Hope Summit LIVE – A Powerful Event for Powerful Patients
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.
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.
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.
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
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
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.