Cancer

“I have learned and grown from this and now I want to help others” — Iris shares her story for Ovarian Cancer Awareness Month

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September is Ovarian Cancer Awareness Month, so we caught up with member Iris (Imartinez) to find out what living with this condition is really like. Iris opened up about getting diagnosed at just 28 years old, the challenges of her treatment journey and her passion for riding her motorcycle. For Iris, attitude is everything: “Having a POSITIVE mindset, I believe, makes a big difference.” Here’s what else she had to say…   Tell us a little about yourself. What are your hobbies and passions?   I’m an outgoing young adult who enjoys motorcycles! Since my diagnosis everything about me changed. My hobbies, my way of thinking, how I view life. One thing that has not changed is my passion for motorcycles. When I gain my strength back and summer comes back around that will be one of the main things I’ll be doing! I was a very selfish and materialistic person before my journey. Now that I have endured a long eight months of treatments, my hobbies and passions have changed. I enjoy reading about others who are going through a tough time and offering an ear or hand to help. I want to share my story to help others and …

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PatientsLikeMe and M2Gen Announce Partnership and Plans for Landmark Cancer Experience Study

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  CAMBRIDGE, Mass. & TAMPA, Fla., March 8, 2016—Patient network PatientsLikeMe® and informatics solutions provider M2Gen® are collaborating to give patients and researchers a more complete picture of patients’ experiences with cancer treatments and to shed new light on the factors that may affect outcomes and quality of life. The partnership aims to advance cancer research by combining real-world, patient-reported outcomes shared by members of PatientsLikeMe with the molecular and clinical data shared by patients enrolled in the Total Cancer Care® program at Moffitt Cancer Center and The Ohio State University Comprehensive Cancer Center – Arthur G. James Cancer Hospital and Richard J. Solove Research Institute (OSUCCC – James). The combined dataset will give researchers a broader, longitudinal view of the many factors that affect patient outcomes. The collaboration’s initial study is expected to kick off within the next several months and to focus on lung cancer. Researchers will analyze and explore the typically distinct forms of data to generate new insights into the patient experience and value of treatment plans for those undergoing care. The study is funded by PatientsLikeMe partners AstraZeneca and Genentech, a member of the Roche Group. “As we continue to expand our real-world measurement system, …

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Leaning on loved ones—An interview with lung cancer member Clare

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When Clare (Riverdale) was diagnosed with non small-cell lung cancer, her husband was already living with prostate cancer. While supporting each other through chemotherapy and radiation, the couple has made an effort to eat healthy and keep up the active lifestyle they led before. We recently connected with Clare, who emphasized “the value of a loving mate” in her experience with lung cancer. Tell us a little bit about yourself. I am 73 years old, grew up on a farm in Alberta. My father smoked a pipe and used to joke about turning the air blue. No one else in the family got cancer. I smoked starting at age 20 while studying for exams, trying to stay awake, then continued as people who smoked got a coffee break and those who didn’t smoke really didn’t get a break. I continued to smoke less than a half a pack a day till age 28, then thanks to Nicorette gum stopped easily, as did my husband. We are very physically active. I rode my bike several miles to my job — weather- permitting — as we have great bike lanes and didn’t live too far from the center of the city. We …

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Meet Peggy from the PatientsLikeMe Team of Advisors

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Say hello to Peggy, another member of your 2015-2016 PatientsLikeMe Team of Advisors. A survivor of both kidney cancer and Stage II breast cancer, Peggy believes that most of us are “ill-prepared to be ill,” and that better health education can lead to better outcomes. After years of teaching and volunteering, patient advocacy has come naturally to Peggy. She’s determined to teach others about their treatment options, and writes a blog covering new studies. Her goal is to empower patients to approach their doctors with more confidence. Here, Peggy touches on how she overcame survivor’s guilt and the challenges of navigating the healthcare system. What gives you the greatest joy and puts a smile on your face? In front of me is a bulletin board of picture, heavily featuring my two young grandchildren and a few of my own five children. The sheer joy of seeing my family grow up is in sharp contrast to the realization I could have missed it all, had I not had excellent care of my kidney cancer. In gratitude for what had been given me, and in appreciation for the sacrifices others had made, I am determined to teach others about their kidney cancer …

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We can. I can. Start talking about cancer.

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Every February 4, all corners of the world unite in the fight against cancer on World Cancer Day (WCD). What’s the purpose? To get as many people around the globe talking about a disease that continues to claim 8.2 million lives every year.[1] How can you get involved? Every action counts and the more people out there making noise – the better. Enough awareness and education urges people to take action and can save lives. This year marks the start of a three-year campaign for reach and impact under the tagline, “We can. I can.” You can start talking by sharing one of the ready-made tweets on their site, add your WCD activity on the map of impact, support WCD’s “Talking Hands” on social media, join the WCDThunderclap campaign, download sharable materials and more. And don’t forget to share your awareness efforts and experience with cancer in the PatientsLikeMe forum. #WeCanICan, together. Share this post on Twitter and help spread the word. [1] http://www.worldcancerday.org/about

Meet David from the PatientsLikeMe Team of Advisors

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We’d like to introduce you to David, another member of your 2015-2016 PatientsLikeMe Team of Advisors. David has been living with Stage IV lung cancer for four years and hopes to be an inspiration to other cancer patients. He has worked to raise awareness for his condition as a political advocate for the NGO Lung Cancer Alliance. And as a retiree, he stays active by cycling, gardening and baking bread. Here, David stresses the importance of forging a strong partnership with his care team and reflects on what he calls “some of the best years of my life.” What gives you the greatest joy and puts a smile on your face? Knowing at the end of a day that my time was spent wisely and productively. To me this means, like any other person, I have accomplished one or more tasks that are important to me. As a retiree each accomplishment mostly orbits around my avocations that include (1) road cycling (2) gardening or working in my greenhouse (3) baking artisan bread (4) photography and (5) traveling. Each avocation reinforces my emotional well-being and belief that despite having a terminal disease (Stage IV Lung Cancer) I can live like any …

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“I had no idea that my thyroid controls so much” — PatientsLikeMe member Barbara shares her experience for Thyroid Awareness Month

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January is Thyroid Awareness Month. So, how much do you know about the small, butterfly-shaped gland that influences the way your heart, brain, liver, kidneys and skin function? To help spread #thyroidawareness, we asked member Barbara to tell us about living with thyroid cancer and hypothyroidism, a condition that affects over 6,000 PatientsLikeMe members. Barbara shares how her thyroid issues have taken an emotional toll on her, as well as some advice on being your own advocate: “Fight for your right to feel normal again.” Tell us a little about yourself. What are your hobbies and passions? I really love photography and a new passion is gemstones. I have been taking photos since I was a kid.  I love landscapes and different and interesting people. I still have several film cameras but I love the freedom of digital. I enjoy video and web design as well. I have gotten the opportunity to study gemstones and it has opened up a big new world. I am currently studying how to identify gemstones. It is like being a detective.  There are so many different types. Learning their origins has been fascinating. I also love watching Kung Fu movies with my husband. When you were diagnosed, what went through your mind? My diagnosis was a little odd. …

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#CervicalHealthMonth: Member Laurie opens up about living with cervical cancer

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Every year, more than 12,000 women in the U.S. are diagnosed with cervical cancer. And every January, the National Cervical Cancer Coalition (NCCC) kicks off Cervical Health Awareness Month. In honor of #CervicalHealthMonth, we asked Laurie (lroz57), who joined PatientsLikeMe in 2012, to tell her story. Laurie was given a 50/50 chance of survival when she was diagnosed back in 2003, and endured a difficult treatment experience. Here’s how she describes it: “I was diagnosed on 12/18/2003 with Stage 3B cervical cancer. The tumor was as big as a tennis ball, and in the vaginal wall. I had 28 ext. radiations, 2 int. radiations and 3 low-dose chemo treatments. Talk about burns! Now I have more radiation damage than I thought possible. But as I tell people, ‘I’m alive!’” Throughout it all, Laurie has committed to staying positive and active — bicycling, exercising at the YMCA and volunteering for the National Patient Advocate Foundation. As for her experience on PatientsLikeMe, she shares, “I love connecting with others in my position. You never know what you might learn.” If you’re living with cervical cancer, the NCCC has lots of ways to get involved, including a #CervicalHealthMonth twitter chat on January 12. …

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“I am not a quitter, I never have been” – An interview with lung cancer member Jacquie

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For Jacquie (Jacquie1961), a business owner and entrepreneur from New Mexico, 2013 was the worst year of her life – she’d lost two beloved pets to old age and then was diagnosed with lung cancer, which soon turned into colon cancer. After rigorous chemotherapy and the adoption of a new dog, Roman, Jacquie joined PatientsLikeMe this past September and has been sharing her positive, never-back-down attitude with the rest of the community. We took time to connect with her recently and this is what we learned… Tell us a bit about your life. After a long career of juggling my own real estate firm and landscaping company, I decided to obtain my esthetician’s license in 2011. In late 2012, I opened a spa for skincare. It was in 2013, as I was building up my new business, that I got my first diagnosis of lung cancer. What I didn’t know was that I also had cancer in my colon that went unnoticed by the first oncologist I had. I was getting sicker by the day, losing more weight, but no one even did any blood work on me or examined me for five months. I asked about chemo and was …

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Shining a light on lung cancer

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What began as one awareness day back in November of 1995 has grown into Lung Cancer Awareness Month, now in its 20th year, as the lung cancer movement expanded and activities increased. Lung cancer is the second most common cancer in both men and women, but is the leading cause of cancer death in the United States.[1] Although the risk of developing lung cancer is highest in smokers (about 90%[2]), many people who do not smoke develop lung cancer each year. Luckily, there are plenty of ways for you to get involved and help spread lung cancer awareness throughout the month of November – and year-round. Shine a Light on Lung Cancer: This year’s 7th annual global event, hosted by Lung Cancer Alliance, is taking place on November 5, and is largest coordinated awareness event for lung cancer in the U.S. The lighting of the flashlights in local communities honors survivors and loved ones, and provides hope, inspiration and support for everyone touched by lung cancer. Find the Shine a Light on Lung Cancer event near you! Do your part in fundraising for a cure: Participate in the event of your choice, on your own or with family and friends, …

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