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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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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)
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LeeAnn Found Meaning After Her Adult Diffuse Intrinsic Pontine Glioma (DIPG) Brain Tumor Diagnosis
LeeAnn T., Brain Tumor (Diffuse Intrinsic Pontine Glioma or DIPG), Grade 2 Symptoms: Facial tingling, double vision Treatment: Radiation therapy
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Parenthood, Persistence, and Rare Cancer: Ali’s Adenoid Cystic Carcinoma Experience
Ali C., Adenoid Cystic Carcinoma Symptom: Small lump under the jaw Treatments: Surgery, radiation therapy
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The Nickel-Sized “Bruise” That Changed My Life: Sophie’s Stage 2 Ewing Sarcoma Story
Sophie F., Ewing Sarcoma (Soft Tissue), Stage 2 Symptoms: Appearance of a nickel-sized, blue, and solid but soft and spongy mark on upper left arm Treatments: Surgeries (cyst excision surgery, wide excision surgery), chemotherapy
