oncologists & Experts
Read interviews from medical experts who specialist in blood cancers like Hodgkin’s lymphoma.
Babis Andreadis, MD
Oncologist: Specializing in blood cancers like lymphoma, leukemia, and multiple myeloma
Experience: 20+ years
Institution: Univ. of California, San Francisco (UCSF)
James Berenson, MD
Oncologist: Specializing in myeloma and other blood and bone disorders
Experience: 35+ years
Institution: Berenson Cancer Center
Dr. Jacqueline Barrientos, M.D.
Role: Hematologist, researcher
Focus: Chronic lymphocytic leukemia (CLL), lymphoma, 17p Deletion (Ibrutinib, Acalabrutinib, Venetoclax), IgHV mutation
Provider: Northwell Health (NYC)
Dr. Edmund Tai, M.D.
Role: General oncologist, hematologist
Focus: Specialist in treating Chinese-speaking patients
Provider: Sutter Health (Bay Area, CA)
Rafael Fonseca, MD
Role: Consultant, Division of Hematology/Oncology; Dept. Chair, Internal Medicine; professor of medicine
Focus: Myeloma; defining sub-type distinctions | Clinical Trials, Selinexor, Darzalex
Provider: Mayo Clinic
Dr. 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)
Tim Fenske, MD, MS
Role: Hematologist-Oncologist
Focus: chronic lymphocytic leukemia (CLL) & leukemia and lymphoma | CAR T, targeted therapy
Provider: Medical College of Wisconsin
David Miklos, MD
Role: Chief of BMT & Cell Therapy, Clinical Director of immunotherapy program
Focus: Blood cancers (lymphoma, leukemia, myeloma), CAR T-cell therapy, blood and marrow transplantation
Provider: Stanford Medical
Kerry Rogers, MD
Role: Hematologist, researcher
Focus: Chronic lymphocytic leukemia (CLL), Hairy Cell Leukemia (HCL)
Institution: OSUCCC-The James
Nina Shah, MD
Role:Hematologist-oncologist, researcher
Focus:Multiple Myeloma
Institution:University of California, San Francisco (UCSF)