No-Shave November: Cancer Awareness Month

Suzanne H.

Suzanne H.

Sales and Marketing

No-Shave November Starts Now

For over a decade, the month of November has been known as “No-Shave November.” Named for an awareness and fundraising campaign that originated in 2009 on Facebook, this month-long event has grown exponentially over the years, raising over $10M since its inception. Matthew Hill, a Chicago resident, and father of 8 died of colon cancer in 2007 at the age of 50, and his children started this project as a way to honor his memory.

Through the month of November, “No-Shave” participants let their hair grow as a way to start conversations and raise money for cancer research. Participants pledge to donate the cost of hair grooming for the month – from several dollars for razors to hundreds for a hair salon visit – to fund cancer research.

Participation in clinical studies allows patients the ability to try new therapies, with the hope that these treatments will be life-extending or even life-saving. These trials often run for years and usually involve a series of treatments and assessments at a clinical trial site or hospital. Often, patients must travel significant distances to the study visits. Partnering with a patient concierge service to handle logistics – flight and rail travel, ground transportation, and reimbursement/stipend payment – alleviates the burden of lengthy oncology clinical trial participation. Removing financial, logistical, and emotional barriers allows the patient to focus on their treatment and personal health along the way.

Challenges of a Rare Cancer Diagnosis

The challenge for patients with rare cancers is even more significant, as fewer treatments are available and the patient population is much smaller than with a common oncology diagnosis. With fewer treatment options comes fewer clinical sites, so the length of travel is also increased significantly. Some patients are physically debilitated and/or immunosuppressed by traditional chemotherapy, so special care must be taken when getting them to and from their appointments. A very ill patient may feel overwhelmed with the commitment of time and energy required to participate in a clinical trial.

A patient logistics partner with experience in the rare oncology space can be invaluable. Patient coordinators research the rare disease affecting their participants and anticipate their needs before and during travel to site visits. Often, patients require a caregiver to accompany them to their tests and treatments, and the coordinator also assists with their needs.

Rare cancers often do not get the amount of research funding and media coverage of more common cancers, like breast cancer and prostate cancer. When receiving a rare cancer diagnosis, one may feel alone and unsure of the treatment path that lies ahead. With the assistance of their patient coordinator, they have a partner for the duration of their clinical trial.

Rare Cancer: A Closer Look

Adolescent Melanoma

Melanoma, also known as malignant melanoma, is the most severe type of skin cancer and often spreads to other body parts. Melanoma usually occurs in adults due to continued exposure to the sun and typically begins on the chest, back, or legs. It grows inward and can affect blood vessels and the lymphatic system before impacting organs like the brain and lungs. Melanoma is very rare in children and adolescents, with less than 500 cases reported yearly in the United States. However, it is the most common skin cancer in pediatric patients. In some patients, genetic factors increase the risk of developing melanoma. These include:

    • Xeroderma pigmentosum – a rare hereditary enzyme defect affecting DNA repair after sun exposure; this condition also causes extreme sensitivity to sunlight
    • Werner syndrome – a rare progressive accelerated aging disorder
    • Retinoblastoma – a rare cancer of the retina
    • Melanocytic nevi – large moles, usually not cancerous, caused by a pigment disorder

Advanced Renal Cell Carcinoma

Renal cell carcinoma occurs in the tubules of the kidney. While still classified as rare (affecting less than 200,00 people in the United States), it is the number one form of kidney cancer in adults.  Most common in older men, obesity and cigarette smoking has been linked to renal cell carcinoma. The advanced form of the disease often includes spreading into the blood, lymph nodes, the adrenal gland, and other organs. The five-year survival rates for these advanced stages are as low as 8%.

Lymphoma

Lymphoma is a lymphatic system cancer and affects the lymph nodes, thymus gland, spleen, and bone marrow. There are two types of lymphoma, non-Hodgkin’s lymphoma and Hodgkin’s lymphoma.

Non-Hodgkin’s lymphoma is diagnosed when a Reed-Sternberg cell is not present. Both forms of lymphoma are rare, with approximately 70,000 non-Hodgkin’s lymphoma cases diagnosed in the United States each year. Hodgkin’s lymphomas are even more rare, resulting in less than 8,000 cases diagnosed yearly in the United States.

Patients with non-Hodgkin’s lymphoma tend to be diagnosed later in life, with the median age around 60 years old. Hodgkin’s lymphoma is most common in younger patients and is most often diagnosed in those 15 to 24 years old.

Multiple Myeloma

Also called Kahler’s disease, this rare cancer attacks the white blood cells within an individual’s bone marrow, causing low platelet count, anemia, and frequent infections. In more severe cases, bone tumors form, causing fractures, as well as severe kidney damage.

Approximately 100,000 people in the United States are currently fighting this disease, with the median age of diagnosis of 68 years. Multiple myeloma usually begins as a benign condition known as monoclonal gammopathy of undetermined significance (MGUS), which also presents with abnormal plasma cells.

Genetic factors can play into an increased chance of having multiple myeloma, as well as repeated exposure to substances like pesticides and petroleum.

Join us for No-Shave November

Millions of people worldwide are currently suffering from over 100 types of cancer, many of them rare cancers with few patients and limited treatment options. November is a month to embrace your personal health while using the No-Shave November campaign to help others who are not so fortunate. Clincierge has joined the No-Shave November movement to help increase awareness and raise funds for cancer research. We are stronger together.

Join us in the No-Shave November movement, and ask us how we can help support your rare cancer patients.

We are monitoring the impact of the COVID-19 Delta Variant on the travel and clinical trial industries.