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From ‘Routine Hernia’ to Rare Cancer: Katie’s Stage 4 Alveolar Soft Part Sarcoma (ASPS) Story
From ‘Routine Hernia’ to Rare Cancer: Katie’s Stage 4 Alveolar Soft Part Sarcoma (ASPS) Story Katie’s experience with alveolar soft part sarcoma or ASPS, a very rare type of soft tissue sarcoma, began in her early 20s. After a bad cough led her to discover a small lump in her lower abdomen, which she thought…
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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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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
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How Getting a Second Opinion Saved Crystal’s Life After a Rare Soft Tissue Sarcoma Diagnosis
Crystal S., Malignant Peripheral Nerve Sheath Tumor (MPNST) Symptoms: Inability to urinate, intense pain due to inability to urinate Treatment: Chemotherapy, surgeries (cystectomy, proctectomy or Barbie butt surgery, permanent colostomy, permanent urostomy, partial hysterectomy, reconstruction)
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Choosing Quality of Life in Her Rhabdomyosarcoma Treatment
Brittany C., Rhabdomyosarcoma, Stage 4 Symptom: Small, sharp lump on the right side of the jaw Treatments: Surgeries (tumor removal & planned corrective jaw surgery), chemotherapy, radiation therapy, clinical trial
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Janelle’s Stage 4 Adrenal Cancer Story of Connection
Janelle C., Adrenal Cancer (Adrenocortical Carcinoma), Stage 4 Symptoms: Excessive thirst and water intake, interrupted sleep due to waking to drink and urinate, suspicious weight gain despite working out Treatments: Surgeries (adrenalectomy, nephrectomy), chemotherapy
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Abbie’s Rare Cancer Diagnosis of Solitary Plasmacytoma of Bone
Abigail W., Solitary Plasmacytoma of Bone (SPB) Symptoms: Lesion on rib visible on earlier scans, persistent localized rib pain, fatigue Treatment: Radiation therapy
