Bladder cancer: What is a survivor?

Bladder cancer: What is a survivor? By Kathleen Hoffman, PhD, MSPH Bladder cancer is the fourth most common cancer in men. When detected early, it is considered highly treatable.1 In 2021, about 83,000 people were expected to be diagnosed with bladder cancer (64,280 in men and 19,450 in women).2 Ninety percent of these cancers are urothelial carcinomas (UC), or cancers of the lining of the urinary tract. Unfortunately, UC may also recur. For example, consider that about 50% of all bladder cancers are discovered while the cancer is only in the inner layer of the bladder wall [...]

Melanoma a “fake cancer”? — Public perception and research strides

Melanoma a “fake cancer”? — Public perception and research strides By Kathleen Hoffman, PhD, MSPH In a discussion of melanoma on Inspire, a caregiver said to fellow members: The doctors and drug companies are making tremendous strides in the treatment of this terrible disease!! Her message of hope resonates strongly today. Unfortunately, misconceptions about this cancer linger among the general population. One newly diagnosed patient on Inspire described their confusion: I was recently diagnosed with stage 3C...I honestly always thought melanoma was “fake” cancer, because you just cut it off, right? The fact that people didn’t associate [...]

Are we moving beyond Levodopa for Parkinson’s Disease?

Are we moving beyond Levodopa for Parkinson’s Disease? By Kathleen Hoffman, PhD, MSPH In November, the American Academy of Neurologists (AAN) updated their 2002 guidelines for treatment of Parkinson’s Disease (PD) with dopaminergic drugs (drugs that improve dopamine release). The preeminent drug for treatment of early Parkinson’s, levodopa, creates the dopamine neurotransmitter that people with Parkinson’s progressively lack. Despite the fact that levodopa was approved to treat Parkinson’s over fifty years ago, the updated guidelines reaffirm that levodopa combined with carbidopa is still the best first-line treatment for motor symptoms of early PD when compared with the [...]

Beating back chronic myelogenous leukemia

Beating back chronic myelogenous leukemia By Kathleen Hoffman, PhD, MSPH A patient feels fine, but a routine complete blood count (CBC) test reveals an unusually high white blood cell count. High white blood cell counts may result from many conditions, but if it’s accompanied by other signs such as high or low platelet counts and anemia, further tests may reveal that the patient has Chronic Myelogenous Leukemia, or CML. CML is a blood cancer that starts in the bone marrow and results in an overgrowth of damaged white blood cells. Most people’s diagnosis begins after a routine [...]

“Still alive and kicking” – The importance of sickle cell disease clinical trial awareness

"Still alive and kicking" - The importance of sickle cell disease clinical trial awareness By Kathleen Hoffman, PhD, MSPH Sickle cell disease (SCD) is a rare disease: an inherited and incurable blood disorder that causes red blood cells to be misshapen and rigid, affecting their ability to provide oxygen to tissues. Their shape and rigidity cause random blood vessel inflammation and blockages anywhere in the body, with associated organ damage. Six million people suffer from SCD worldwide and many more carry the trait that causes it.1 It prevails in people whose genetics include a connection with sub-Saharan [...]

New classes of psoriatic arthritis drugs in clinical trials show promise

New classes of psoriatic arthritis drugs in clinical trials show promise By Kathleen Hoffman, PhD, MSPH Psoriatic Arthritis (PsA) is an inflammatory autoimmune disease affecting approximately one to two percent of the population. While psoriasis causes red and scaly patches on the skin, PsA creates mild to severe pain and swelling of any joint. About 5 to 30 percent of patients with psoriasis eventually develop PsA, and 85 percent of people with PsA have psoriasis as a comorbidity. Because there is no cure, treatment is focused on symptom management.1,2,3 That is the high-level view. At the experiential [...]

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 [...]

The Life Changing Diagnosis of Inflammatory Bowel Disease

The Life Changing Diagnosis of Inflammatory Bowel Disease By Kathleen Hoffman, PhD MSPH ​​ I've had UC for 4 years also. Diagnosed with a colonoscopy after 5 months of diarrhea, losing 1/3rd of my otherwise normal weight and enough blood to require a 2-pint transfusion. Pausing a conversation to use the restroom is biologically necessary, but can be socially awkward. People living with inflammatory bowel diseases (IBD) find themselves saying “Excuse me” many more times a day than they would like and experience pain with symptoms nobody enjoys talking about. The two most common inflammatory bowel diseases [...]

Living with a Mysterious Illness: Scleroderma

Living with a Mysterious Illness: Scleroderma By Kathleen Hoffman, PhD, MSPH Unless you’re a specialist, you might not recognize a chronic disease that is named for its effect on the skin -- but might not appear there. It’s scleroderma. In fact, the symptoms vary greatly for each person: From 75-90% of patients have GI symptoms with it; it can be visible or invisible; it can come and go or last a lifetime; and can be mild or life threatening. The cause is unknown and it might appear at any age., It affects about 300,000 people in the [...]