3 posts tagged “patient community”

What’s in your “chemo bag”? Gearing up for lung cancer treatment

Posted 3 months ago by

Chemotherapy is one of the most common treatments for lung cancer, so the community on PatientsLikeMe is chatting about what’s helpful to pack in a bag for chemo appointments (join PatientsLikeMe to take part in this lung cancer forum discussion).

Everyone’s experiences, side effects and preferences are different, but here are some items that people who’ve had chemotherapy say they’ve brought with them:

  • Sweatshirt and other comfy layers, in case it’s cold in the clinic (tip: a v-neck shirt and a hoodie with a zipper can offer easier access, if you have a central line or port
  • Fuzzy socks and/or close-toed shoes
  • A favorite blanket and pillow from home — although the clinic probably has these on hand, it can be nice to have your own
  • Toothbrush and toothpaste, in case you get a bad taste in your mouth (sometimes called “metal mouth”)
  • Anti-nausea aids, like ginger candy or “pregnancy lollipops”
  • Bottled water or whatever you like to drink (some people say iced green tea settles their stomach) — to help you stay hydrated and prevent dry mouth
  • Hard candy to suck on (fruity, minty or whatever you like)
  • Snacks to graze on (some clinics provide snacks, while others just provide water and coffee)… food is fine, as long as your care team hasn’t told you to fast for some reason, such as a CT scan
  • Lip balm to prevent chapped lips and mouth sores
  • Laptop, tablet or other mobile device, complete with earbuds and some entertainment (shows, movies, music, apps, or podcasts) downloaded in advance, just in case there’s not a good Wi-Fi connection available
  • A book or magazine (some people don’t feel well while looking at screens, so it’s nice to have printed copies on hand)
  • Adult coloring books and colored pencils for relaxation/entertainment
  • A journal, to help you write out some of your feelings (bonus tip: Michigan Medicine offers free guided-imagery/meditation MP3s to help people manage the emotions that come with cancer treatment)
  • A close friend or family member — someone you feel very comfortable with (and who can drive you when you’re tired after your treatments)

Learn more from these resources:

Have any ideas to add? Or just getting started with treatment? Become a member to connect with 9,000+ people with lung cancer and talk about topics like this.

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Patient-focused organizations join forces to build awareness and participation

Posted September 10th, 2013 by

The innovative medical research philanthropy Cures Within Reach has announced a marketing partnership with PatientsLikeMe to work together to improve patient lives.

Sep. 10, 2013 – SKOKIE, Ill — Cures Within Reach, a non-profit focused on research to repurpose existing compounds for new and immediate use, and PatientsLikeMe, a patient network and real-time research platform, are both thinking out of the box to help patients get what they need in today’s challenging healthcare climate.

Cures Within Reach (www.cureswithinreach.org) is dedicated to saving lives of patients with both complex and rare conditions by sourcing, funding and stewarding research that repurposes FDA-approved drugs, devices and nutriceuticals.  Anecdotally described as “teaching old drugs new tricks,” companies and research institutions rarely embrace this methodology due to low profit potential, while the potential for creating effective and affordable cures or treatments for patients is very high.  Ideas for these projects come from researchers, clinicians and sometimes patients themselves.

PatientsLikeMe® (www.patientslikeme.com) is a patient network that improves lives and a real-time research platform that advances medicine. Through the network, patients connect with others who have the same disease or condition and track and share their own experiences. In the process, they generate data about the real-world nature of disease that help researchers, pharmaceutical companies, regulators, providers, and nonprofits develop more effective products, services and care.

The initial partnership will consist of cross-marketing programs to drive awareness and participation.  “Cures Within Reach is leading the way in a unique research model that makes a tangible difference for patients today.  We are happy to connect with an organization whose work so directly supports our patient community,” says PatientsLikeMe Executive Vice President of Marketing and Patient Advocacy Michael Evers.

Dr. Bruce Bloom, President and Chief Science Officer of Cures Within Reach, shares that moving forward, CWR will “find collaborations with PatientsLikeMe and their powerful patient community that not only increase awareness, but also ultimately strengthen each organization’s research work and patient impact.”

To learn more about PatientsLikeMe, visit www.patientslikeme.com

To learn more about Cures Within Reach, visit www.cureswithinreach.org