lung cancer

New partner, Schwartz Center, calls for nominations: National Compassionate Caregiver of the Year

Remember a time when you were in the hospital or doctor’s office, feeling nervous and anxious about a shot, treatment or diagnosis? And remember there was someone who made you feel safe, answered all your questions, or did something small that had a big impact? It’s like what Ken Schwartz said during his battle with lung cancer, “These acts of kindness – the simple human touch from my caregivers – have made the unbearable bearable.” Those experiences inspired Ken to create an outline for an organization to promote compassionate care so that patients and their caregivers can relate to one other in a way that provides hope to the patient, support to caregivers and sustenance to the healing process. And just days before his death in 1995, he founded the Schwartz Center for Compassionate Healthcare. For 16 of the last 20 years the Schwartz Center has been honoring extraordinary professional caregivers and teams who embody characteristics of compassionate care, like listening carefully, showing empathy, instilling hope and more. We’re proud to be partnered with them in their continued efforts. And you can be a part of it, too. The Schwartz Center is calling for nominations for its National Compassionate Caregiver …

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“I am not alone in this” – PatientsLikeMe member Rikwood55 shares his journey with lung cancer

New member (and New Zealander) Rikwood55 was diagnosed at age 58 with non-small cell lung carcinoma (stage 4), and he said he joined PatientsLikeMe in the hope of connecting with people on the same or similar lung cancer immunotherapy treatments. Rick took part in a clinical trial, and is now tolerating the immunotherapy treatment well. His scans are looking good, and he sums it up this way: “Five rounds of Carboplatin Chemo was hard going, as it is for everyone. Now more stability has returned and with it, hope for the future.” Read Rick’s interview below and share your own experiences. Tell us a little bit about yourself, Rick. I am Rick, and I was diagnosed at age 58 with NSCLC stage 4 metastasis. I am a New Zealand-born resident currently receiving immunotherapy treatment in a clinical trial every 3 weeks at Auckland Hospital. I have received 14 treatments to date. Scan results have been good and I am tolerating the treatment well. I have joined PatientsLikeMe in the hope of connecting with people on the same or similar lung cancer immunotherapy treatments. Please, no clinical specific info, which would in any way compromise study results. Let’s talk about living day to …

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“Not beyond us” – Recognizing World Cancer Day

The Union for International Cancer Control (UICC) has organized today, February 4th, as World Cancer Day. This year’s theme: “Not beyond us.” It’s about highlighting that solutions to cancer are within our reach. Awareness is not beyond us. Prevention is not beyond us. And a cure is not beyond us. The UICC is encouraging everyone to take a positive and proactive approach in the fight against cancer by working towards these four goals: Choosing healthy lives Delivering early detection Achieving treatment for all Maximizing quality of life You can become part of the World Cancer Day effort and raise awareness about what needs to be done. Whether it’s at an individual, community, governmental or global level, you can help in the fight. Visit the World Cancer Day website to learn how to get involved. On social media, you can use the hashtags #WorldCancerDay and #NotBeyondUs to share your story Add to the World Cancer Day online Map of Events and activities, and share what you’re doing on World Cancer Day Share one of the World Cancer Day 2015 posters What are PatientsLikeMe members sharing about their journeys with cancer? PatientsLikeMe member Glow4life was diagnosed with lung cancer (adenocarcinoma) this past June, and …

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“Strength will come, somehow, from somewhere” – PatientsLikeMe member Glow4life shares her journey with lung cancer

PatientsLikeMe member Glow4life was diagnosed with lung cancer (adenocarcinoma) this past June, and her story is a testament to never losing hope. She recently shared her experiences in an interview, and she spared no details in describing her challenges. Despite her terminal diagnosis, four rounds of chemotherapy and the sudden loss of her husband, Glow4life has remained positive, and she’s learned to take every day as it comes and live in the moment. Learn about her journey below and how she shares love and hope whenever she can. How did you react after getting diagnosed with lung cancer in 2013? What was the diagnosis process like? I had a routine X-ray in February 2013, after attending A & E with chest pains (which turned out to be nothing). A few days later I received a letter asking me to return in 6 weeks for a follow up X-ray, as there was a suspect area, probably scarring from a previous chest infection but best to check. My general practitioner reassured me it was unlikely to be sinister, if cancer was suspected I’d be looked into immediately. I thought no more about it and returned for the repeat X-ray as scheduled. The following …

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2014 recap – a year of sharing in the PatientsLikeMe community

Another year has come and gone here at PatientsLikeMe, and as we started to look back at who’s shared their experiences, we were quite simply amazed. More than 30 members living with 9 different conditions opened up for a blog interview in 2014. But that’s just the start. Others have shared about their health journeys in short videos and even posted about their favorite food recipes. A heartfelt thanks to everyone who shared their experiences this year – the PatientsLikeMe community is continuing to change healthcare for good, and together, we can help each other live better as we move into 2015. Team of Advisors In September, we announced the first-ever PatientsLikeMe Team of Advisors, a group of 14 members that will work with us this year on research-related initiatives. They’ve been giving regular feedback about how PatientsLikeMe research can be even more helpful, including creating a “guide” that highlights new standards for researchers to better engage with patients. We introduced everyone to three so far, and look forward to highlighting the rest of team in 2015. Meet Becky – Becky is a former family nurse practitioner, and she’s a medically retired flight nurse who is living with epilepsy and …

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Shining a light on lung cancer

Back in 1995, a few organizations came together to recognize Lung Cancer Awareness Day – there were a few awareness activities and some scattered fundraisers. Fast forward to now. Almost 20 years later, over 125 different lung cancer events are spread across three continents during the month of November. This is Lung Cancer Awareness Month, and the Lung Cancer Alliance (LCA) wants you and everyone you know to help shine a light on this pulmonary condition. Here is some information you might not know, and can tell others about lung cancer: In 2014, over 220,000 new people will be diagnosed with lung cancer1 Lung cancer is the most common cancer among both men and women Lung cancer is the leading cause of death among every ethnic group, and the second leading cause of death in the U.S.2 Almost 80% of those diagnosed are former or non-smokers We got a jump-start here at PatientsLikeMe. Right on November 1st, some on the team joined in the LUNGevity Foundation’s ninth annual Breathe Deep Boston 5K Walk. They’re a new partner of ours, and together, we’ll be collaborating to increase the number of lung cancer members on the site so that more patient-reported information …

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“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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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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“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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