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Atiya Thought Her Cough Was a Cold; It Was Non-Hodgkin Lymphoma (Primary Mediastinal B-Cell Lymphoma or PMBCL) in Her Chest
Atiya M., Primary Mediastinal B-Cell Lymphoma (PMBCL), Stage 2B Symptoms: Coughing, facial puffiness, dizziness Treatments: Chemotherapy, radiation therapy (proton therapy)
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Allison’s 15 Years of Caregiving Through Fanconi Anemia and Multiple Cancers
Allison B., Spouse of Sean B., Fanconi Anemia (FA) and Skin, Tongue, Bladder, Esophageal, Throat, and Liver Cancer Patient “[Caregivers] are part of the story too; this is going to impact every part of your life and your well-being. Recognize that and name that from the beginning.”
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A Rash Only My Wife Worried About Turned Out to Be BPDCN, an Ultra-Rare Blood Cancer
Jim T., Blastic Plasmacytoid Dendritic Cell Neoplasm (BPDCN) Symptoms:Persistent itching, rash on the upper back Treatments: Targeted therapy (tagraxofusp/Elzonris), allogeneic stem cell transplant
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Hannah’s Rare DSRCT Cancer Diagnosis at 23, After Extreme Fatigue, Weight Loss, and Back Pain
Hannah J., Desmoplastic Small Round Cell Tumor (DSRCT) Symptoms: Weight loss, fatigue, back pain Treatments: Chemotherapy, surgeries (abdominal surgery with radioactive isotope treatment (through a clinical trial), kyphoplasty, spinal reconstruction surgery, spinal fusion surgery, resection of tumor in psoas muscle), targeted radiation therapy (proton therapy)
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Chelsea’s Bump on Her Temple During Pregnancy Turned Out to Be Leiomyosarcoma
Chelsea S., Leiomyosarcoma, Stage 4 (Metastatic) Symptoms: Painless bump on the temple with a stinging sensation, a small lump near the pelvis Treatments: Surgeries (excisional biopsy, wide excision surgery, excision of pelvic recurrence), chemotherapy (doxorubicin and trabectedin)
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Jade Thought She Had Appendicitis; When She Found Out It Was Stage 4 Appendix Cancer, Her World Changed Forever
Jade F., Appendix Cancer (Appendix Adenocarcinoma with Mucinous Features), Stage 4 (Metastatic) Symptoms: Constant pain on the right side, constipation, bloatedness, exhaustion Treatments: Surgeries (appendectomy, hemicolectomy, hepatectomy, cytoreductive surgery or CRS), chemotherapy (hyperthermic intraperitoneal chemotherapy or HIPEC, FOLFOX)
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From ‘Routine Hernia’ to Rare Cancer: Katie’s Stage 4 Alveolar Soft Part Sarcoma (ASPS) Story
Katie L., Alveolar Soft Part Sarcoma (ASPS), Stage 4 (Metastatic) Symptom: Appearance of lump in abdominal area Treatments: Radiation therapy, surgeries (abdominal resection with mesh placement, reconstruction), immunotherapy
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How Jesse Faced Acute Lymphoblastic Leukemia and a Bone Marrow Transplant
Jesse G., Early T‑cell Precursor Acute Lymphoblastic Leukemia (ETP‑ALL) Symptoms: Lump under the chin, progressive lymph node swelling above the clavicles, facial swelling, fatigue, malaise, “flu‑like” feeling Treatments: Chemotherapy (hyper-CVAD, pediatric/AYA regimen), allogeneic stem cell transplant, donor lymphocyte infusion + nelarabine
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When the Lump Wasn’t Nothing: Selina’s Stage 4 Parotid Gland Cancer Experience
Selina P., Parotid Gland Cancer (Mucoepidermoid Carcinoma of the Parotid Gland), Stage 4 (Metastatic) Symptoms: Appearance of a small, movable, eventually painful lump that would sometimes produce a “crackling” sensation when touched, persistent earache Treatments: Surgeries (parotidectomy, lymphanadectomy), targeted radiation therapy
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“Not Me. That’s Not My Story.”: Haley’s Rarest of the Rare Diagnosis – Breast-Primary Neuroendocrine Carcinoma
Haley K., Neuroendocrine Carcinoma Symptoms: Dark urine, extreme fatigue, loss of appetite, constipation, poor-quality sleep, mood swings due to hormonal changes Treatment: Chemotherapy (carboplatin and paclitaxel)
