New video explains immunotherapy treatment options for non-small cell lung cancer (NSCLC)

by Tara Whithington, CAE – SITC Executive Director
Click here to watch the NSCLC Immunotherapy video

Click here to watch the NSCLC Immunotherapy video

What is cancer immunotherapy? How does immunotherapy work to control cancer? Should I consider participating in a cancer immunotherapy clinical trial?

In response to patients’ questions like these, Society for Immunotherapy of Cancer (SITC) just released an animated video explaining the basics of immuno-oncology, and showing how immunotherapy clinical trials are providing new hope for many non-small cell lung cancer (NSCLC) patients.

Cancer immunotherapy is a promising treatment option that harnesses the power of the immune system to recognize and attack cancer cells. Immunotherapy drugs have already received FDA approval for treating specific tumor types such as melanoma, prostate cancer and renal cell carcinoma, and scientists are using immunotherapies against several other types of cancer in clinical trials across the country. One of these diseases is non-small cell lung cancer (NSCLC), the type of cancer accounting for 85%-90% of lung cancer cases in the United States. Scientists have reported some positive results for immunotherapy treatments in NSCLC clinical trials, currently the only avenue for NSCLC patients to receive these drugs.

SITC created the engaging video, Non-small Cell Lung Cancer Immunotherapy: A New Hope™, in response to the growing demand for patient-centered educational resources about cancer immunotherapy treatments. This video offers unbiased, easy to understand explanations of how cancer immunotherapy works, as well as information about clinical trials for patients with NSCLC. The video was produced in collaboration with leading cancer care and support organizations including Cancer Support Community, LUNGevity, Lung Cancer Alliance, Bonnie J. Addario Lung Cancer Foundation, and Association of Community Cancer Centers, and offers hope by empowering patients to make informed treatment decisions that are best for them and their families.

Throughout the planning, writing, and editing stages of video production, SITC consulted with a range of stakeholders including an expert task force of three lung cancer immunotherapists, and two focus groups representing clinical oncologists, nurses, patients, social workers, and patient advocates. The resulting video offers a balanced view of NSCLC immunotherapy options as it equips viewers with the knowledge base they need to ask questions about participating in a clinical trial.

Since the launch of the video, SITC and our partnering organizations have witnessed a very positive response, and we are asking for YOUR help in spreading the message of hope for patients with NSCLC. Please pass the video along to your friends and family, and share the video on your social media networks! Together we can empower patients, raise awareness of promising immunotherapy treatments and promote innovations in cancer immunotherapy research.

Posted in Cancer Treatment, Living with Cancer | 1 Comment

Gray in May – Brain Tumor Awareness

BT_facts_infoThis month you might hear, “Wear Your Gray in May” or see that many of your friends have made their profiles on social media sites gray. This is because May is Brain Tumor Awareness Month, and gray is its color.

The brain and spinal cord make up the Central Nervous System (CNS). Tumors that originate in the brain and spinal cord are referred to as CNS tumors. More than 688,000 people in the United States are living with a primary brain tumor or CNS tumor.

Brain tumors are classified as either benign (non-cancerous) or malignant (cancerous). About 550,000 people in the United States are living with benign tumors and 138,000 are living with malignant tumors.

Brain tumors are also organized as either primary or metastatic. Primary brain tumors originate in the brain, while metastatic brain tumors result from cancers that started somewhere else in the body and metastasized (or spread) to the brain. The most common types of cancers that spread to the brain are breast cancer, lung cancer, colon cancer, and melanoma.

A brain tumor diagnosis can trigger a number of emotions, including fear, loneliness, and anger. It is important to remember that you are not alone and there are many resources available to help you. Through these resources, you can take charge of your experience and gain a sense of empowerment.

If you or a loved one is living with a malignant brain tumor, CSC has a number of free resources to help:

Want to help raise awareness for brain tumors this month? Tweet using the hashtag #TuneIn2GBM and tune in to next week’s episode of Frankly Speaking About Cancer for a special episode on brain tumors.

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Working together to achieve the same mission

President and CEO Kim Thiboldeaux with Andy and Dotty, two volunteers from Cancer Support Community San Francisco Bay Area, in the Breakaway from Cancer photo booth

President and CEO Kim Thiboldeaux with Andy and Dotty, two volunteers from Cancer Support Community San Francisco Bay Area, showing their CSC pride in the Breakaway from Cancer photo booth at the Amgen Tour of California.

Google “cancer organization” and your browser’s results will seem endless. All sorts of nonprofits are out there offering a variety of educational resources and supportive programs for people impacted by cancer, whether on a local, national or international level. But if you don’t know what to look for, how do you find out about resources that fit your needs? If you’ve been following the CSC blog for a while, the Breakaway from Cancer initiative is nothing new—in fact, it has been going strong for 10 years! This partnership is unique in that it brings cancer organizations together to share resources and help patients and their loved ones get the support they need.

What is Breakaway, again? Here’s a refresher: Breakaway from Cancer was founded in 2005 by Amgen. It’s a partnership of Amgen and four nonprofit organizations that cover the full cancer experience, from prevention through survivorship. These organizations are the Cancer Support Community, the Prevent Cancer Foundation, the Patient Advocate Foundation and the National Coalition for Cancer Survivorship. Breakaway’s mission is to spread the word about all of the helpful, high quality, free resources that exist for people impacted by cancer.

One of the places you’ll hear about Breakaway from Cancer is at major sporting events. Happening right now is the Amgen Tour of California, the largest professional cycling race in America. At events like the Tour, you’ll find the Breakaway partners sharing resources at the Lifestyle Festival, which accompanies each stage of the race. The Tour also has mini-events like the Breakaway Mile Walk, where cancer survivors and their loved ones come together to show their support of all people impacted by cancer.

Another place you’ll hear about the partnership is online. When searching for resources online to help him during his cancer diagnosis, Patrick Devinger came across the Breakaway from Cancer website. From there, he learned about the Cancer Support Community (that’s us!) and found his local affiliate, Cancer Support Community San Francisco Bay Area. Now cancer-free, he remains an active volunteer with the organization. Patrick shared his story on our radio show last week. Follow the Cancer Support Community and our Breakaway partners this year at the Amgen Tour of California by checking out the action on our Facebook page and the Twitter hashtag #breakaway.

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Doctor Priorities vs. Patient Priorities

bigstock-Doctor-Nurse-Talking-With-Kin-45083488For a doctor, the number one priority is treating the patient’s illness. But for patients, their number one priority isn’t always their disease. A disease is just one part of someone’s life. So, what happens when your priorities and your doctor’s priorities don’t mix?

In a recent New York Times blog post, physician Danielle Ofri, M.D., recalled a particular patient she had—a well-informed, middle aged patient who was living with diabetes—and how shocked she was to hear he had been ignoring his disease for years, causing it to become drastically worse. However, he wasn’t overlooking his illness out of ignorance; the treatment for the disease simply was not suitable for his lifestyle and needs.

“For my patient, his wide-angle lens took in the whole of his life, of which diabetes was one small part. For me, in the 20 minutes allotted, my lens was narrowly focused on the disease that posed the gravest and most immediate risk to his health,” Dr. Ofri writes.

Living with a cancer diagnosis can be similar. The disease and its treatment can be disruptive to everyday life. However, it’s important to discuss your lifestyle, priorities and what options you have with your doctor so the disease can be treated effectively without compromising your lifestyle and your personal needs.

For the patient in the story, managing his disease meant having lengthy discussions with the doctor over both practical and philosophical matters, such as how a taxi driver who spent most of his day immobile and eating street-vendor food could adhere to the diet and exercise requirements necessary to control his disease. When discussing treatment, it’s important to talk to your doctor about these different facets of your life, such as how conducive your work or home life is to getting the type of diet and exercise you need, how your religious background could affect treatment, how to best manage side effects of treatment and the type of quality of life you can expect with treatment.

This blog shows that making a decision about treatment is never easy, and coming to an agreement with your health care team about what’s best for you can also be a unique challenge. Treatment isn’t just about the disease, but also how to make life “workable” for you. People living with cancer often run into dilemmas such as wanting to have hair for a family wedding, or wanting to feel healthy enough for a certain event. These concerns and requests are very common, and it’s important to let your doctor know about any individual goals you may have so you can work together to decide the best treatment plan. Click here to read the full New York Times blog.

At the Cancer Support Community, we recognize the delicate balance between having the lifestyle you’re comfortable with and treating your disease. Through open and honest communication with your doctor, you can find that balance without ignoring your disease or giving up your lifestyle. Programs like Open To Options help you come up with an organized list of what questions to ask and topics to discuss with your doctor so you can make a treatment decision right for you. Open To Options is made available through the Cancer Support Helpline, or through certain CSC Affiliate locations.

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When life gives you lemons, make lemonade. When life gives you cancer…

Maaran Cohen, CEO, Hello Doctor

Maayan Cohen, CEO, Hello Doctor

Today’s guest blogger is Maayan Cohen, CEO and Founder of Hello Doctor™, a free mobile app that empowers people to control their health and organize their own medical records. Below is Maayan’s story that tells how she and the Hello Doctor team are revolutionizing and simplifying the patient experience.  

4 years ago, my former boyfriend started having bad headaches. They usually started around the evening time, until one day he woke up with a headache — that’s when I knew that something was seriously wrong. I dragged him to the emergency room and 3 hours later, the sky fell on us. A scan revealed he had a brain tumor and must undergo immediate surgery. That morning marked the beginning of 2 excruciating years of fighting cancer that included surgeries, chemotherapy, lab tests, radiations, second opinions and countless visits to doctors who are part of disparate medical networks whose technology systems don’t talk with each other.

HD_LogoEach doctor we saw gave us a net of about 10 minutes face time. Beyond the uncertainty and fear, the worst part of these meetings was trying to explain his medical condition by pulling out the relevant Medical Records that the doctor wanted to see out of my “medical binder”. I knew that if I could not find the right document at the right time it would affect his treatment and in this case — it can even cost us his life.

This story has a couple of happy endings. First, my former boyfriend went into permanent remission, he is doing great today and we are still good friends. The second is Hello Doctor. The frustrations of my experience with the health care system inspired me to quit my job and start Hello Doctor, which is intended to help millions of people who are dealing with the same frustration that I had to deal with. Today, Hello Doctor’s team has 5 members — all went through a similar experience with different medical conditions — bowel disease, breast cancer, ALS and pregnancy monitoring. We have all been there, and we decided to devote our career to helping people feel less confused and more in control when talking to their doctors.

Hello Doctor stores your medical records on your tablet or smartphone

Hello Doctor stores your medical records on your tablet or smartphone

Hello Doctor is a free mobile app that empowers people to control their health. We started with an iPad app that helps people to manage and understand their medical records. It allows you to easily aggregate all of your medical records (paper or digital) on your tablet and get to any one of them in literally just 2 taps. It allows you to share your medical records with your doctor and take notes on the medical records themselves — so that you won’t forget what bothered you and resolve it in time. It’s that simple and it’s that useful, especially in real time — when you are facing your doctor.

Download Hello Doctor to your smartphone or tablet today!

Download Hello Doctor to your smartphone or tablet today!

A few weeks ago we found out that we are already helping people. Ilene, a 60 year old cancer survivor sent us an amazing thank you letter. “A simple flu shot meant that I have to take my 2 medical binders with me to the doctor as he doesn’t have access to all of my records. Your app is invaluable”. This is exactly what we dreamed of when we started this project and we need your help in spreading the word about Hello Doctor. You can start by downloading and trying it yourself — take control over your health now. Manage your medical records with Hello Doctor.

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