836 posts in the category “Conditions”

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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Spill the beans: How do caffeine and Parkinson’s disease interact?

Posted May 14th, 2018 by

Do you crave that cup (or more) of joe each day? Or a spot of tea or chunk of chocolate? Research about caffeine and Parkinson’s disease (PD) has been all over the map. What have studies shown? And what’s the PatientsLikeMe community’s take on caffeine and its effects when you’re living with PD? Take a peek.

Mixed findings on symptom relief

Past research showing that moderate caffeine intake may help protect against PD (particularly in men) has turned on a steady drip of studies about other caffeine/PD connections or interactions.

A small-scale 2012 study published in the journal Neurology found that moderate amounts of caffeine may help improve motor symptoms of Parkinson’s disease. But the study was relatively short (three weeks) and small (61 patients), so researchers concluded that there should be a larger long-term trial on caffeine and PD.

The lead researcher, Ronald Postuma, M.D. (an associate professor of neurology at McGill University Health Center in Montreal), conducted a follow-up study on a larger scale — involving 121 participants for up to 18 months — and the results of the September 2017 study did not uphold the findings of the 2012 study.

“Caffeine made no difference to Parkinson’s,” he says, noting that the results of the 2012 study made a bigger splash than intended. “The news media picked it up, and all of a sudden I’ve got all of my patients drinking coffee, which I never intended,” Dr. Postuma tells WebMD. “We always have to verify things.”

New findings on caffeine as a biomarker

Another recent caffeine/PD study that’s created a buzz is one published in January 2018 in Neurology that shows caffeine could be a biomarker of PD, meaning it could be a possible predictor or diagnostic blood test down the road, if more research pans out.

In the Japanese study involving 139 people (men and women, both with and without PD), those with Parkinson’s disease had significantly lower levels of caffeine and related byproducts in their blood, even when consuming the same amount of caffeine (the equivalent of about two cups of coffee per day).

But the study also had limitations, including the fact that people with severe PD weren’t a part of the research, and all participants were taking PD medication (so these drugs could possibly affect caffeine metabolism).

The Michael J. Fox Foundation called the study’s findings “very intriguing” and is reportedly working on a “rapid replication” of the research.

What’s the takeaway from all this research?

The Parkinson’s Foundation sums it up like this: “The bottom line from all of the available research is that the epidemiologic link between caffeine and a potential lower risk of developing Parkinson’s disease is not likely related to a symptomatic effect. If you have Parkinson’s, drinking coffee will not worsen your symptoms, in most cases… Consumption of coffee or tea seems to reduce the risk of developing Parkinson’s. Once you have been diagnosed with Parkinson’s disease, no matter how much time you spend in a coffee shop, you can no longer alter your risk profile.”

Among the general population, drinking coffee appears to have at least a few health perks. Nutrition experts at Harvard University say that, in addition to lowering the risk for PD, drinking coffee appears to protect against type 2 diabetes and liver cancer, and it’s generally a good beverage choice for healthy people (as long as it’s not loaded with fat/cream and sugar, interrupting sleep, or causing tremors — which can occur even in healthy people who consume too much caffeine).

Keep in mind that caffeine levels vary by brand and type of drink (for example, espresso and mocha drinks contain more). Talk with your health care team about your caffeine intake, timing with medications, and any symptoms you think may be associated with it.

Join PatientsLikeMe today to connect with others on topics like this (logged-in members can access the following links)! See what members with PD are saying about:

Some members have found that caffeine makes their tremors worse, while others say they’re not sure how it affects them (and besides, they’ll never give up their “morning joe”). A few have mentioned that they’ve tweaked their routine — having a bit of coffee only after they’ve taken their medication.

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