Hodgkin’s Lymphoma Stories: Symptoms, Diagnosis, Treatment | The Patient Story

Hodgkin’s Lymphoma Stories
Symptoms, Diagnosis, Treatment

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.

Hodgkin’s Lymphoma Stories: Nodular Sclerosis, Stage 1B | Madi’s Story

Madi Jones, Hodgkin's, Stage 1B

Cancer details: Most common and most treatable form of Hodgkin lymphoma
1st Symptoms:
Shortness of breath
3 rounds (6 infusions) of ABVD chemo
Hodgkin’s Lymphoma Stories: Danielle Doyle, Classical, Stage 2 | The Patient Story

Danielle Doyle, 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)
Hodgkin’s Lymphoma Stories: Lani Skelley, Classical, Stage 2 | The Patient Story

Lani Skelley, 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
Hodgkin’s Lymphoma Stories: Logan Agee, Stage 2A, Adolescent (AYA) Cancer | The Patient Story

Logan Agee, Hodgkin's, Stage 2A

Cancer details: Diagnosed at age 15
1st Symptoms:
Lump in neck & fatigue
4 cycles of ABVE-PC chemo
Hodgkin’s Lymphoma Stories: Helicon Kuan, Classical, Stage 2A | The Patient Story

Helicon Kuan, 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)
Hodgkin’s Lymphoma Stories: Lauren Chiarello, Stage 2A, Relapse, Nodular Sclerosis | The Patient Story

Lauren Chiarello, 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
Hodgkin’s Lymphoma Stories: Wade Winslow, Classical, Stage 2A, AYA Cancer | The Patient Story

Wade Winslow, 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)
Hodgkin’s Lymphoma Stories: Moe Chaar, Stage 2B, Relapse, Transplant| The Patient Story

Moe Chaar, 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
Hodgkin’s Lymphoma Stories: Fabiola Lopez, Stage 2BX (Bulky Disease), Relapse | The Patient Story

Fabiola Lopez, 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
Hodgkin’s Lymphoma Stories: Classical, Stage 2BX, Bulky Disease | Stephanie Ou

Stephanie Ou, 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)
Hodgkin’s Lymphoma Stories: Charlie’s Brickham, Classical, Stage 2B | The Patient Story

Charlie Brickham, Hodgkin's, Stage 2B

Cancer details: Diagnosed at 32
1st Symptoms: Lump in neck
Treatment: ABVD chemotherapy
Hodgkin’s Lymphoma Stories: Katee Petro, Classical, Stage 2B | The Patient Story

Katee Petro, 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
Hodgkin’s Lymphoma Stories: Mara Thrasher, Stage 2BX (Bulky Disease) | The Patient Story

Mara Thrasher, 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
Hodgkin’s Lymphoma Stories: Jade Blouin, Classical, Stage 2X (Bulky Disease) | The Patient Story

Jade Blouin, Hodgkin, Stage 2X

Cancer details: Diagnosed at 21 years old
1st Symptoms: Itchy legs and feet
Treatment: ABVD chemotherapy (4 treatments), AVD (remaining treatments)
Hodgkin’s Lymphoma Stories: Classical, Stage 3, Relapse | Tylere Presley

Tylere Presley, Hodgkin, Stage 3

Cancer details: Mother is a nurse practitioner; suspected cancer
1st Symptoms: Swollen lymph nodes in neck
Treatment: Clinical trial; Chemotherapy, BMT
Hodgkin’s Lymphoma Stories: Stage 3A, Refractory to Gray Zone Lymphoma | Kayla Tremblett

Kayla Tremblett, 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
Hodgkin’s Lymphoma Stories: Stage 3B, Classical | Erica’s Story

Erica Hernandez, 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)
Hodgkin’s Lymphoma Stories: Stage 4 | Nicole Massoumi

Nicole Massoumi, 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)
Hodgkin’s Lymphoma Stories: Stage 4, Classical | CC’s Story

CC Webster, 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)
Hodgkin’s Lymphoma Stories: Classical, Nodular Sclerosis, Stage 4A | Lia Sartorio

Lia Sartorio, Nodular Sclerosis, Stage 4A

Cancer details: Most common and most treatable form of Hodgkin's lymphoma
1st Symptoms:
Extreme lower back pain
ABVD chemotherapy
Hodgkin’s Lymphoma Stories: Ava O’Toole, Stage 4B | The Patient Story

Ava O'Toole, 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
Hodgkin’s Lymphoma Stories: Stage 2A | Jason Friesen

Jason Friesen, 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

Nodular Lymphocyte Predominant

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Oncologists & Experts

Read interviews from medical experts who specialist in blood cancers like Hodgkin’s lymphoma.

Lymphoma, Leukemia, Myeloma Doctor, Hematologist Oncologist: Dr. Babis Andreadis | The Patient Story

Dr. Babis Andreadis, Blood Cancer Specialist

Oncologist: Specializing in blood cancers like lymphoma, leukemia, and multiple myeloma
Experience: 20+ years
Hospital/clinic size: Large teaching institution
Myeloma Doctor, James Berenson, Oncologist | The Patient Story

Dr. James Berenson, Multiple Myeloma Specialist

Oncologist: Specializing in myeloma and other blood and bone disorders
Experience: 35+ years
Hospital/clinic size: Large private practice
CLL Doctor (Chronic Lymphocytic Leukemia) Dr. Jacqueline Barrientos, Oncologist

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)
Hematologist-Oncologist, Dr. Edmund Tai: Multicultural Patients | The Patient Story

Dr. Edmund Tai, M.D.

Role: General oncologist, hematologist
Focus: Specialist in treating Chinese-speaking patients
Provider: Sutter Health (Bay Area, CA)
Myeloma Expert, Hematologist-Oncologist, Clinical Trials: Dr. Rafael Fonseca

Dr. Rafael Fonseca, M.D.

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
Myeloma Doctor, Hematologist-Oncologist, Clinical Trials: Dr. Irene Ghobrial | The Patient Story

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)
CLL/SLL Specialist – CAR T, Acalabrutinib, Ibrutinib, Idelalisib, Venetoclax: Dr. Tim Fenske

Dr. Tim Fenske, Leukemia & Lymphoma Specialist

Oncologist: Specializing in chronic lymphocytic leukemia (CLL) & other leukemia and lymphoma | CAR T, Acalabrutinib, Ibrutinib, Idelalisib, Venetoclax
Experience: ~15 years
Hospital/clinic size: Mid-sized institution
Cancer Clinical Trials, CAR T-Cell Therapy, Bone Marrow Transplants, GVHD | Dr. David Miklos

Dr. David Miklos

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