Hodgkin’s Lymphoma Stories
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 an overview of Hodgkin’s lymphoma, check out our Hodgkin’s lymphoma 101 page.
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.
A form of blood cancer that develops when lymphocytes, a type of white blood cell, grow out of control.
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)
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
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)
Manda M., Relapsed Hodgkin’s, Stage 2B
Symptoms: Loss of menstrual cycles, iron deficiency, itching, night sweats, tiredness, night terrors, trouble breathing, difficulty concentrating, enlarged lymph nodes
Treatment: ABVD chemotherapy, radiation, ICE chemotherapy, bone marrow transplant
Samantha S., Relapsed Hodgkin’s
Symptoms: Fatigue, cough, enlarged lymph node
Treatment: ABVD chemotherapy (later changed to AVD), Brentuximab, Cyclophosphamide, BEAM chemotherapy, autologous bone marrow transplant
Nodular Lymphocyte Predominant
A form of slow-growing blood cancer that form predominantly in lymph nodes as a result of abnormal growth of B lymphocytes.
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Hodgkin’s Lymphoma Resources
Patient Self-Advocacy: A Conversation on Speaking Up for Ourselves Four incredible Hodgkin lymphoma patients/survivors share how they were able to advocate for themselves throughout their cancer care.
The Latest in Hodgkin Lymphoma with Dr. Matthew Matasar: Dr. Matthew Matasar with Rutgers Cancer Institute discusses emerging and most-promising therapy options for relapsed/refractory Hodgkin lymphoma patients and those newly-diagnosed.
Looking for non-Hodgkin’s lymphoma stories and resources? Visit the non-Hodgkin’s lymphoma stories page.
Hodgkin’s Lymphoma Oncologists & Experts
Read interviews from medical experts who specialize in blood cancers including Hodgkin’s lymphoma.
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