933 posts in the category “Openness”

“Chemo brain”: 3 surprising findings from recent research

Posted July 19th, 2018 by

“Chemo brain” — the term for cognitive problems associated with chemotherapy treatment — appears to be very common, but doctors only started paying attention to it in the late 1990s.

2012 study that finally helped elevate chemo brain as a serious and widespread issue estimated that up to 75% of breast cancer survivors experience “cognitive deficits—problems with attention, concentration, planning, and working memory—from 6 months to 20 years after receiving chemotherapy.” Read on to learn some of the surprising findings from recent research on chemo brain.

1. Treatments beyond chemotherapy may cause chemo brain. “From many sources of data, we now know patients experience impairments not just after chemo, but after surgery, radiation, hormonal therapy,” and other treatments, oncologist Patricia Ganz, M.D., tells the National Cancer Institute. Immunotherapy may also cause cognitive dysfunction, according to MD Anderson Cancer Center.

2. Cancer itself may cause some chemo brain. A 2015 study found that people with lung cancer have mental impairments and changes in their brain even before treatment. For example, patients with non-small cell lung cancer (NSCLC) had “verbal memory deficits” (e.g., trouble remembering words) and damage to the brain’s white matter (which some consider “the subway of the brain”). A 2017 animal study also showed that cancer itself can impact the brain, possibly because the body’s response to cancer can cause inflammation to the brain.

3. Chemo brain is often so subtle that standard tests can’t detect it. Just last month (June 2018), researchers issued a call for a new clinical approach to chemo brain, as reported in the Los Angeles Times. One of the main problems? Experts have mainly tried to assess chemo brain using neurological tests geared toward those with severe brain injuries, Alzheimer’s disease or stroke. But tests like those are “unlikely to detect, measure or explain the often subtle impairments that, for many cancer survivors, make it hard to return to a mentally demanding job, continue driving or lay plans for the future,” The Times notes.

Can anything help with chemo brain symptoms?

“Stimulants or brain training may help some patients,” the team at MD Anderson says. “Cognitive strategies or healthy lifestyle changes, like improved sleep quality and exercise, can also help.” Talk with your care team and ask for a referral to a neuropsychology specialist. (If you’ve tried any treatments or therapies for cognitive symptoms, please make a comment below.)

Join PatientsLikeMe today to find dozens of conversations about chemo brain and see the most commonly reported side effects of chemotherapy.

Share this post on Twitter and help spread the word.


2018 National ALS Advocacy Conference: A recap from Team of Advisors members Rich & Paul

Posted July 17th, 2018 by

Last month, Rich and Paul from this year’s Team of Advisors attended the 2018 National ALS Advocacy Conference in Washington D.C. to learn about the latest ALS research, network, and meet with members of congress on Capitol Hill. Just over 600 people attended the event, including 100+ pALS and 240 first-time participants.

The event started on Sunday with opening remarks followed by an afternoon session, reception, networking dinner and entertainment. Paul and Rich had the opportunity to share with pALS about PatientsLikeMe. Read on to learn how it went and what they accomplished.

(front row: Holly Crowder, Stacy Crowder, Kathy Tavano, Team of Advisors member Paul and Tanner Hockinsmith from the ALSA; back row: Stephen Reynolds from Senator Cronyn’s office)

Day 2: Research & Policy
  • Opportunities to participate in research: Rich (and other participants) gave saliva samples to the Centers for Disease Control (CDC) and blood to the National Institutes on Health (NIH).
  • Interview with Rich: Rich spoke about the ALS Registry Taskforce that exists to brainstorm and come together to find ways to increase participation.
  • Public Policy sessions: These sessions included time to prepare for the visit to Capitol Hill, a Congressional Panel with bipartisan Congressional staff and remarks from US Senator Bill Cassidy.
  • Interview with Pat Quinn: Pat Quinn, the Ice Bucket Challenge co-founder spoke about a new voice generating software and platform.
  • Research panel: Lucie Brujin, John Landers and Tody Ferguson held a panel discussion on where we are in ALS research, and what is coming in the pipeline.
  • Closing remarks/strategy: Following the closing remarks, attendees had time to strategize with state chapters. Paul and Rich’s chapter (the ALS Association FL Chapter) was represented by 17 people including:
  • 2 pALS, caregivers, family members, friends, the President of the ALS Association chapter in Florida and 3 researchers

 

(Tim Cummings (surviving spouse of ALS patient, former board president of ALS association FL chapter), Dorothy Marsh (who lost her sister to ALS), Martin Rivera (Rep. Darren Soto’s office), Team of Advisors member Rich, Talitha, and Rich’s daughter, Gigi.)

Day 3: To the Hill

Rich, Paul and the other members of their chapter headed to Capitol Hill to meet with senators, representatives and their staff.

Their mission?

The Taskforce of advocates asked U.S. Senators and Representatives to gain support for:

  1. The senate and house bills dealing with the ALS Disability Assurance Act. Passage of this bill would eliminate the 5-month waiting period for Medicare.
  2. Continued funding $10M for Department of Defense (DOD) ALS research
  3. CDC funding $10M for the National ALS Registry
  4. Continued NIH funding for $39.3B
  5. Support for Steve Gleason to receive the Medal of Freedom award

They met with congressmen and their staff including:

  • The offices of Senators Marco Rubio and Bill Nelson and Representatives Darren Soto, Al Lawson, John Rutherford and Ted Yoho.
Were they successful?

“There is no way to know for sure but based on questions asked by the people we met with and the notes taken we felt our mission was successful,” Paul said.

While getting support for “Right to Try” wasn’t officially part of the mission, they did discuss the topic with many of the staffers they met. Representatives Lawson, Rutherford and Yoho all voted in favor of the legislation a few weeks later.

Going forward, Rich and Paul plan to follow up with the congressmen (and their staff) to make sure their asks are met.

Want to get involved with ALS advocacy? On PatientsLikeMe, more than nearly 700 members of your community say they’re interested in advocacy — Join today to connect with others who want to make a difference.

Share this post on Twitter and help spread the word.