New Treatments Create Buzz Among Patients with Prostate Cancer and their Caregivers

New Treatments Create Buzz Among Patients with Prostate Cancer and their Caregivers By Kathleen Hoffman, PhD MSPH Prostate cancer is highly treatable in its early stages, much less so once it has metastasized, where the five-year survival rate is below 30%. In search of more treatment options, a patient with advanced prostate cancer wrote on Inspire: I was diagnosed with prostate cancer in [date]. Have done virtually every procedure including the de Vinci surgery (cancer had gotten outside into my lymph nodes, so prostate was not removed), radiation, hormone treatments, and chemo therapy. Periodic bone scans showed the [...]

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Jul 2021By |0 Comments

Engaging with Non-Small Cell Lung Cancer and Small Cell Lung Cancer Patients and Caregivers

Engaging with Non-Small Cell Lung Cancer and Small Cell Lung Cancer Patients and Caregivers By Kathleen Hoffman, PhD, MSPH The word “Earth” doesn’t reflect the complexity and diversity of the planet. Similarly, the term “lung cancer” only identifies the location of the cancer. There are two general categories, non-small cell lung cancer (NSCLC) and small cell lung cancer (SCLC), differentiated by cell size, characteristics, treatments and prognosis. Genetic research continues to differentiate lung cancers at a molecular level, revealing subtypes within those categories, creating opportunities for increasingly targeted therapies. For example, since eight driver mutations have been [...]

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Jul 2021By |0 Comments

Patient Perspectives on an Invisible Disease: Lupus and Lupus Nephritis

Patient Perspectives on an Invisible Disease: Lupus and Lupus Nephritis By Kathleen Hoffman, PhD, MSPH Imagine going to see a doctor when you are exhausted and enduring multiple kinds of pain, and they recommend a “psych” evaluation. When they “can’t find anything,” the medical professional you looked to for help decides you must be making it up. Many patients with conditions that mimic other disorders describe facing this challenge. Systemic Lupus Erythematosus (SLE or lupus) is one such condition. Members of the LupusConnect Support Community on Inspire describe going through Herculean efforts to find help, only to [...]

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Jul 2021By |1 Comment

More Good News about Treating Multiple Myeloma

More Good News about Treating Multiple Myeloma By Kathleen Hoffman, PhD, MSPH This spring, the FDA approved a drug called idecabtagene vicleucel ('ide-cel'), a form of CAR-T cell therapy available to treat some forms of recurrent multiple myeloma (MM). Ide-cel is used to modify a patient’s own T-cells to attack the B-cell maturation antigen (BCMA) present in myeloma.1 Multiple myeloma is a rare chronic cancer of the blood plasma that accounted for only 1.8% (32,000) of all new cancer cases in the United States in 2020, with approximately 12,410 deaths expected in 2021.1,2,3 To give an idea [...]

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Jun 2021By |0 Comments

Searching for Answers to Migraines

Searching for Answers to Migraines By Kathleen Hoffman, PhD, MSPH Migraine headaches can be devastatingly debilitating: When my migraines get so bad, I stare at the wall in complete silence not letting my head touch anything. If my head touches something, it will send more pounding pain throughout my skull. Migraines are a widespread source of disability worldwide, with one systematic review of US government health studies finding 15.3% of Americans reporting a severe headache or migraine in the past three months.1 Three percent of all emergency room visits are for severe headache. Treating them remains difficult, [...]

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Jun 2021By |0 Comments

Genetic and Cellular Studies Carve New Pathways to Treating Epithelial Ovarian Cancer

Genetic and Cellular Studies Carve New Pathways to Treating Ovarian Cancer By Kathleen Hoffman, PhD, MSPH Ovarian, fallopian tube cancer and primary peritoneal cancer are often grouped under the name epithelial ovarian cancer. When classified as subcategories of ovarian cancer, primary peritoneal cancers and fallopian tube cancers are considered rare. The incidence rate of primary peritoneal cancer is estimated to be 6.78 per million.1 Fallopian tube cancers have been thought to be “very rare,” accounting for 1-2% of all gynecologic cancers.2 Because these cancers are usually advanced by the time they are diagnosed, it has been difficult [...]

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Jun 2021By |0 Comments

Cancer, COVID, and Vaccinations: The Patient Perspective at ASCO 2021

Cancer, COVID, and Vaccinations: The Patient Perspective at ASCO 2021 By Kathleen Hoffman, PhD, MSPH Inspire is presenting the results of two separate surveys during the American Society of Clinical Oncology® (ASCO) virtual conference being held June 4-8. Chosen from the more than 5,400 abstracts submitted for the 2021 ASCO Annual Meeting, the studies focus on COVID-19 vaccine hesitancy and reactions to the vaccine among patients with cancer. Inspire’s cancer community Inspire has almost one million members who are patients with cancer and their caregivers. In the last 15 years, over three million posts (3,555,105) have been [...]

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Jun 2021By |0 Comments

Promising New Therapies for Treating Atopic Dermatitis

Promising New Therapies for Treating Atopic Dermatitis By Kathleen Hoffman, PhD, MSPH People who do not have atopic dermatitis (AD), also called eczema, can have the simple experience of having an itch relieved by scratching. For people with atopic dermatitis, this is a heavenly fantasy. For AD sufferers, the symptom most of them have in common is areas of skin with unrelenting itching, burning, or otherwise painful discomfort. I am absolutely miserable with eczema on my face. ... I think I have it under control, and then ,bang, there it goes again - the unbearable itching, stinging, [...]

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May 2021By |0 Comments

In Search of Answers: Head and Neck Squamous Cell Carcinoma (HNSCC)

In Search of Answers: Head and Neck Squamous Cell Carcinoma (HNSCC) By Kathleen Hoffman, PhD, MSPH The basic dry facts about Head and Neck Squamous Cell Cancer (HNSCC) are that it is a cancer of the mucosal lining of the oral cavity and larynx; typical treatments include surgical intervention, chemotherapy, radiation, and, more recently, immunotherapy, followed by various kinds of rehabilitation and reconstruction. However, let’s make it real. A member of Inspire’s Head and Neck Cancer Alliance community describing their Survivor Story said: I am [an] oral cancer (Tongue cancer) survivor (my age is ___ years). In [...]

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May 2021By |0 Comments

I was diagnosed with Ankylosing Spondylitis at 15

I was diagnosed with Ankylosing Spondylitis at 15 By Kathleen Hoffman, PhD, MSPH Imagine a patient with inflammatory joint pain. You’re probably not visualizing a young person in his 20’s or teens with severe lower back pain, but that’s a likely scenario for sufferers of ankylosing spondylitis (AS). One Inspire member said: I was diagnosed with AS at 15 years old ... in my case it took an emergency room visit when I could hardly move and freaked out. I had an amazing House-style emergency room doctor who solved the mystery by ruling out injuries/mechanical problems and [...]

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May 2021By |0 Comments