Patient Stories

Neurofibromatosis type 1 patient attends Camp Fantastic for the first time

Thirteen-year-old Dom was diagnosed with neurofibromatosis type 1 at birth. Because of Dom’s diagnosis, he hasn’t always had the opportunity to do the things the average teenager does, but his first year at Camp Fantastic changed that. Camp Fantastic, an annual week-long camp for pediatric cancer patients and survivors, gave Dom the opportunity to try lots of new things and some familiar ones in a setting of support, safety and friendship.

Pediatric Oncology Branch patient shares neurofibromatosis journey at NIH

Xavier, a patient in the Pediatric Oncology Branch, was born with an incompletely formed leg bone and a large number of dark spots all over his body. When Xavier broke his weak leg at only 11 months of age, he was diagnosed with neurofibromatosis type 1 (NF1). He came to the NIH for treatment, and his tumors have shrunk by more than 20 percent thanks to treatment with selumetinib.

A patient’s 10-year journey to moxetumomab for hairy cell leukemia

Randy, a father, husband, engineering quality consultant and lifelong “Motor City” resident, was diagnosed with hairy cell leukemia in 1998 at the age of 41. After participation in a clinical trial at the NIH Clinical Center, his body has shown a complete response to the drug moxetumomab pasudotox, which was developed at the National Cancer Institute’s Center for Cancer Research.

From father to daughter: A bone marrow transplant for GATA2 deficiency

James and Jahleel are a father-daughter duo from Tennessee who came to NIH for Jahleel’s bone marrow transplant. Jahleel was diagnosed with GATA2 deficiency, a rare genetic disease that causes a wide range of symptoms, including myeloid leukemias.

Prostate cancer journey leads to immunotherapy

A 14-year battle with metastatic castration-resistant prostate cancer led Tom to the doors of the NIH Clinical Center. A combination immunotherapy clinical trial led by James Gulley, M.D., Ph.D., turned the tide in his fight and led to a passion for advising prostate cancer patients.

Fighting a rare central nervous system tumor with research and optimism

In January 2016, Sarah Rosenfeld had such severe pain shooting down her legs she couldn’t walk, sleep or care for her young daughters. After weeks of physical therapy for what she thought was sciatica, she had an MRI. Thirty-seven-year-old Rosenfeld learned she had something far worse: myxopapillary ependymoma, a rare cancerous tumor in her spinal cord. She came to the NIH for treatment options and enrolled in a clinical trial with Mark Gilbert, M.D., Chief of the Neuro-Oncology Branch at the Center for Cancer Research.

Former clinical trial patient featured on CBS This Morning

Dr. Jon LaPook, Chief Medical Correspondent at CBS News, recently featured Michael Becker during a segment on CBS This Morning. Becker, who is a former patient of James Gulley, M.D., Ph.D., Chief of the Genitourinary Malignancies Branch, is fighting head and neck cancer caused by the human papillomavirus (HPV). He previously participated in a clinical trial at CCR and has made it his personal mission to spread the word about the HPV vaccine. Watch the segment here…

Pediatric patients featured in NIH Children’s Inn 2017 Annual Report

Lucy was diagnosed with Hyper IgE syndrome or Job’s syndrome – a rare genetic illness that puts her at risk for developing serious lung and skin infections. Avery has a rare NFKB1 gene mutation that compromises her immune system. For both patients, clinical trials at the Center for Cancer Research provided life-saving bone marrow transplants to address infections caused by immune deficiencies. Lucy and Avery stay at The Children’s Inn when they come to NIH for treatment. Read Lucy’s story (page 3) and Avery’s story (page 5) in the Children’s Inn Annual Report…

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