United On International Women’s Day

What Is It?

International Women’s Day (March 8) is a global day celebrating the social, economic, cultural and political achievements of women. The day also marks a call to action for accelerating gender parity.

International Women’s Day (IWD) has been observed since in the early 1900’s – a time of great expansion and turbulence in the industrialized world that saw booming population growth and the rise of radical ideologies. No one government, NGO, charity, corporation, academic institution, women’s network or media hub is solely responsible for International Women’s Day, but it works to bring those organizations together.

InternationalWomensDay-landscape

#BeBoldForChange is this year’s theme – a call on the masses or call on yourself to help forge a better working world – a more inclusive, gender equal world. Let us  know what you are doing for International Women’s Day this year in the comments section!

This is a great day to:

  • Celebrate the social, economic, cultural and political achievements of women because visibility and awareness help drive positive change for women
  • Declare bold actions you’ll take as an individual or organization to help progress the gender agenda because purposeful action can accelerate gender parity across the world

Why It’s Needed?

According to The Telegraph, a British newspaper, “The original aim – to achieve full gender equality for women the world – has still not been realised. A gender pay gap persists across the globe and women are still not present in equal numbers in business or politics. Figures show that globally, women’s education, health and violence towards women is still worse than that of men.” The World Economic Forum predicts the gender gap won’t close entirely until 2186. This is too long to wait. So around the world, International Women’s Day provides an important opportunity for ground breaking action that can truly drive greater change for women.

[su_quote cite=”Ayn Rand”]The question isn’t who is going to let me; it’s who is going to stop me.[/su_quote]

How Your Lifestyle Can Affect Genes That Cause Cancer

There are two schools of thinking about cancer.  School one says that cancer is a hereditary disease, passed from generation to generation.  A good example of this are women who possess the BRCA1 and BRCA2 gene mutation.  Women with this mutation have a 70% lifetime risk of developing breast and/or ovarian cancer.  Angelina Jolie, for example, lost her mother and aunt to cancer and was subsequently found to have the same mutation.

The second school says that cancer can occur due to lifestyle choices.  A good example of this is cigarette smoking. It is the number cause of lung cancer, linked to 80 – 90% of lung cancer cases.

Recently, researchers at the Boston University School of Medicine have introduced another theory about the development of cancer.  They proposed that there are processes within our cells that activate certain sequences of DNA.  Those processes act as on/off switches for the development of cancer.

This idea is based on the evolving science of epigenetics. Epigenetics looks at the way genes express or don’t express themselves as we age.  Those gene changes are thought to be influenced directly as a result of our nutrition and behavior, as well as exposure to toxins in our environment.  In a sense, it’s a hybrid of hereditary disease and lifestyle choices.

Epigenetics is a normal process in our bodies.  For example, all of our DNA is the same, yet cells develop into liver cells, brain cells, muscle cells, etc. because of the way epigenetics turns on and off different cell processes.  But our lifestyle choices can impact the way genes express themselves as well.

Perhaps you’ve heard the expression “Sitting is the new smoking.”  The reason for this is due to research on lifestyle and cancer.  The results of dozens of surveys found that a sedentary lifestyle increases the risks of cancer, specifically colon cancer.  Subjects who spent most of their day sitting were 24% more likely to get colon cancer.  People who watched the most television had a 54% greater risk than those who watched fewer hours.  Uterine cancer was also affected by sitting; women who were the most inactive experienced a 32% great risk.  The female T.V. watchers fared worse; those who watched the most television has a 66% risk of developing uterine cancer.

In all these cases, it’s not the inactivity per se that causes cancer to develop.  It’s the processes of epigenetics that are affected by inactivity that can cause cancer.

It’s a complicated and exciting time.  Next month, more on how unhealthy habits are incorporated into our DNA and passed onto our children.


Sources:

https://blogs.scientificamerican.com/guest-blog/lifestyle-choices-could-affect-gene-sequences-that-code-for-cancer/

http://www.nature.com/scitable/topicpage/epigenetic-influences-and-disease-895

http://www.whatisepigenetics.com/fundamentals/2/

How to Weigh Up the Benefits and Risks of Treatment…and Why It’s Important That You Do

Do clinicians have accurate expectations of the benefits and harms of treatments and screening tests?

new study in JAMA Internal Medicine concludes not. In a systematic review of 48 studies (13 011 clinicians), the researchers found that clinicians rarely had accurate expectations of benefits or harms, more often underestimating harms and overestimated benefits. Among the findings, obstetricians and neurologists underestimated the risk of birth defects from anti-epileptic drugs and GPs overestimated the benefit of prostate cancer screening. Transplant surgeons were biased towards an inaccurately low estimate of graft failure and all types of doctors were unaware of the risk of radiation exposure from imaging.

What do these findings mean for patients? Inaccurate clinician expectations of the benefits and harms of interventions can profoundly influence decision making and the standard of care patients receive. Patient activist, blogger, and author of the upcoming book “Heart Sisters: A Survivor’s Take on Women and Heart Disease” (Johns Hopkins University Press, November 2017), Carolyn Thomas, believes this to be “a consistently systemic issue for patients, too: most believe medical interventions will help more/harm less than they actually do”. It’s a wake-up call for patients who have a critical role to play in understanding and weighing up benefits and risks for ourselves, in order to get better treatment. And it’s a further reminder of the importance of shared decision making to reach a healthcare choice together, as opposed to clinicians making decisions on behalf of patients.

However, understanding the risks associated with a treatment is not necessarily straight-forward. The challenge for busy clinicians is that there isn’t always the time to read and digest the latest research to inform their practice. Medical commentator, physician, and cancer survivor, Elaine Schattner, believes that because medical knowledge changes so rapidly it’s hard for clinicians to keep pace. “This may be especially true in oncology,” she points out, “as patients become expert in their own conditions and needs, they may prefer to look up information on their own, and share their findings with their physicians.”

A lengthy article published this month in ProPublica, examines what it calls “an epidemic of unnecessary and unhelpful treatment” requested by patients and delivered by doctors, even after current research contradicts its practice. “It is distressingly ordinary for patients to get treatments that research has shown are ineffective or even dangerous”, writes David Epstein. “Some procedures are implemented based on studies that did not prove whether they really worked in the first place. Others were initially supported by evidence but then were contradicted by better evidence, and yet these procedures have remained the standards of care for years, or decades.” Epstein points to a 2013 study which examined all 363 articles published in The New England Journal of Medicine over a decade — 2001 through 2010 — that tested a current clinical practice. Their results, published in the Mayo Clinic Proceedings, found 146 studies that proved or strongly suggested that a current standard practice either had no benefit at all or was inferior to the practice it replaced. Of course, this is not to say that myriad treatments don’t indeed improve and save lives, but it’s important to ask questions and do your own research before making a decision on which treatment is the best for you.

Start by asking your doctor to explain all the treatment options open to you, including what would happen if you do nothing. Recognise that all treatments are inevitably associated with some risk of possible harm. Ask your doctor to quantify that risk beyond a purely descriptive term, such as “low risk” (what your doctor considers a small and acceptable risk may be unacceptable to you). Next, do your own research. In order to make an informed decision, you will need to gather reliable information on which to base your choice. Fully exploring the risks and benefits of treatment involves doing your own evidence-based research (using evidence from medical studies that have looked at what happens to many thousands of people with your condition). In a previous article, I shared with you some helpful guidelines for assessing medical information. Most media reports about the benefits of treatments present risk results as relative risk reductions rather than absolute risk reductions, so you will need to understand the difference. Absolute risk of a disease is your risk of developing the disease over a time period. We all have absolute risks of developing various diseases such as heart disease, cancer, stroke, etc. Relative risk is used to compare the risk in two different groups of people. For example, research has shown that smokers have a higher risk of developing heart disease compared to non-smokers. Ask your doctor to differentiate between absolute and relative risk. Check out the NNT website which provides non-biased summaries of evidence-based medicine. “NNT” stands for a statistical concept called the “Number-Needed-to-Treat” – as in “How many patients need to be treated with a drug or procedure for one patient to get the hoped-for benefit?” The core value of the NNT is its straightforward communication of the science that can help us understand the likelihood that a patient will be helped, harmed, or unaffected by a treatment. It provides a measurement of the impact of a medicine or therapy by estimating the number of patients that need to be treated in order to have an impact on one person. Because we know that not everyone is helped by a medicine or intervention — some benefit, some are harmed, and some are unaffected, the NNT tells us how many of each.

You may also want to hear about what other people with your condition have chosen to do and what their experience has been. But remember that just because something has/hasn’t worked for someone else, it doesn’t mean it will/won’t work for you. Orthopedic surgeon, Dr Nicholas DiNubile, recommends patients ask their doctors, “If this were you, or one of your immediate family members, what would you do and/or recommend?” While this may be useful, you must ultimately decide what benefits and risks are important to you. Can you tolerate the side-effects? Are you happy with the way the treatment is administered? Would you find it stressful to live with the risk of any serious side effects, even if the risk is small? What matters is whether you think that the benefits outweigh the risk of any side effects. Everyone is different. The treatment recommended for you may not be the best treatment for your particular lifestyle. Being an advocate for your own health care involves asking lots of questions, doing your own research, and making your preferences known to your doctor. By doing this, you will be better informed and in a stronger position to get the treatment that is right for you.


Related Reading
Clinicians’ Expectations of Treatments, Screening, and Test Benefit and Harm
The three questions that every patient should ask their doctor
Strategies to help patients understand risks

Reducing Your Risk of Cancer

The American Institute for Cancer Research (AICR) estimates that approximately one-third of cases of the most common cancers in the U.S. could be prevented, which accounts for about 374,000 cases of cancer per year. Cancer prevention is action taken to lower the chance of getting cancer therefore reducing the burden and deaths from cancer each year. Since February is Cancer Prevention Month, we wanted to highlight some ways to reduce your risk and protect yourself from cancer.

1. Eat a healthy diet & Stay active

Eating a balanced plant-based diet filled with a variety of vegetables, fruits, soy, nuts, whole grains, and beans can help lower your risk for many types of cancer and will help you maintain a healthy weight.

Adults should get et at least 150 minutes of moderate intensity or 75 minutes of vigorous intensity activity each day (or a combination of these), preferably spread throughout the week. While children and teens are recommended to get at least 1 hour of moderate or vigorous intensity activity each day, with at least 2.5 hours of moderate intensity aerobic activity each week.

2. Protect yourself from the sun

Sun exposure at any age can cause skin cancer. Be especially careful in the sun if you burn easily, spend a lot of time outdoors, or have any of the following physical features:

  • Numerous, irregular, or large moles
  • Freckles
  • Fair skin
  • Blond, red, or light brown hair

To block UV rays try covering-up, wearing sunscreen, wearing a hat, using UV-absorbent shades, and limiting you exposure time.

3. Get immunized

The human papillomavirus (HPV) vaccine helps prevent most cervical cancers and several other kinds of cancer, and the hepatitis B vaccine can help lower liver cancer risk.

4. Avoid risky behavior

Another effective cancer prevention tactic is to avoid risky behaviors that can lead to infections that, in turn, might increase the risk of cancer. Some behaviors to avoid:

  • Excessive alcohol consumption
  • Tanning beds
  • Tobacco use
  • Unsafe sex
  • Sharing needles

5. Get regular medical care and screenings

Along with regular check-ups with your physician to maintain an open health dialogue, cancer screenings should also be scheduled. These include the following:

  • Pap smear – Most women ages 21 to 65 should get Pap tests as part of routine health care. Even if you are not currently sexually active, you should still have a Pap test
  • Colonoscopy – Colon cancer screening should begin at age 50 for most people. If a colonoscopy doesn’t find adenomas or cancer and you don’t have risk factors, the next test should be in ten years.
  • Mammogram – Women should should get mammograms every year starting at age 40, for as long as a woman is in good health
  • Checking skin for irregular moles, etc.

Sources:

https://www.cdc.gov/cancer/dcpc/prevention/

http://www.mcancer.org/cancer-prevention

http://www.mayoclinic.org/healthy-lifestyle/adult-health/in-depth/cancer-prevention/art-20044816

https://www.osha.gov/Publications/OSHA3166/osha3166.html

Patients as Partners Conference

We are pleased to announce that we will be attending our parter, The Conference Forum’s, Patients as Partners US Conference this March in Philadelphia, PA. We are looking forward to hearing from leaders in the industry, meeting with colleges, and learning how to incorporate the patient perspective.

The 4th Annual Patients as Partners US is the only conference putting the patient voice on the same level as industry and government in finding solutions to engage and empower patients in the clinical trial process. It is co-produced with patients, industry, academia, government and nonprofit organizations to establish a well-rounded program that addresses the needs of all stakeholders seeking to implement and advance patient involvement across the entire clinical development continuum. Join us and  get 15% off using our discount code PEN15 >> http://theconferenceforum.org/conferences/patients-as-partners/overview/. We hope to see you there!

If you cannot attend, please follow along as we will be live tweeting this exciting event! (@power4patients) Tweet us and let us know what you are interested in hearing or learning about!

Register using our coupon code PEN15 for 15% off!

Patients as Partners Event History

When this question was asked to our Disrupting Clinical Trials (DPharm) audience seven years ago, no one raised their hand. Immediately we saw the need for a conference on service for patients in clinical trials. However, more importantly, we saw the urgent need for the patient perspective in driving a conference on collaborating in clinical research.

What Patient Research Taught Us

Patients taught us empathy not only with their disease, but with their lifestyle and struggles in finding and experiencing a clinical trial. In particular, we learned the need to:

  1. Understand and incorporate the patient’s voice in designing clinical trials and developing a clinical endpoint.
  2. Vastly improve the patient’s entire experience in a clinical trial.

If it were not for patient research, we would not have an event 100% designed for the benefit of the patient.

We look forward to seeing you at the 4th annual Patients as Partners US this March 2-3.

Register using our coupon code PEN15 for 15% off!

Patients in Clinical Trials or Patient Advocates Needing Scholarships,
Contact Us at service@tcfllc.org

Accredited by 

#Patients2017 organized by:

Please do not reply directly to this email. Contact onalee@tcfllc.org with any inquiries.

Event overview: http://theconferenceforum.org/conferences/patients-as-partners/overview/
Event press release: http://www.prweb.com/releases/2017/01/prweb14018129.htm
Event hashtag: #Patients2017
TCF Twitter handle: @ConferenceForum

 

Tweetchats: What Are They? How Can I Participate?

A Tweetchat or a Twitter Chat is a live event where a group of Twitter users come together to discuss a predetermined topic. To sift through all of the world’s tweets a designated hashtag (#) is used for each tweet contributed to the conversation. Each chat has a set start time, time limit, and a host that moderates.

The moderator asks questions to prompt responses from the participants and helps get the conversation going/moving along. Cues are usually used such as T1, T2, and T3 for topics or Q1, Q2, and Q3 for questions 1 through 3 to provide context and clarity to both questions and responses. To participate in the chat, all you have to do is include the hashtag in your tweet. Websites such as tchat.io can help by filtering out all other tweets so you can focus on discussing one topic and it automatically adds the hashtag to your tweets.

Now that you understand the basics, you might wonder why you should participate. This type of platform allows you connect with a larger group of patients or experts who understand and know first hand what you are going through. In addition to the social connection benefits, tweetchats can be educational. You can learn about different treatment options, clinical trials, etc. You can find a list of all the different healthcare tweetchats here.

References:

http://www.forbes.com/sites/stevecooper/2013/09/30/the-ultimate-guide-to-hosting-a-tweet-chat/#28c902e364b3

https://blog.bufferapp.com/twitter-chat-101

Lung Cancer Clinical Trial Awareness

Interview with Jennifer C. King, PhD, Director, Science and Research, Lung Cancer Alliance

 

The Lung Cancer Alliance (LCA) is the oldest and leading non-profit organization dedicated to saving lives and advancing research in the field of lung cancer. LCA advocates for research funding and reimbursement to patients for treatment for lung cancer. They offer nationwide educational campaigns to educate and support lung cancer patients, families and caregivers. LCA’s website contains a great deal of information about the biology of lung cancer, types of lung cancer, lung cancer research, lung cancer treatments including managing side effects, clinical trials for lung cancer and treatment centers.

LCA also offers a great deal of support for lung cancer patients and families. They have a HelpLine, a “Phone Buddy” program, a “Guides” program for families and caregivers and a “LCA Unite” mobile app for iPhone and Android:  that helps connect patients to one another, offers 24/7 support via live chat and offers local resources, including support groups and treatment centers.

Jennifer C. King, PhD is the Director of Science and Research for the Lung Cancer Alliance. Jennifer is responsible for leading scientific and research initiatives that improve the lives of lung cancer patients and those at risk for lung cancer

I talked with Jennifer about her role at LCA and what her perspectives were on clinical trial awareness and patient participation.

Jennifer explained that LCA is focused on patient support, information and referral services for lung cancer patients and caregivers. Located in Washington DC, they work with policy-makers to help promote awareness and increase survivorship for lung cancer. Jennifer is working on increasing the LCA research portfolio, building an in-house research staff, partnering with other organizations and the LCA Screening Centers of Excellence. Historically, LCA has not funded research directly but has worked extensively with other organizations to that end, including the development of the first ever Lung Cancer Research Program within the Department of Defense.

LCA currently offers patients information on finding clinical trials by working with the Lung Cancer Clinical Trial Matching Service powered by EmergingMed. This service allows patients to work with a Clinical Trial Navigator who creates a list of appropriate trials and then emails or mails them directly to the patient.

LCA also offers information on clinical trials and questions to ask when considering a clinical trial. They also have a brochure, Understanding Lung Cancer Clinical Trials that can be printed or downloaded.

I asked Jennifer how patients and patient advocacy groups can do their part to help promote awareness about clinical trials and she replied, “Talk about it! Everyone needs to be talking about it and helping to spread the word. Patients need to talk about trials with their medical team early in their treatment discussions. Providers need to offer trials to patients. Patients need to know what questions to ask. Doctors need to have the information to answer patient questions.”

Jennifer emphasized that caregivers are a critical audience. She added, “Caregivers are often the ones going online and doing the research.” These caregivers need support and information also. Patient advocacy groups need to include them actively in the discussion and offer them the information they need.

I asked Jennifer what information, support or program she thought was the most effective in succeeding in increasing patient awareness in trials. King answered that it was critical to have diverse programs and types of support and information in order to reach different groups of people. “There are many different demographics within the lung cancer patient population. It takes a lot of different programs to reach everyone. So many of our programs interplay with each other and having different ways to reach different audiences is really critical.”

If you are a lung cancer patient or the caregiver, family member or loved one of a lung cancer patient, please visit the Lung Cancer Alliance website. They have a great deal of useful and helpful information available. And please reach out to those in your lung cancer community who are not so tech-savvy and help them, so that they can take advantage of all the resources available. Less tech-savvy patients and caregivers are also encouraged to call LCA’s HelpLine where they can speak to someone directly who can answer questions and provide support.

Impatient Patients

The recent ASH (American Society of Hematology) meeting in Orlando focused on a host of new therapies for blood cancers and possible combinations of these new drugs that could forge paths to cures.

Leukemia, myeloma and lymphoma patients are grateful for the research and dedication from medical experts from around the globe.  But as I learned from talking to several, patients also are impatient. So they are taking action to move the research needle faster toward blood cancer cures.

David Wallace

David Wallace

David Wallace was diagnosed in 2009 with polycythemia Vera, an MPN or myloproliferative neoplasm.  He struggled to find precise, relevant information about PV, so he launched PV Reporter.  PV Reporter started as a hobby but has grown into a full-time endeavor.  David is educating thousands of patients and care partners about PV, namely that indeed it IS a cancer.  He said many patients are told PV is not a cancer, and they miss the opportunity to participate in clinical trials as well as programs to help fund peripheral needs such as transportation to and from the trial site.  David recently launched <mpncancerconnection.org> to complement PV Reporter.  David’s message:  If you have doubts about your diagnosis, find another doctor now, at a major research center if possible!

Then there is a Jenny Ahlstrom.  Jenny’s been a multiple myeloma patient since 2010, nearly two years after her 6th child was born.  Jenny founded <myelomacrowd.org> which not only educates MM patients on the latest advances, but also is raising money for research to treat high risk myeloma. Jenny’s message to patients: Toward that end, Jenny has raised more than $150,000 (!) toward a goal of 1/2 million dollars (!) to fund two game-changing projects which harness the body’s immune system to knock back the disease.  Jenny’s message to us patients:  We patients CAN and SHOULD accelerate the pace of research toward a cure.  Want to do more than wait? Go to <myelomacrowd.org> to fund the research that will save lives.

Pat Killingsworth with Carol Preston

Pat Killingsworth with Carol Preston

Pat Killingsworth shouldn’t be alive.  Pat over nine years burned through multiple myeloma therapies faster than fire burns through paper.  A very somber Pat told me at ASH 2014 that he’d reached the end of the treatment road.  And yet there he was at ASH 2015-bald, thin, wearing a mask and SMILING after not one but two autologous (using his own stem cells) transplants! Read Pat’s story at <myelomablog.com>  Pat became ill after this year’s ASH, probably too many germs to combat at the Orlando Convention Center, but then a ‘miracle.’ The transplants worked. Pat was declared myeloma-free.  Pat is the model for never giving up, never taking ‘no’ for an answer and pushing back hard against adversity through education and action.  His will to live far outran the potentially lethal ravages of multiple myeloma.

Finally, Jack Aiello.  Many of you know Jack as a 21-year multiple myeloma survivor.  Through failed therapies, transplants and more treatments, Jack beat the odds. He survived MM when most patients died from it. Jack has turned his good fortune into activism.  He constantly learns about new therapies and, through the International Multiple Myeloma Foundation, educates patients to fight their disease.  Why work so hard for others when you’ve already beaten the disease?

"When I was dx'd, I wondered if I'd be alive to see my kids graduate from high school. And now I have 4 grandkids. What could be better?"

“When I was dx’d, I wondered if I’d be alive to see my kids graduate from high school. And now I have 4 grandkids. What could be better?”

These four delicious grandkids, including the newest Aiello born this month, came into Jack’s life long after his diagnosis.  Imagine if Jack hadn’t fought through the very difficult trials of treatment?

These four stories are but a smattering among hundreds – from patients who aren’t treading water and simply hoping for a cure.  They are the activists who are partnering with researchers to make it happen.  In their and our lifetimes.

Carol Preston was diagnosed with CLL in 2006, in remission for 5 1/2 years.

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!

 

 

 

 

First Day at ASH 2014: Thoughts and Takeaways

First Day at ASH14 – Thoughts and Takeaways

Friday was the first day of ASH14, the annual American Society of Hematology conference, taking place this year at Moscone Convention Center in San Francisco. The actual program starts on Saturday but Friday was marked by several Patient Advocacy meetings and presentations.

The feeling is, among the patient advocates, that the patient voice is gaining strength but must get stronger still. Patient advocates from Germany, Switzerland, France, Israel, Brazil and many more countries met and discussed issues common to all countries. All hoped for a synergistic approach to patient empowerment and support. Topics discussed were how to improve doctor/patient communication, how to screen for reliable information on the internet, forming partnerships between patient organizations to gain reach and strength,

Some key tweets today reflect topics that will be talked about tomorrow:

 

Learn how discoveries in RNA bio & immunology contribute to novel therapies at 2 special scientific symposia

Find out how high drug costs influence treatment adherence, quality of life & overall health at the Symposium on Quality

FDA approves Blincyto to treat a rare form of acute lymphoblastic leukemia

FDA approves Ruxolitinib for the treatment of patients with Polycythemia Vera

Stay tuned!