3 posts tagged “forum discussion”

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

Posted May 18th, 2018 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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Lupus flares: Stats and infographics based on the PatientsLikeMe community’s experiences

Posted December 18th, 2017 by

Lupus flares are hard to define. In fact, there wasn’t a clear clinical definition of flares until 2010 (and even that definition is pretty broad).

If you’re living with lupus, how would you define a flare? What do you experience during one? To gain a deeper understanding of flares from the patient perspective, the PatientsLikeMe research team partnered with Takeda Pharmaceuticals to study our online community’s discussions and data related to flares. Check out these graphics that show some of the key findings about flares among patients with systemic lupus erythematosus (SLE), the most common form of lupus.

A mix of symptoms

Below are the five symptoms researchers spotted most frequently in SLE forum posts about flares. Other flare symptoms mentioned in the forum include: nausea, fever/flu, lupus fog, hair loss, migraine, back pain, blood pressure, bloody nose, insomnia, mental health effects, panic, rib pain, skin sensitivity, swollen glands, weakness, weight gain, lower GI, face tumor, hives, infection, vasculitis, and voice effects.

“I was really flaring…”

PatientsLikeMe researchers say that a flare is “a cluster of symptoms which usually includes pain and fatigue, at a minimum.” But the specifics may vary: Everyone describes their flares — and their duration — differently. Here are just a couple of the forum posts researchers highlighted.

Living with more than lupus

“…and then I had a flare of lupus, RA and Sjogren’s that still has not gone away,” one member wrote in the forum. Many members who’ve discussed their flares have also shared which other conditions they’ve been diagnosed with in addition to lupus.

If you’re living with lupus, how would you describe what happens during your flares? How long do they tend to last? Do you have other conditions that make your flares worse or hard to identify? Share your experiences here, or — even better — join PatientsLikeMe to learn from and connect with nearly 30,000 people living with lupus.

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