Cancer

PatientsLikeMe Names 2015-2016 Team of Advisors, Sets Focus on Redefining Patient Partnerships

Cambridge, MA, October 19, 2015—PatientsLikeMe has named 14 members to its patient-only 2015–2016 Team of Advisors and challenged them to work through an issue that’s central to everyone in the healthcare system: how to redefine patient partnerships. The team will be focused on rethinking what it means for patients to be partners, and on establishing new ways for the healthcare industry to connect with patients to deliver better care. PatientsLikeMe CEO Martin Coulter said that in an era when patients must be front and center in healthcare discovery and development, the group’s mission is vital to every patient, pharmaceutical company, regulator, payor and provider. “This advisory team includes some of the strongest patient advocates we have ever met. Their experience can empower other patients, and help those serving patients understand what it means to be a good partner. The team’s work will help create a stronger foundation for a more equal and participatory system of care. More than 1,400 PatientsLikeMe members submitted applications for this year’s Team of Advisors. Those selected represent a range of medical and professional backgrounds and ages. The nearly equal mix of men and women are living with a cross-section of conditions, including amyotrophic lateral sclerosis …

PatientsLikeMe Names 2015-2016 Team of Advisors, Sets Focus on Redefining Patient Partnerships Read More »

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 …

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

“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 …

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

MARCHing together for myeloma awareness

There’s a lot of awareness going on in March. So far, we’ve learned more about sleep conditions (how pain can increase sleep debt), multiple sclerosis (the myths and facts) and brain injury (how it might be more common than you think). Today, we’re shining a spotlight on myeloma, a type of blood cancer that affects more than 750,000 people worldwide.1 You can add to your knowledge during Myeloma Awareness Month (MAM), and educate your friends and family about the condition. Awareness is contagious. Here are the basics about myeloma: Myeloma is the second most common blood cancer in the world It begins in plasma cells (white blood cells that are part of the immune system) and eventually collects in bone marrow When myeloma collects in more than one location in the body, it is called “multiple myeloma” Common symptoms include bone pain, anemia and extreme fatigue It’s estimated that over 24,000 new cases of myeloma were diagnosed in 2014.2 For these people and everyone living with myeloma, here’s how you can get involved in raising awareness: Change your Facebook or Twitter picture to the Myeloma Awareness Month social media badge Share on social media via the #DiscoverMyeloma hashtag – for every …

MARCHing together for myeloma awareness Read More »

“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 …

“Not beyond us” – Recognizing World Cancer Day Read More »

“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 …

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

What do you know about cervical cancer?

January is Cervical Health Awareness Month, but it’s not just a month to learn more about cervical cancer, it’s about learning how to prevent it. Since the 1950s, there’s been in increased effort to raise awareness for prevention screening, and from 1955 to 1992, the cervical cancer incidence and death rates declined by 60 percent.1 But there’s still work to be done, as the NIH estimates that over 12,000 women will still be diagnosed with cervical cancer in 2015.1 Our own Priya Raja spoke about cervical cancer awareness on the blog about a year ago, and she stressed the importance of Pap smears and making them available to all women around the world. During January, the awareness focus will be on preventative screening as well as cervical cancer itself, because as Priya said, “being screened just once can reduce the likelihood of having cancer.” You can learn more by checking out the National Cervical Cancer Coalition’s website and the Center for Disease Control and Prevention’s infographic on cervical cancer (featured to the right). And if you’ve been recently diagnosed with either HPV or cervical cancer, reach out to others like you in the PatientsLikeMe community. Share this post on Twitter and …

What do you know about cervical cancer? Read More »

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 …

2014 recap – a year of sharing in the PatientsLikeMe community Read More »

PatientsLikeMe and USF Health collaborate to empower cancer patients

Partnership Marks the First Between the Patient Network and an Academic Health Center CAMBRIDGE, Mass.—December 4, 2014—PatientsLikeMe and the USF Health Internal Medicine Department have partnered to improve health outcomes for multiple myeloma patients. People living with multiple myeloma and other cancers will be directed to PatientsLikeMe to access patient-reported symptom and treatment information and connect with others to guide their treatment discussions and decisions. The partnership is PatientsLikeMe’s first with an academic health center. The companies will exchange and publish information on multiple myeloma on their websites and work collaboratively with PatientsLikeMe members to continuously enhance the health and education of people living with the condition. The organizations also expect to collaborate on specific research initiatives in the future. USF Health, an integral part of the University of South Florida (USF), is a partnership between USF’s health-related colleges and schools and the USF Physician’s Group. “It is an honor as a cancer physician and scientist to become part of a larger community of patients with multiple myeloma,” said Damian Laber MD, Hematology/Oncology division chief at USF and senior member at Moffitt Cancer Center. “This partnership enables patients and their families worldwide to receive the most relevant and current medical …

PatientsLikeMe and USF Health collaborate to empower cancer patients Read More »

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 …

Shining a light on lung cancer Read More »

Scroll to Top