Cancer

“In my own words” – PatientsLikeMe member Vickie shares about her experiences with lung cancer

Meet Vickie, a PatientsLikeMe member who has survived cancer not once, but twice. She’s sharing her story, from diagnosis to survivorship, during Lung Cancer Awareness Month. She spoke about her reaction to getting diagnosed, the anxiety filled months leading up to surgery and what recovery was like post-operation. Learn about her journey below. The journey Occasionally I received cards in the mail offering discount lung or heart screenings. I think most people do now and then. I always throw them in the trash. In May 2012, I received one. For some reason I didn’t throw that one away. I called and scheduled an appointment for the heart and lung scan. Was told I’d get a letter in two weeks letting me know the results. Imagine my surprise when 4 days later I received a voice mail asking me to call the hospital back as soon as possible. With feelings of dread and fear, I returned the call. Was told they were concerned about 2 places in my left lung. Was cautioned to not jump to any conclusions. They could be any number of things. I needed to have testing done. Was scheduled for MRI and PET Scan. Those results were …

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PatientsLikeMe launches “24 Days of Giving” to encourage sharing of health data for good

Napkin Notes Dad Garth Callaghan Joins Campaign Calling on People to Donate Health Data Starting on Giving Tuesday CAMBRIDGE, Mass. (November 17, 2014) – On December 2, PatientsLikeMe will launch a new campaign that will extend through the month and ask people to rethink their giving this year. PatientsLikeMe is calling on patients who are living with a chronic condition to donate their health data after donating to their favorite non-profit on Giving Tuesday. The December campaign, officially branded “24 Days of Giving,” asks patients to simply share their health data for good. To do so, they can create a profile on PatientsLikeMe and start tracking their symptoms, treatments and quality of life. By sharing this data on the site, patients not only help themselves, but help others who can learn from their experiences, and advance research. “Our members have learned how to live better day-to-day and have contributed significantly to medical research,” said Michael Evers, PatientsLikeMe’s Executive Vice President of Marketing and Patient Advocacy. “We hope more will consider sharing their health data for their own, and the greater, good.” At PatientsLikeMe, health data includes information about a disease or condition—how people live with it, what their doctors are doing to treat it, and …

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Out of the Office: PatientsLikeMe team spreads the word for Lung Cancer Awareness Month

Hi all! I’m Kara, a member of the Community team at PatientsLikeMe and the moderator for our lung cancer community. November is Lung Cancer Awareness Month, and what better way to kick it off than to join a fantastic group in raising awareness for this often overlooked condition. Along with some fellow PatientsLikeMe staffers — and little Hugo, our French Bulldog mascot for the day — I recently had the pleasure of walking at the LUNGevity Foundation’s ninth annual Breathe Deep Boston 5K Walk on Nov. 1, 2014. Rain and winds couldn’t keep us away from Carson Beach in South Boston that Saturday morning as we laced up our sneakers to join Boston area survivors and families as they walked to show their support for those living with lung cancer and honor loved ones who are no longer with us. Bill Shields, WBZ-TV reporter and Boston area resident, emceed the event. Shields is a lung cancer survivor himself and shared his personal story with the crowd. By far, the biggest highlight of our day was hearing the many touching stories, whether it was Shields or other advocates speaking to the crowd, survivors sharing stories huddled over hot cocoa or loved …

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LUNGevity Foundation and PatientsLikeMe Unite for New Partnership

Organizations Team Up to Enhance Patient Network for People Living with Lung Cancer, Expand Reach for Research Washington, DC (October 30, 2014) – Today, LUNGevity Foundation, the leading lung cancer nonprofit, and PatientsLikeMe, the leading patient network, announced a joint initiative to help people diagnosed with lung cancer. The organizations are collaborating to increase the number of lung cancer members on PatientsLikeMe so that more patient-reported information can potentially guide research on the condition. LUNGevity will also continuously provide information on lung cancer to enrich PatientsLikeMe’s content, and in the longer term, will become the first nonprofit to integrate and display dynamic data from PatientsLikeMe on its own website. PatientsLikeMe is a unique tool that helps individuals living with lung cancer to learn from others. Members can gain a real world understanding of lung cancer treatments and symptoms, track their condition, and contribute health data for research. “Our work with LUNGevity aims to create the premier lung cancer registry in the world, and to make a lasting impact on research and on those who live with the condition every day,” said PatientsLikeMe Executive Vice President of Marketing and Patient Advocacy Michael Evers. The initiative will provide a complementary information-gathering resource …

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Think pink- breast cancer awareness

Everywhere you look during October, you’re probably seeing some pink for National Breast Cancer Awareness Month. But it’s about more than just a color; it’s about helping women now by promoting early detection through regular mammograms and working to help those already diagnosed with breast cancer understand the journey ahead. According to the National Breast Cancer Foundation (NBCF), breast cancer is the most commonly diagnosed cancer in women, and every year, over 220,000 women in the United States will learn they are living with it. It’s not just limited to women, though. Over 2,000 American men will be diagnosed as well. But the earlier breast cancer is caught, the more treatable it is. Learning about proper screening methods (including self-exams and mammograms) and the genetic and environmental risk factors associated with breast cancer can really make a difference. So this month, think pink to help spread awareness and share about your experiences with the #BreastCancerAwareness hashtag. If you’ve recently been diagnosed with breast cancer, check out Beyond the Shock, a huge online resource organized by the NBCF that includes videos on everything from the basics of breast cancer to treatment options and coping methods. And don’t forget there are more …

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“Hope won’t make it happen” – PatientsLikeMe member Phil shares about her experiences with lung cancer

That’s Phil’s (PhillyH) personal motto in life – “hope won’t make it happen.” She’s a PatientsLikeMe member who hails from Northampton in the United Kingdom and was diagnosed with lung cancer in 2012. Ever since then, she’s been learning to live with the ups and downs of her condition. She recently shared her experiences in an interview with us, everything from the reaction she had after her blunt diagnosis to her treatment decisions and son’s new tattoo. Phil also shared her thoughts on what every person who has just been diagnosed with lung cancer should know. As she says, “If you don’t know, you can’t do” – read below to learn about her lung cancer journey. When you were diagnosed with lung cancer in 2012, what was going through your mind? My first reaction was defense. Somehow I had to deflect the enormity of what I had been told. I was so disappointed, I had been prepared for pneumonia. After all I felt well, wasn’t sick, wasn’t losing weight, still doing everything I had always done. I was so very angry about the way the doctor gave me the news. Before I had even sat down she bluntly announced “well it’s not good news.” I’m …

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PatientsLikeMe and Cancer Treatment Centers of America Eastern team up to support survivors

Online Network Connects Patients, Offers Valuable Information and Tools CAMBRIDGE, Mass.—October 8, 2014—PatientsLikeMe and Cancer Treatment Centers of America (CTCA) at Eastern Regional Medical Center (Eastern) have joined forces to help ease patients’ transitions from cancer treatment to survivorship. The collaborative effort is designed to give patients undergoing or completing treatment direct access to a powerful online network for daily support, information and tools. Offering a comprehensive, fully integrated approach to cancer treatment, CTCA at Eastern sees patients from around the world. “Since so many of our patients are from out of town, it’s incredibly important that we connect them with resources that extend their support and care when they go back home,” said Vice President of Marketing John Goodchild. “PatientsLikeMe will be an important addition to what we do and a way for our patients to not only get great support and services, but to contribute data that could prove valuable for future cancer research.” PatientsLikeMe’s Executive Vice President of Marketing and Patient Advocacy Michael Evers said CTCA at Eastern and its clinicians will be helping patients access one of the most powerful and active patient networks online. “Our members share information about how they’re managing their condition and …

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Every three minutes

That’s how often a person is diagnosed with blood cancer in the United States, according to the Leukemia and Lymphoma Society (LLS). This means that 156,420 Americans will be diagnosed in 2014, and hundreds of thousands more worldwide. But that’s just the start of what everyone can learn during National Blood Cancer Awareness Month. Check out the Lymphoma Research Foundation’s (LRF) video below: Did you know there are actually three main types of blood cancer? Each affects a different kind of cell in your body and can vary greatly:1 Leukemia is found in your actual blood and bone marrow, and it causes abnormal white blood cells to form and disrupt the normal immune system. Lymphoma affects your lymph nodes and lymphatic organs, which are the parts of the immune system that remove excess fluid from the body and produce special white blood cells. Myeloma is the cancer that is limited to plasma cells, which are cells in your blood that help produce antibodies and fight disease. There are many subtypes of these three categories, including conditions like chronic lymphocytic leukemia, non-Hodgkin’s lymphoma and multiple myeloma, to name a few common ones. This month, get involved by participating in a Lymphomaton …

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Ovarian cancer – taking early action

Do you know why teal is the official color for Ovarian Cancer Awareness Month? It’s an acronym for Take Early Action and Live. This September, we can all do our part to help people understand what it’s like to live with this condition, including spreading awareness and education for early signs and symptoms. In 2014, the American Cancer Society (ACS) predicts over 20,000 women will be diagnosed, and more than 14,000 others already living with ovarian cancer will die from complications. Here are the straight facts about ovarian cancer from the ACS: 1 in every 73 women will be diagnosed with ovarian cancer at some point in their lives. Ovarian cancer ranks 5th in cancer deaths among women. The lifetime chance of passing away from ovarian cancer is 1 in 100. If you’re in the area, you can attend one of the National Ovarian Cancer Coalition’s (NOCC) many events this autumn, and you can also share the TEAL poster on social media. And if you’re living with ovarian cancer, you can also connect with other women like you in the PatientsLikeMe community. Share this post on Twitter and help spread the word for ovarian cancer.

Early – regularly – recommended: all for Cervical Health Awareness Month

If you follow our blog, you’ve probably noticed that we post a bunch about awareness months, weeks and days. It’s part of our mission to bring a bit more attention to what’s going on out there and how you can get involved. This will be our first awareness post for 2014, and it’s for National Cervical Health Awareness Month. Cervical cancer is the second most common cancer for women in the world. According to the National Cervical Cancer Coalition (NCCC), more than 12,000 women in the U.S. are diagnosed with cervical cancer each year, and more than 4,000 will die from complications.1 But there is a silver lining – it’s one of the most preventable types of cancer, especially if signs or symptoms are caught early on. In fact, the cases of and deaths from cervical cancer have recently decreased significantly because of regular pap smears and health checks. From 2000 to 2009, the instance and mortality rate of cervical cancer in women decreased by 2 percent every year.2 If you’re a woman between the ages of 20 and 70, the NCCC recommends getting screened regularly and taking a human papillomavirus (HPV) test if your doctor suggests it. HPV is …

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