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Spotlight on: LUNGevity – The Meaning of Lung Cancer Awareness Month

People who aren’t directly impacted by lung cancer may not know that November is Lung Cancer Awareness Month.

What exactly does that mean and what can people do during November to raise awareness about lung cancer?

Lung Cancer Awareness Month (LCAM) is a national movement originally created by lung cancer organizations, survivors and advocates to dispel the stigmas associated with having lung cancer and to raise awareness of the disparities in lung cancer research during the month of November. This is done in most part by making the general public aware of the lung cancer survival rates and lack of funding for research, and putting a face to the disease.

Most people don’t know that 1 in 15 people will be diagnosed with lung cancer and that over 60% of people who are diagnosed are never smokers or people who quit smoking decades ago. It’s the deadliest cancer killer, killing twice as many women as breast cancer and three times as many men as prostate cancer.

As VP of Support and Survivorship for LUNGevity, I support and get to know a lot of lung cancer fighters. I have supported a patient as young as 16 with stage 4 lung cancer. It can happen to anyone with lungs. LCAM is about sharing the facts about the disease and need for funding, informing the public and talking to media,; it’s about offering resources to patients and providers and highlighting advocacy opportunities to change the public’s perception and outcomes for patients.

LCAM It’s not about smoking cessation or tobacco control. Some people mistake LCAM for an opportunity to talk about the hazards of tobacco and promote smoking cessation. That’s something that we should encourage people to do all year long. But that’s not lung cancer awareness. That would be lung cancer prevention, and only then it would pertain to just 10% of smokers.

Join LUNGevity, survivors and advocates across the nation as we unite to shine a spotlight on lung cancer this month.

Here are some ways you can help make a difference this month:

  • Tell someone that November is lung cancer awareness month.
  • Take a picture with a fact sign or your LUNGevity ‘Bandy’ wristband and let’s make it viral.
  • Share the facts about this disease and let people know that if they breathe, they can get lung cancer too.
  • Distribute materials in and around your area to hospitals and support organizations
  • Share our articles, blogs and videos over social media.
  • Let people know about LUNGevity’s comprehensive lung cancer 101 website
  • Let people impacted my lung cancer know about LUNGevity programs and services
  • Participate in Twitter Chats
  • Create a new event or volunteer or participate in events in your area
  • Volunteer to be a buddy for a patient or caregiver
  • Become a volunteer Social Media Ambassador

Let’s raise awareness this November in honor of the 435 people who die of lung cancer each and every day and the 220,000 people in America who are living with it.

 

Hope Summit LIVE – A Powerful Event for Powerful Patients

Hope Summit LIVE about to start!

Hope Summit LIVE about to start!

Over 200 patients, family members and care partners attended the Hope Summit LIVE town meeting for cancer patients last Saturday at Moffitt Cancer Center in Tampa, Florida. The meeting kicked off with a welcome from Andrew Schorr, Katie Brown from LUNGevity, and Randy Broad, a PEN board member and 7 year lung cancer survivor.

Medical oncologists, Drs. Carbone and Antonia took their place on the panel and talked about the nature of cancer and lung cancer specifically.

Andrew Schorr, Dr Scott Antonia and Dr David Carbone

Andrew Schorr, Dr Scott Antonia and Dr David Carbone

Dr. Antonia described the different types and stages of lung cancer. He explained how personalized treatment can help those with genetic mutations. Genetic testing is important for anyone that is at risk.

Small cell lung cancer is inside or outside of the chest and has usually spread to the lymph nodes. This cancer usually responds to chemotherapy, but immunotherapy will most likely have an important role in treating this disease as well.

Dr. Carbone explained that all treatments are useful tools and that no one therapy should be thought of as the “best”. Often, treatments are combined. It is really up to the doctor and medical team to decide which tool to use at what point in the disease process.

Dr. Carbone talked about numerous side effects and explained that there are many drugs now to help with side effects and that patients should definitely call their doctor or medical team to report any side effects so that they can be treated. “The worst thing you can do is to sit at home alone and just suffer”, he said.

Lung cancer patients Tony Benchina and Pam Griffith then joined the panel and the topic of clinical trials was raised. The panel agreed.

The audience listens

The audience listens

that clinical trials may represent the best treatment available. It is extremely important to address the issue of clinical trials with your medical team.

Pam told her story about being diagnosed with stage III lung cancer and being treated with surgery, chemo and radiation that was not at all working. The cancer had spread to her bones, both lungs and her adrenal glands. Dr. Antonia placed Pam in a clinical trial for OPDIVO (Nivolumab). The tumors started to shrink and Pam feels as though her life has been given back to her.

Dr. Antonia cautioned that although these drugs are exciting, not everyone benefits from them. Every patient has a different response and some stay in response but others don’t.

Tony told his story about his diagnosis of non small cell lung cancer and his subsequent treatment at Moffitt Cancer Center. Dr. Antonia treated Tony with standard chemo and Tony responded. Tony then enrolled in a clinical trial for nivolumab. His tumor shrunk but Tony developed auto-immune hepatitis and he had to discontinue the medication. He then went into another clinical trial for crazotinib. He became very ill and couldn’t leave his bed. He then enrolled in another clinical trial with an ELK inhibitor. The results have been phenomenal and Tony’s quality of life has vastly improved. He now goes to the gym 5 times a week and feels great.

The Panelists

The Panelists

Katie BROWNfrom LUNGevity, a patient navigator, Cynthia Shimizu, a social worker cancer specialist, and Sam Vafadar, a physician assistant, then joined the panel. The panel discussed issues of Living Well With Lung Cancer such as family dynamics, quality of life, career decisions, wishes, desires, goals and values. Cynthia stressed the importance of asking questions and involving your family and your medical team in shared decision-making. Katie talked about online support groups and the importance of asking for and looking for support if you need it. Katie mentioned also that LUNGevity talks to many cancer patients about many different issues and that they are there to answer questions and help with issues involving living with and coping with lung cancer.

Carol Preston, a cancer patient herself and the online host, then posed a question from the live streaming audience. “Are the phase I clinical trials effective and are they risky?” Dr. Antonia responded that patients can certainly benefit from Phase I clinical trials. These drugs have been studied and are really esteemed to be effective for patients. Talk to your doctor about this but don’t disregard trials because they are Phase I.

Dr. Carbone explained that there is an art to medicine. The art is to decide what treatment or what combination of treatments is best for any one patient.

The morning session concluded with Drs. Carbone and Antonia expressing their excitement about current and newly approved treatments for lung cancer and the hope that the disease would evolve into a chronic treatable condition in the near future.

The patient attendees then proceeded to the breakout sessions. Patients were color coded on their name badge into

One of the breakout sessions

One of the breakout sessions

newly diagnosed, diagnosed 1 year ago, diagnosed over 2 years ago and caregivers. In these breakouts, patients shared stories and thoughts about living with lung cancer. For some, this was the first time they had met another lung cancer patient. For many, this experience was an extremely important session of the meeting.

While the live audience shared stories during these breakout sessions, Carol Preston interviewed several patients, and

Carol Preston interviews Dr Scott Antonia

Carol Preston interviews Dr Scott Antonia

panelists including Drs. Carbone and Antonia exclusively for the live streaming audience.

After the break, the panel reconvened and continued the discussion of the all important topic of Living Well With Lung Cancer. Topics included communicating with the healthcare team, emotional and mental aspects of coping with lung cancer and survivorship in lung cancer. Family issues, workplace issues, fears, hopes were addressed. These emotional issues are different for everyone and everyone has their own way of coping. In the words of Cynthia, the patient has to find their “new normal”. They have to learn how they can deal with their condition.

Questions were then solicited from the audience. One patient asked if diet or exercise or lifestyle really could make a difference. Dr. Antonia replied that patients can help themselves by keeping a positive attitude. Patients can really benefit by exercise. People who stay physically active do better with treatment. Patients should keep their weight stable. Patients’ families should NOT feel sorry for the patient. Support and a positive attitude is a much better option.

The issue of supplements was raised. Dr. Carbone stated that there has been no evidence of high dose supplements having a more positive outcome on lung cancer patients. Everyone agreed that patients should discuss all supplements or vitamins with their medical team.

As I circulated around the patients during the break sessions and the lunch break, the enthusiasm and warmth was palpable. Patients were sharing stories, thoughts, ideas and support. Everyone was talking or listening intently. Everywhere, smiles were seen and laughter was heard. This was a heartwarming event. Patients were connecting with each other and were becoming empowered, educated and hopefully becoming more confident in coping with their disease.

As patients walked back to the auditorium after the break, photos were taken of these “powerful patients”. They were all smiling.

Powerful Patients!

Powerful Patients!

 

Powerful Patients!

Powerful Patients!

 

 

 

 

Spotlight on LUNGevity: Cancer and Stress

Spotlight

(Editor’s Note: LUNGevity is one of our esteemed partners. This leading organization has for mission to make “an immediate impact on increasing quality of life and survivorship of people with lung cancer by accelerating research into early detection and more effective treatments, as well as providing community, support, and education for all those affected by the disease.”)

 

Stress affects all of us in one way or another. By definition, stress is a state of mental or emotional strain or tension resulting from adverse or very demanding circumstances.

A new year presents new challenges for people on top of everyday stressors. Whatever your life challenges are, there are ways to manage your stress so that it doesn’t become harmful to your health. This is especially important for those of us who have had cancer.

Some experts say that is the link between cancer and stress—if stress decreases the body’s ability to fight disease, it loses the ability to kill cancer cells.

Stress doesn’t only make us feel awful emotionally,” says Jay Winner, MD, author of “Take the Stress Out of Your Life” and director of the Stress Management Program for Sansum Clinic in Santa Barbara, Calif. “It can also exacerbate just about any health condition you can think of.”

Stress may worsen or increase risk of obesity, diabetes, headaches, depression and heart disease as well. People fighting cancer may feel stress about what their bodies are going through, what their families are going through, uncertainty about cancer treatment, financial and emotional concerns.

Here are 5 things people who have had or are living with cancer can do to reduce their stress.

1)     Get Informed

Becoming well educated about your health conditions, treatment options and symptom management may reduce stress. While too much information may feel overwhelming to some, knowing your disease, recognizing your symptoms and where to get help for your side effects may help you feel more secure and supported in your cancer treatment.

2)     Express Yourself

Talk about how you’re feeling. Join a support group. Talk to family members and friends. For some who aren’t great talkers—write about your feelings in a journal or express yourself in artistic ways. Expressing to others about how you’re feeling may reduce tension and stress

3)     Get Moving

Exercise can help reduce stress. Activities such as walking can also help to relieve pent-up energy. For those who have physical limitations, light movement of arms and body can also help with circulation and reduce stress.

4)     Be Kind to Yourself and Others

Take breaks when you can. Eat nutritious foods, get plenty of sleep, and be kind and gentle on yourself—you deserve it.  Helping others can also make you feel good about yourself. Survivors in our LifeLine Support Program have reported that helping patients who were newly diagnosed actually helped them to feel better about themselves and what they had to go through with cancer.

5)     Ask for Help

There are resources available that can help you with practical and emotional issues surrounding your cancer. Start with your doctor and patient navigator. Sometimes an oncology social worker is the one who has a list of resources available in your area. Ask for help from family and friends who can step in to help with practical needs. If you have a hard time asking for help, designate a caregiver or advocate who can find you the help you need.

Katie Brown                                                  LUNGevity logo

Content courtesy of LUNGevity