Impressive Advances in Treating Chronic Lymphocytic Leukemia

Impressive Advances in Treating Chronic Lymphocytic Leukemia By Kathleen Hoffman, PhD, MSPH Chronic Lymphocytic Leukemia (CLL) is the most prevalent form of adult leukemia, with about 20,000 new diagnoses per year in the United States alone.1  While it can occur at earlier ages, it is primarily a disease of older adults, with 70 years as the average age at diagnosis. Most of those who are diagnosed have no symptoms.2 CLL is often discovered when patients have a regular CBC test, and the findings indicate that the white blood cell (WBC) count is elevated. Under a microscope, the [...]

Undertreated Psoriasis Patients Need Answers

Undertreated Psoriasis Patients Need Answers By Kathleen Hoffman, PhD, MSPH A 2021 study concluded that psoriasis continues to be a common inflammatory disease, affecting more than 7.5 million adults in the US alone --  3.0% of the US adult population.1  By far the most common form (80% of cases)2 is plaque psoriasis, which intermittently creates patches of scaly and itchy skin, often on the scalp, knees, or elbows, but there are multiple distinct types with different presentations. The inflammation that creates psoriasis is also linked with an increased risk for other conditions, by a process that is [...]

Positive News for Triple Negative Breast Cancer

Positive News For Triple Negative Breast Cancer By Kathleen Hoffman, PhD, MSPH Almost 150,000 patients and caregivers have interest in, have joined communities, have searched and posted about breast cancer and advanced breast cancer on Inspire. Almost 22,000 posts have been written about breast cancer research. There has been intense interest in finding medications that can penetrate the 10-20% of breast cancers that don’t respond to the medications that target three hormone and protein receptors on the tumor cell’s surface. When a breast tumor cell lacks the receptors for estrogen, progesterone, or HER-1 or -2 on the [...]

“I need to breathe” — Living with Asthma: Patient Experiences, Old Challenges, New Drugs

"I need to breathe" — Living with Asthma: Patient Experiences, Old Challenges, New Drugs By Kathleen Hoffman, PhD MSPH Earlier this month, the American Lung Association (ALA), Inspire’s partner for the “Living with Asthma” online community, announced that it is looking for patient panelists to participate in a PFDD (Patient-Focused Drug Development) meeting on Pediatric Asthma, to be held virtually on 9/20/2021. “The meeting will consist of an overview of pediatric asthma, an explanation of the Food and Drug Administration’s PFDD meeting process, and two panel sessions,” explained Annette Eyer, the ALA’s National Assistant Vice President [...]

Out of Nowhere: Kidney Cancer

Out of Nowhere: Kidney Cancer By Kathleen Hoffman, PhD MSPH Of the estimated 1.9 million cancers diagnosed each year in the US, around 4 percent are kidney cancers, the most common are renal cell carcinomas (RCC). Around 76,000 new cases will occur in the US in 2021, 48,0000 in men and 27,000 in women. Kidney cancer can occur at any age, but is most likely to be diagnosed between the ages of 55 - 75.1,2,3 Out of the Blue Patients and caregivers describe sudden and unexpected diagnoses of kidney cancer: My husband was just newly diagnosed [...]

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 [...]

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 [...]

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 [...]

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 [...]

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, [...]