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The Best of 2015

best of 2015


 

As 2015 comes to an end, we would like to take a moment to highlight a few of our most popular posts and to thank the people who contributed to the popularity of these posts. We cannot thank the authors enough that have contributed, such as Marie Ennis-O’Connor, Tori Tomalia, Cindy Chmielewski, Dr. Michael Thompson, Edward Leigh, and Deana Hendrickson. Your efforts to Patient Empowerment Network are greatly appreciated.

best of people

From right to left: Edward Leigh, Tori Tomalia, Cindy Chmielewski, Marie Ennis-O’Connor, and Dr. Michael Thompson

PEN would also like to thank our sponsor AstraZeneca and our partner LUNGevity for their support in creating these posts.logos


 

Most Popular Posts of 2015

1.Virtual Patient Communities

Virtual patient communities offer support and information to cancer patients.

2. The Stigma of Lung Cancer

Tori Tomalia, a lung cancer patient explains the stigma of lung cancer, and that it doesn’t happen to only those who smoke.

3. Can Digital Wearables Help in Clinical Trials?

When applied to clinical trials, wearable technology is a potentially powerful research tool to gather clinical data in real-time and provides remote patient monitoring.

4. Clinical Trials 2.0: Reinventing Research For the Social Age

Clinical research is changing. No longer the sole preserve of clinicians and researchers, the Internet and new digital technologies are reinventing the way in which patients take part in the clinical trials process.

5. Cindy Chmielewski Talks About Clinical Trials

Carol Preston talks to myeloma patient Cindy Chmielewski about her role in advocating for clinical trials. Cindy explains how her cancer journey took her to self-advocacy and advocating for others in her community through social media.

6. Why So Few Adults in Clinical Trials

Dr. Michael Thompson discusses with Carol Preston the reasons behind some patients apprehensiveness towards clinical trials.

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

What can you do in support of Lung Cancer Awareness Month

8. Activating a Community of People Living With Lung Cancer

LVNG With is a community for people living with a lung cancer diagnosis. These people share their story and help inspire others like them.

9. How to Develop a Personal Medical Resume

Edward Leigh, Founder and Director of The Center for Healthcare Communication, shares his tips for creating a “medical résumé” to ensure great healthcare experiences.

10. Connecting to Cancer Patients Online

In the Empowering Lung Cancer Patients Town Meeting, Deana Hendrickson talks about how important it is to connect with other patients and advocates online.


 

Also, be sure to check out

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The Clinical Trial Toolkit is a resource to help you find clinical trials and financial assistance. You can view our Patients Helping Patients Blog for various aspects and perspectives of clinical trials. Also, don’t miss our Videos of patients, caregivers, and healthcare professionals!

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Being Your Own Advocate

Tamara Lobban-Jones, Patient Power Producer and Lung Cancer Community Manager, and Lisa Goldman, a stage 4 non-small cell adenocarcinoma patient discuss why cancer patients need to be their own advocate.

They discuss the need for doctors and patients to communicate in new ways that respect the balance between a doctor’s expertise and patients’ own thoughts and knowledge. With the ever increasing developments in cancer research, it has become harder for oncologists to understand everything about each specialized form of a certain cancer. As Lisa points out, all that patients need to know about is their own cancer, so they can dedicate more time and energy into researching than a doctor may be able to. Being an active participant in your cancer journey is the best way to feel confident in your decision making.

Being Your Own Advocate from Patient Empowerment Network on Vimeo.

Connecting to Cancer Patients Online

Deana Hendrickson talks about how important it is to connect with other patients and advocates online. Connecting online to patients with your same disease allows you to make amazing and empowering connections. Check out the whole clip below as Deana explains:

Empowering Lung Cancer Patients Town Meeting from Patient Empowerment Network on Vimeo.

Update on Melanoma Town Meeting for Patients Live Streamed!

Screen Shot 2015-03-28 at 3.28.59 PMScreen Shot 2015-03-28 at 4.50.45 PM

Update on Melanoma: Today’s Research, Tomorrow’s Medicine was the title of the Patient Empowerment Network town meeting for melanoma patients, families and caregivers.

This meeting took place in Phoenix, AZ on Saturday, March 28th. It was live streamed (which is what I did, from my home in Charlottesville, Virginia!) and Carol Preston was a great designated host for the online audience.

The Expert Panel

The Expert Panel

The panel of experts (Dr Wong from USC Norris Comprehensive Cancer Center, Dr Patel from MD Anderson, and Dr Gimbel from Banner/MD Anderson) first discussed the disease of melanoma, its biology and the various treatments possible, including chemotherapy, biochemotherapy, targeted therapies and immuno-therapies.

All doctors agreed that there has been a vast amount of progress in melanoma. What was true yesterday is not true today. Melanoma demands a team approach of possible surgery, radiation, and the various medical therapies. And of course, all patients are different and react differently. Patients have to find the right doctor and the right treatment.Screen Shot 2015-03-28 at 1.24.43 PM

And a call to action from all doctors: melanoma is increasing. In the US, one person every hour dies from melanoma. And this number is increasing. Tell your friends and your peers. Protect your children. And everyone should have their skin checked yearly by a dermatologist.

The panel discussed clinical trials at length. All agreed that trials were a great way for patients to get the latest treatment, but they were different to find and to navigate. “There is work to be done here,” Dr Patel said. Patients should use their doctor, their provider, Patient Advocacy Groups and online sites to find clinical trials that could benefit them.

TJ Sharp and Martha Bishop, both melanoma survivors, joined the panel and spoke about their experience with clinical trials. After several attempts, they both found a clinical trial that was working for them. They are both doing well. They both spoke about their journey, how they had to really research to find the best doctor and the best treatment for them. They emphasized that patients need to be persistent and keep asking questions and finding answers. They have to look for information, understand their disease and make a conscious effort to educate and empower themselves.

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Carol Preston interviews Dr Wong

During the breakout sessions, Carol Preston interviewed both patient panelists and doctor panelists, often soliciting questions from the online audience.

In the afternoon, Rena Szabo, a psychologist at Banner/MD Anderson joined the panel and lifestyle issues were discussed. The importance of leading a balanced lifestyle and having a good support system were emphasized. TJ and Martha agreed that family, faith and hope played a large part in their cancer journey. Living each day at a time was how they got through the early days of the cancer diagnosis. Rena talked about the mind/body connection and how important it was to have a good mental attitude and good social and emotional health while dealing with cancer.

The meeting ended with a Q&A session with questions from the live audience and also from the online viewers.

Click here to see the slides from this event presentation.

Be sure and check back with us on the Update on Melanoma page to view videos from this meeting. Videos will be posted as they are edited.

 

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!

 

 

 

 

Multiple Myeloma Town Meeting at MD Anderson: Takeaways

Myeloma Meeting Nov 2

I’ve just returned from MD Anderson in Houston where I facilitated a Multiple Myeloma (MM) forum put on by the Patient Empowerment Network (PEN). The program was titled “2014: Accelerating Progress in Myeloma and What it Means for You” and attended by 225 MM patients and caregivers plus another 40 folks watching live on-line.

Drs. Robert Orlowski (MD Anderson), Gareth Morgan & Faith Davies (both at the University of Arkansas) clearly explained what MM is (including MGUS and Smoldering) and its symptoms.  Did you know in just the last month, ultra high risk Smoldering MM, which is asymptomatic and treated as “watch & wait” has been reclassified as actual Multiple Myeloma where patients should consider treatment?  These doctors summarized current treatments as well as clinical trials for new drugs and protocols, focusing on new monoclonocal antibodies as well as future patient biology testing enabling more precise treatment recommendations for a given patient.

Later in the day, our panel of doctors was joined by a myeloma nurse practitioner, social worker, and 2 patients who all shared their thoughts on how patients can monitor and plan their treatments while living well with our cancer.  We all have varying degrees of MM symptoms and treatment side effects which need to be managed by our health team, perhaps the most important member being a patient’s caregiver.

In addition to breakout meetings where patients met each other and shared experiences while asking questions, many of which were addressed by the panel, the final hour of the forum was spent answering questions from both the live and on-line audience.  Sample questions included maintenance recommendations after transplants, length of bisphosphonate (aredia or zometa) usage, and the mental issues of testing every 2 months for smoldering without starting treatment. These are difficult questions without precise answers but our doctors and other panelist shared their experiences and advice.

I have no doubt (because many told me afterwards) that this program provided a wonderful education for both myeloma patients and their caregivers.  As a 20-year survivor of MM myself, I am proud to be associated with PEN and help make such a program possible.

(The following is from the editor)

This meeting was the first PEN meeting that was live streamed using Zoom.us technology. I registered for the streaming and watched the Houston meeting from my couch in Charlottesville, Virginia. The audio and video were very clear. The video was so clear that many of the photos below were the result of screen shots that I took while streaming. I loved watching this meeting online. The reason is, that I have been to these meetings and I have talked to the participants. The patients and their families so enjoy the meetings and so enjoy hearing the experts speak and listening to the patient stories and the patient questions. How wonderful that now we have a chance for more patients to benefit from these meetings. Many patients live too far to attend these meetings in person. Many are homebound or too sick to travel. Live streaming the meetings will give those patients a chance to watch the event.

 

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