Why isn’t glioblastoma, the cancer John McCain had, more successfully treatable?

The news that Sen. John McCain decided to discontinue treatment for glioblastoma and died on Saturday from it had us wondering about the survival rates of this cancer and the treatments.  McCain was diagnosed in July 2017 after surgeons removed a blood clot above his eye.

We asked Dr. John Kuo, the chair of the department of neurosurgery at Dell Medical School and the surgical director of the Mulva Clinic for Neurosciences, about this form of brain cancer and the advances in treatments that have been made.

It’s a very rare cancer, Kuo says, even though it’s been in the news recently because of McCain’s diagnosis and the diagnoses and deaths of Bo Biden, Vice President Joe Biden’s son, and Sen. Teddy Kennedy.

Sen. John McCain has decided not to continue treatment for glioblastoma. Alex Wong/Getty Images 2017

Cancers that originate in the brain affect only about 7 or 8 people out of 100,000. We don’t know what causes glioblastoma, though. It’s not linked to known outside factors like smoking, and it’s not genetic, Kuo says.

Unlike other cancers in the brain that originate somewhere else, glioblastoma begins in the brain in support cells called astrocytes (they look like stars). Astrocytes support and surround neurons. Glioblastoma infiltrates the brain, Kuo says.

In other cancers, you can cut out the tumor and a margin of healthy cells around it. In glioblastoma, “you can’t do that in the brain safely,” Kuo says. “The nature (of glioblastoma) is the cells left behind are likely embedded and invaded in the brain. That’s why it’s incurable.”

Typically, doctors will try to surgically remove as much as they can do safely. Sometimes, depending on where it is in the brain, they might not be able to remove much.

Then patients get radiation to the remaining cavity and the surrounding region.

Then they get a new chemotherapy in the form of a pill that was show in 2005 to make a difference in the survival rates for six to 12 months. Doing all three — surgery, radiation and chemotherapy — gave people a 5 percent survival rate in the first five years.

Now, an innovative treatment developed in Israel has extended that from 5 percent to 13 percent when added to those three, Kuo says. It’s called tumor treating fields. Doctors place grids on a shaved scalp and using electricity and magnetic fields, they disrupt cells as the cells are dividing. Using tumor treating fields now has FDA approval.

With glioblastoma, Kuo says, the younger the patient is the better treatment tends to work.

The median length of survival once diagnosed is about 15 to 18 months, Kuo says, which means that half the people will live that long, half will not.

Dr. John Kuo

While 5 or 13 percent survival rate in five years, might not sound like a lot, Kuo is seeing improvements in everything related to glioblastoma. Surgeons are able to do better surgery, more safely using microscopes, GPS mapping and fluorescence to see where the cancerous cells are. They also have better radiation techniques, new chemotherapies and innovations like tumor treating fields.

He also believes that eventually immunotherapy treatments that look at the biology of that person’s specific cancer cells will be applied to glioblastoma. “I hold a lot of promise and hope that research will help us beat this,” Kuo says.

“People think very dismally of this and pancreatic cancer,” Kuo says. “There’s a lot of research going on in this and that carries over to other cancers. We’re really hoping to make dents in this in quality and length of survival. There’s hope.”

 

 

Shopping for back to school this tax-free weekend? Pick up diapers for Austin Diaper Bank

Tax-free weekend is almost here. Friday-Sunday, you can get most clothing and school supplies tax-free. That’s an 8.25 percent savings.

You know what you can also get? Diapers, both ones for babies and ones for adults.

RELATED: What’s tax-free this weekend and what’s not

The Austin Diaper Bank needs your diapers. AUSTIN AMERICAN-STATESMAN 2016

The Austin Diaper Bank would be happy to have your donation. Right now, they particularly need size 5 and size 6, but they’ll take any size diapers and they’ll take ones for adults, too.

“While diaper donations slow during the summer, the need does not,” said Holly McDaniel, executive director of the Austin Diaper Bank, in a press release. “If we can’t replenish some of our supplies, some of our neighbors in Central Texas may not get the diapers they need to keep babies or other family members clean, dry and healthy during these hot months.”

You can drop diapers off at these locations:

Whole Foods Downtown (Outdoor Bin)
525 N. Lamar Blvd.
Austin, TX 78703

AustinBorn
5555 N. Lamar Blvd. Suite C127
In PS Business Park

Austin Diaper Bank Warehouse (Outdoor Bin)
8711 Burnet Road, back of Building B, 78757

BabyEarth (Outdoor Bin)
106 E. Old Settlers Blvd.
Just east of I-35 in Round Rock
Store hours: M-Sat 9-8 and Sun 11-6

Big Sky Pediatric Therapy
9433 Bee Caves Road, Suite 101
Near Laura Bush Library at Cuernavaca
Store hours: M-F 8-5

College Nannies + Tutors
3736 Bee Caves Road, Suite 3
In Walgreens shopping center
Store hours: M-Th 10-8, F 10-4, Sun 11-4

Dance Xplosion
9600 Escarpment Blvd. Suite 750
By Starbucks
Store hours: M, T, TH, F: 9-12, 3-7, W: 3-8, Sat. 8:30-12:30

Evans Family Dental
9001 Brodie Lane
Right behind Jet’s Pizza
Hours: M-Th 7:30-4

Just4Kids
101B Pecan Street W.
In Pflugerville
Store hours: M-Sat 10-7 and Sun 12-6

Kid to Kid Austin
14010 N. U.S. 183, Suite 420
By Barnes and Noble and Texas Land and Cattle
Store hours: M-Sat 10-7 and Sun 12-5

Special Addition
7301 Burnet Road
Across from Ichiban
Store hours: M-Fri 10-6 and Sat 10-5

Wells Branch Community Library
15001 Wells Port Drive
Austin, TX 78728
Hours: M-Thurs 10-8, Sat 10-6 and Sun 1-6

If you don’t want to mess with the stores, you also can shop the bank’s Amazon wish list. 

Find out more about the bank at www.austindiapers.org.

Shark Week, African safaris and more family adventures in Austin, July 27-29

With temps hovering around 100 this weekend, it might feel like a break from the 108 earlier this week. What will you do with the kids this weekend?

Check out our list:

FRIDAY

Teen Turn Up. Teens ages 11-17 enjoy teen parties all summer long at Austin’s recreation centers. Pool Palooza, 6-9 p.m. Friday, Dittmar Recreation Center, 1009 W. Dittmar Road. austintexas.gov

Elizabeth Kahura will be at the Toybrary Austin for an African Safari program. RODOLFO GONZALEZ / AMERICAN-STATESMAN

Toybrary Austin African Safari Programs. Folk tales, drumming, dancing, singing and more. 10:30 p.m. Friday, $12 per child. Toybrary Austin, 2001 Justin Lane. toybraryaustin.com

Blanton Museum. This is the final week for the Blanton’s children’s programs. Deeper Dives for ages 8-10, 10 a.m. Friday; Free Diving for ages 11-14, 1 p.m. Friday. Blanton Museum. 200 E. Martin Luther King Jr. Blvd. blantonmuseum.org

Music at the Austin Public Library. The Telephone Company. 2 p.m. Friday, Yarborough Branch.

Teen Videogame Free Play. 2 p.m. Fridays, Central Library.

Lego Lab. 3 p.m. Friday, Cepeda Branch.

Art Smart “We Read” Community Mural Project. 1 p.m. Friday, Pleasant Hill Branch.

It’s Shark Week next week at the Science Mill. Discovery Channel

FRIDAY-SUNDAY

Zilker Botanical Garden opens its Woodland Faerie Trail now through Aug. 10. The trail is full of homes people have created for the fairies. Maybe you’ll see a fairy. Zilker Botanical Garden, 2220 Barton Springs Road. zilkergarden.org

Science Mill. Shark Week. Celebrate all things shark with movies, a fossil dig for teeth and more. Science Mill, 101 S. Lady Bird Lane, Johnson City. sciencemill.org

Zilker Summer Musical “All Shook Up.” Zilker Summer Musical returns with the music of Elvis. 8:15 p.m. Thursday-Sunday. Free, but donations are welcome. Zilker Hillside Theatre, 2206 William Barton Drive. zilker.org

Summer Stock Austin’s “The Music Man.” 2 p.m. Sunday, 7:30 p.m. Sunday, Friday-Saturday. $26-$33-$26. The Long Center, 701 W. Riverside Drive. thelongcenter.org

Summer Stock Austin “Rob1n.” This modern retelling of the Robin Hood tale puts a girl in the starring role in this musical by Allen Robertson and Damon Brown. 11 a.m. Friday-Saturday, 3 p.m. Saturday. $9-$18. thelongcenter.org

“Beauty and the Beast.” The Disney movie comes to the stage. 7:30 p.m. Wednesday-Saturday, 2:30 p.m. Saturday and Sunday. $25-$150. Zach Theatre, 202 S. Lamar Blvd. zachtheatre.org

Alamo Drafthouse Kids Club.  “Sing,” 10:15 a.m. Friday-Saturday, Mueller. 10:15 a.m. Friday-Saturday, Slaughter Lane. $1-$5 donation to benefit local charities. “Teen Titans Go! To the Movies” Family Party. 9:15 a.m. Saturday, Slaughter Lane. Teen Titans Go to the Movies,” Family Party. 9:45 a.m. Sunday, Lakeline. drafthouse.com

Try a dance class at Ballet Austin on National Dance Day. Contributed by Ballet Austin

SATURDAY

National Dance Day. Ballet Austin offers $10 classes all day Saturday, to benefit Ballet Austin’s Pink Pilates program for breast cancer survivors. Classes are available for people ate 10 and up. 9:45 a.m. to 3:30 p.m. 501 W. Third St. Sign up at BalletAustin.org

National Geographic’s “Symphony for Our World.” Hear music by the Austin Symphony Orchestra while watching scenes from nature. 8 p.m. Saturday. $29-$59. The Long Center, 701 W. Riverside Drive. thelongcenter.org

Gustafer Yellowgold. 11 a.m. Saturday. $10-$6. Scottish Rite Theater, 207 W. 18th St. scottishritetheater.org

Bullock Museum. Yippee Yay! The rodeo exhibit comes to life with trick roping. 2 p.m. Saturday. Bullock Museum, 1800 N. Congress Ave. thestoryoftexas.com

Thinkery. Baby Bloomers for children younger than 3. Learn all about Animals. 9 a.m. Saturday. $5.  Thinkery, 1830 Simond Ave. thinkeryaustin.org

Book People events. Samantha M. Clark reads “The Boy, the Boat and the Beasts,” 2 p.m. Saturday. 10:30 a.m. story time Saturday. Spread the Joy, Saturday. BookPeople, 603 N. Lamar Blvd. bookpeople.com

Barnes & Noble events. Kids Book Hangout. Meet other avid young readers. 2 p.m. Saturday, all locations. Story times. Each Saturday all Barnes & Noble locations offer 11 a.m. story times. This week: “Doll-E 1.0.” barnesandnoble.com

Pollyanna Theatre Company’s “If Wishes Were Fishes.” 2 p.m. Saturday, Manchaca Road Branch.

SATURDAY-SUNDAY

Thinkery. Tinkering Take Homes: Scribble Bots, for ages 4 and up. 10 a.m. Saturday-Sunday. $6. Thinkery, 1830 Simond Ave. thinkeryaustin.org

Robin Hood.” The children’s version of the classic story. 10 a.m. Saturday. 2 p.m. Sunday. $10-$8. EmilyAnn Theatre & Gardens, 1101 FM 2325, Wimberley. emilyann.org

Small ensembles from the Austin Symphony Orchestra perform free, casual concerts on the Long Center City Terrace for the Hartman Concerts in the Park series.

SUNDAY

Austin Symphony Hartman Concerts in the Park. 7:30 p.m. Sunday. Free. The Long Center, 701 W. Riverside Drive. thelongcenter.org

BackYard at Waller Creek Sunday Funday. Games, face-painting, bounce house and more. 11 a.m. to 2 p.m. Sunday. Free for kids younger than 12, $5 adults. 701 E. 11th St. backyardbaraustin.com

Paramount Classic Summer Movies. See “Superman.” 1 p.m. Sunday. $6-$12. Paramount Theatre, 713 Congress Ave. austintheatre.org

Could being married save your life? Doctor gives thoughts on new heart study

Last week, we revealed that people who were not married (either never married, widowed or divorce) had a 42 percent increase risk of developing cardiovascular disease and a 16 percent increased risk of coronary heart disease and a 43 percent greater risk of dying from coronary heart disease and a 55 percent great risk of dying form a stroke.

The study, which was published in the journal Heart, looked at the marital status of people enrolled in 34 different studies of 2 million people.

Why would marriage or not being married matter when it comes to being heart healthy?

Dr. Paul Tucker, a cardiologist who practices at St. David’s South Austin Medical Center, says the study made sense to him in what he’s observed in his practice. “I really do think there is truth to the study,” he says.

Melvin and Flora Mae Beck celebrated 60 years of marriage with a party at Sacred Heart Parish Hall on Oct. 7, 2017. Marriage could be a good thing in heart disease prevention. LEA ANN GOERTZ LEE FOR ACN

“When you’re married, you’ve got someone looking out for you,” he says. If your spouse sees that you are looking tired, or not looking well, or short of breath, “you’ve got someone looking out for you, calling you out on it, and saying, ‘Let’s get you to the doctor.'”

It could also be as simple as having someone there to call 9-1-1 if they do have a cardiac event, Tucker says, rather than being alone and not being able to call for help.

What he’s also observed is that patients often come in with their spouses when things aren’t going well. “There’s a lot of denial in men and women,” he says, “especially in men. They don’t want to believe that they (are sick). Typically, the wife spurs the visit.”

At that visit, the spouse will often reveal more information about what is really happening. “They definitely look out for each other and tattle on each other in a loving way,” Tucker says.

People who are married have this built-in support system, but you don’t have to be married to have that, Tucker says. Close friends, some sort of social network where people are looking out for you and expecting you to be there, can make a difference, too.

While we can’t point to specific marriage bio marker or biochemical in the body, we do know that people who are stressed have more cortisol or adrenaline, Tucker says.

Stress, emotional health and well-being, spiritual well-being, they all play a role in heart health, he says.

People who are not married, he says, can be prone to depression, which can create stress, and divorce or the loss of a loved one by death can be very stressful, he says. Marriage also might provide more financial stability and a feeling of more contentment in your life.

“We don’t know everything about heart disease,” Tucker says, but one thing he and other doctors see is something called stress cardiomyopathy. Doctors often refer to it as broken heart syndrome. It’s common in women who have lost a spouse, Tucker says, and it looks like a heart attack in that the heart muscle looks terrible, but there’s no blockage. “It’s been well-described around the world,” Tucker says. “We’ve all seen these cases.”

 

 

St. David’s surgery recovery program reduces opioids, hospital stay

Marty Martinez, 52, loves golf. He plays at least 36 holes a week, usually Saturday and Sunday, sometimes Friday. He calls it “competitive golf,” a group of friends regularly playing for bragging rights.

Yet, when his hip pain got really bad, what he calls a 12 out of 10 on the pain scale, he finally agreed to do something about it and have hip replacement surgery April 12.

“I didn’t realize how bad it was,” he says of the pain. After the surgery, his pain was reduced to no more than a 2 out of 10 during recovery, he says, and people commented about how he looked so pain-free or so happy.

He had the surgery on a Thursday morning, went home the next day and didn’t need any pain medication by that Saturday morning.

Martinez took advantage of the new pain management program at St. David’s Medical Center called the Enhanced Surgical Recovery program. Martinez also works there as the facilities engineering operations manager,

Marty Martinez, the facilities engineering operations manager at St. David’s Medical Center, had a hip replacement this spring using new pain management techniques. St. David’s Health Care

“Our hospital is one of a handful of sites that piloted that program,” says Dr. Erick Allen, an anesthesiologist at St. David’s Medical Center, but it’s based on protocols and techniques that have been used in Europe, Allen says.

Related: Dell Medical School, Seton pilot program to lessen opioids given after childbirth

The program, which began two years ago at St. David’s, has a few different components both before and after surgery. It is being used for gynecologic oncology and colorectal procedures as well as orthopedic operations such as on spines, hips, knees.

First staff works on educating the patient about being a willing partner in their own recovery and care to make sure they have buy-in and that the patient understands the procedure and the post-surgical care.

Then instead of fasting the morning of the surgery, patients are given clear liquids like apple juice, some sports drinks or even black coffee to drink up to two hours before the surgery. This makes sure they are not dehydrated. “It’s been demonstrated with clear liquids that those clear liquids are emptied from stomach within two hours,” Allen says. There isn’t the fear of these liquids getting into the lungs during anesthesia.

Doctors also attach patients to a fluid monitor to make sure they are not operating on a dehydrated or overhydrated patient.

Not fasting and better management of fluids means that patients are starting their recovery with energy reserves and better wound healing capabilities, less anxiety, better insulin management, Allen says.

Doctors also use many different medications for pain control instead of just opioids. Some of those medications are given before the surgery. They are using nonsteroidals like Motrin or Advil, as well as Tylenol and low-dose steroids. They also use gabapentinoids like Lyrica, as well as a ketamine lidocaine infusion. They also decrease the amount of gas anesthesia given and decrease the use of narcotics after the surgery.

They also pay attention to the pain at the incision point by doing using a nerve block or a pain medication pump while in the hospital.

Allen also says there has been an organized effort to reduce the strength of the narcotics used as well as the amount of refills allowed. It has been a challenge getting some patients who have been on narcotics for a long time before surgery comfortable post-surgery, but even those patients can use this protocol, Allen says.

The final key is that patients are up and moving and out of bed much sooner than before to avoid pneumonia, blood clots and other complications.

The feed-back has been “overwhelmingly positive,” Allen says. A big factor is shortening the length of stay. “If you can get people home quicker, in their own bed, it’s a huge satisfier. They can eat what they want on their schedule, with fewer drains and tubes.”

People, he says, are starting to request this technique from their surgeons.

“Five years from now this is going to be the expectations that patients have,” Allen says. “This is truly a better mousetrap. Patients are happier, there are few complications and it’s cheaper.”

The cost savings come in shortening the length of stay in the hospital for patients. Some additional resources, like help with patient education, more infusion pumps, more mixing of medications, and more help getting people out of bed, do happen, but the shorten stay in the hospital offsets those additional expenses.

Great Britain, Allen says, decided to go to this standard of care 10 to 15 years ago. “I do think we’re a little slow to get to this,” he says. “It will be the standard.”

All of the St. David’s HealthCare hospitals are moving to this standard if they haven’t already, Allen says.

“It was really impressive,” Martinez says. Within two weeks, he was putting again, and by three weeks. he was back on the golf course. “You can’t believe it.”

How to explain Santa Fe High School shooting to kids

Another school shooting. How do we explain this to our kids? Sometimes it can feel like: “What can you say that you haven’t said multiple times this school year?”

In October, Jane Ripperger-Suhler, a child psychiatrist at Seton’s Texas Child Study Center, had this advice for parents about how much we should say about a shooting such as the one in Las Vegas that had happened at the time. It’s good advice for what has happened today.

Multiple fatalities have been confirmed at a shooting at Santa Fe High School in Santa Fe, Texas. KTRK-TV ABC13 via AP

We need to be careful about who is watching with TV with us and how we explain it.

“It really depends on the developmental level of the kids,” she says. Consider how you think your child will take what they see on TV, she says. “I wouldn’t watch a lot with preschooler.”

For kids already in school, you can watch some with them, but be prepared to talk about it and answer their questions. You can ask things like: “What do you think about this?” “What questions do you have?” Gage if they want to talk about it, but, she says, “I wouldn’t force them to talk about this.”

Dr. Jane Ripperger-Suhler is a child and adolescent psychiatrist at Texas Child Study Center.

Explain things in the simplest yet factual way you can. You could say “A kid walked into a school and shot students.”

You can focus on how you are feeling, that you’re upset and that you also don’t understand why this happened, but be careful about how you are reacting. “If a parent swoons or becomes frantic, a child is going to do likewise.”

Most importantly, remind kids that they are safe; that you will keep them safe, and when they are at school, their teachers will keep them safe.

If your child seems to be fixated on what happened in these shootings, you could encourage them to draw, build something or act something out, if they don’t want to talk about it.

If they don’t seem to be able to move on after a few days, are afraid to go to school, are too scared to go to bed, are having physical symptoms of stress or behavior problems, get them help sooner rather than later, Ripperger-Suhler says.

Be especially aware if a child has experience a trauma before. Watching this scene on TV will not cause post-traumatic stress disorder, she says, but it can be more traumatic and disturbing to some kids.

Ripperger-Suhler says it’s important to go about normal life. And that normal life means going to school.

If your child expresses some fear about it, reassure them that you will keep them safe.

“Parenting is hard, and it’s really hard when all this stuff is happening,” says Julia Hoke, director of psychological services at Austin Child Guidance Center. “We have to reassure them we are safe. It’s the thing you have to do.”

You also want to be authentic and genuine, she says, but you have to put up a wall and not show them the true depths of our fear and anxiety. “They are going to take the cue from us.”

Hoke has this advice for parents whenever there is an act of violence or terror — such as shootings in public places and schools or the bombings in Austin in March — “it really depends on the age of your kid.” Very young kids might not need you to say much of anything, she says.

For older kids, give them a simplified version of what is happening. Prepare yourself for what you are going to say and check your emotions before you talk to them.

“You’re going to check your own anxiety level,” Hoke says. “Our inhibition isn’t as good when we’re feeling stressed out ourselves.”

Many kids already will know what is happening because schools will be talking about it, their friends will be talking about it, and they have access to social media. They are looking to their parents and teachers to reassure them. “Your goal in talking to your child is making sure they are feeling safe,” she says.

Don’t go into graphic or gory details. “Even with older kids, you don’t want to overshare,” she says.

That also might mean you limit their access to TV news and social media right now. You might not want to have the news running in the background at all times. You’re trying to avoid exposing kids (and really yourself, too) to a secondary trauma.

“Generally when stuff like this happens, it’s important to maintain your normal routine as much as possible,” Hoke says. That doesn’t mean you ignore what’s going on.

Give them updates, but remind them that adults and law enforcement are going to do everything they can to keep them safe, but remind them that if they see something weird with one of their friends or classmates or are concerned about one of their classmates, they should tell an adult immediately.

RELATED: Five years after Sandy Hook, what has changed and what has not

 

Dell Medical School study helping prevent future strokes by combining drugs

Good news out of the University of Texas Dell Medical School:

A new treatment of combining two drugs after having a mini stroke or transient ischemic stroke has been shown to lower the risk of having a major stroke, heart attack or death by 25 percent in the next 90 days. The international study of 4,881 adults in 10 countries was published in The New England Journal of Medicine.  Dr. Clay Johnston, dean and professor of neurology at Dell Medical School was the lead author.

The study combined clopidogrel also known as Plavix and aspirin. The study compared using the combination drug and using just aspirin.

RAPID CT perfusion scan allows doctors to see what area of the brain and how much it is being affected by a stroke.

In a press release Johnson said, “The study gives us solid evidence that we can use this drug combination to prevent strokes in the highest-risk people, but not without some risk of bleeding.”

The study did show that for every 1,000 patients, there were five extra major bleeds but 15 fewer strokes or other “major ischemic events” within that 90 day period. Because the bleeding events are generally reversible, the overall benefit outweighs the risk for most patients, Johnston said in that press release. More than half of the 33 major hemorrhages that occurred were in the gastrointestinal track. No one died because of the bleeding, and the bleeds were thought to be preventable and treatable, and worth the risk.

Having a minor stroke or a TIA means that a person has a 3 percent to 15 percent chance of having a more severe stroke in the next three months, typically. The American Stroke Association estimates that more than a third of U.S. adults have had TIA symptoms.

“It’s likely we will see more patients who have had a TIA or a minor stroke receiving the combination of clopidogrel and aspirin in the future,” Johnston said in a press release. “If you’ve suffered from a minor stroke or TIA, it’s important to see a physician immediately, even in the emergency room, to ensure you’re taking steps to avoid a potentially debilitating stroke later on,” he said. “There are several tests that need to be done right away to determine the cause of the event and to make sure the best treatments are started as soon as possible.”

RELATED: Technology allows doctors to treat, reverse stroke damage within six hours

RELATED: Austin Speech Labs helping stroke patients speak again

University of Texas School of Nursing looking for participants in two studies on sleep and Alzheimer’s disease

University of Texas School of Nursing is enrolling patients in two different studies that look at Alzheimer’s disease and sleep.

Kathy Richards, research professor and senior research scientist, has been interested in the possible connection between the two for decades. She’s heading both studies at UT.

University of Texas School of Nursing research professor and senior research scientist Kathy Richards has been studying sleep apnea and Alzheimer’s disease and restless leg syndrome and nighttime agitation in people with Alzheimer’s. University of Texas

One of the things that often happens with Alzheimer’s disease is something called “sundowning.” The person with Alzheimer’s disease becomes agitated or restless at night. Often, it’s like they have their days and nights reversed.

“It’s the most common reason for admission to the nursing home,” Richards says. It becomes hard to care for them in their home, she says, because they are up at night, when their loved ones need to be sleeping, and they try to leave home.

She knows the affect sundowning can have on a family. Richards’ aunt, who had Alzheimer’s disease, escaped from the home she shared with her husband one night. She went out to the lake, started the boat and drown, Richards says.

“That’s not as uncommon as you think,” she says.

Traditionally, sundowning was either treated by trying to improve the patient’s sleep hygiene through reducing napping and increasing exercise, she says. Sometimes patients also would be given anti-psychotics or hypnotic medications to control the behaviors, but those can lead to injuries from falls or strokes or death.

One of Richards’ studies is looking at restless leg syndrome and Alzheimer’s. Could the medication used for restless leg syndrome be beneficial to someone who has sundowning? Restless leg syndrome is a painful or uncomfortable sensation in the legs that only happens in the evening and night or gets worse at those times. It makes people feel like they have to move their legs or get up and walk around.

Restless leg syndrome is worse with people who have iron deficiencies, which tend to happen as you get older. Some antidepressants make Restless leg syndrome worsens with some antidepressants, which people with Alzheimer’s are often given to control the agitation.

Richards has been wanting to study this for 20 years, but first, she had to figure out how to diagnose restless leg syndrome without a patient being able to tell her what they were feeling. The technique she developed, first on people without Alzheimer’s, and then carried through to people with Alzheimer’s, is to have a patient sit in a chair for 20 minutes and have a nurse record the number of times their legs move. What she found was that about 75 percent of people with Alzheimer’s also had restless leg syndrome.

Now the new study, called Nighttime Agitation and Restless Leg Syndrome in People with Alzheimer’s disease is studying people with Alzheimer’s who have nighttime agitation and are in nursing homes. Some get gabapentin enacarbil, a medication approved for restless leg syndrome. The others get a placebo pill.

The hope is that if that medication works on people with Alzheimer’s disease who have nighttime agitation fewer of them will need to be in a nursing home or can stay in their own home longer. To register someone for that study, email narls@utexas.edu or call 512-475-7505.

The other project is the second part of a study that looks at people with mild cognitive impairment to see if they have sleep apnea and if using a CPAP (continuous positive airway pressure) machine would help improve their memory. An earlier study on people in nursing homes with Alzheimer’s disease found that 65 percent of them had obstructive sleep apnea. “We were very surprised by that,” she says.

The hope is that this second phase of the Memories study will study about 450 people with mild cognitive impairment. They will be tested for sleep apnea. If they already have a sleep apnea diagnosis, they can be part of the study if they were given a CPAP years ago but don’t use it. In the study, four groups of people will be looked at: People with sleep apnea who use the CPAP at least four hours a night; people with sleep apnea who use the CPAP less than four hours a night; people with sleep apnea who don’t use the CPAP; and people with mild cognitive impairment who don’t have sleep apnea.

Participants will be studied for a year. To register for that study, email mmackenzie@utexas.edu or call 512-471-9462.

Comfort care, palliative care, hospice care explained after Barbara Bush’s death

On Monday, when it was announced that first lady Barbara Bush was choosing “comfort care,” many people wondered what that meant. What’s the difference between “comfort care” and palliative care, and what about hospice care?

Bush, who died Tuesday and whose funeral will be Saturday in Houston, caused people to talk about end-of-life care and the decisions they might make for themselves.

Choosing comfort care means that you are choosing treatment for comfort instead of a cure. If you had a disease like cancer, you would be deciding that you are no longer going to pursue chemotherapy or radiation treatments. Instead, you would pick quality-of-life treatments such as pain relief. “Comfort care is not a withdrawal of medical care,” says Dr. Elizabeth Kvale, associate professor and head of palliative care at Dell Medical School at the University of Texas at Austin. “It’s a refocusing.”

In a March 2005 file image, former first lady Barbara Bush listens to her son, President George W. Bush, speak during a stop at the Lake Nona YMCA Family Center in Orlando, Fla. Joe Burbank/Orlando Sentinel

Instead of curative treatments, doctors focus on treatments to provide a good quality of life. “You’re forgoing life-extending treatments,” she says.

People often confuse comfort care with hospice care or palliative care.

Palliative care provides a team approach to a person with a life-limiting illness. It’s not for people who have a chronic illness, and it’s more than just pain management. People on palliative care don’t have to have an estimated time in which their disease will lead to death, which is true in hospice care.

At the center of palliative care is the patient and the family. Supporting them is a team of physicians, nurses, nurse practitioners, a social worker and a chaplain.

Someone who is receiving palliative care can continue to receive curative treatments as well, says Dr. Bob Friedman, who is the chief medical officer at Hospice Austin and President of Austin Palliative Care. “We collaborate with providers on continuity of care,” he says, as well as consider more than pain management or treatment management. “Often the medication management is the easiest part,” Friedman says. “It’s dealing with the emotional, spiritual issues and social perspective of what’s going on in the home. It’s as important, if not more important, than medication management. It takes more time and patience.”

Kvale thinks of palliative care as an additional layer of support for patients that are getting treatment for a life-threatening illness.

During the time a patient falls under palliative care, the team will talk to the patient about advance care planning and their end-of-life wishes, even though the end of life is not imminent.

There might come a point during palliative care, where it might be in the patient’s best interest to stop curative treatment. Then, if they have been given a medical prognosis of having six months or less to live with their illness, they can choose hospice treatment.

With hospice treatment, they also get a team approach and it’s patient-centered as well. The team focuses on the quality of life remaining, and the patient’s physical, social, emotional and spiritual needs. If they don’t have advance care directives, this would be the time to make their wishes known in writing.

Often with hospice and sometimes with palliative care if that’s the patient’s choice, the team works on helping the families and the patient change the expectations and the definition of hope. We have the “fight the good fight” mentality, Friedman says, and sometimes the role of the palliative care team can be about helping the patient and family accept what’s to come and prioritize enjoying the rest of their life. “We don’t tell people what to do, we educate,” Friedman says. The team will explain the risks and benefits of continuing with curative care, but it’s the patient’s choice whether to continue with it, he says.

Another difference between hospice care and palliative care might be the kinds of pain medication prescribed, Friedman says, based on the patient’s wishes. With palliative care, the patient might want to be fully aware and engaged, which means that the amount of pain medication given will be less. With hospice patients, comfort might be the ultimate goal, which might mean a higher dose of medication or a different kind of medication. Also some medications, which limit some of the side effects a patient might be experiencing, wouldn’t be appropriate for someone who is expected to live a long time because of additional side effects.

It’s important that families talk about their wishes before a life-limiting illness. Hospice Austin is now offering The GIFT Project — Giving Instructions for Tomorrow — that can help families talk about their end-of-life wishes, as well as do advanced care planning and fill out advance directives. Hospice Austin hosts a workshop the third Thursday of the month from noon to 1 p.m. at its offices, 4107 Spicewood Springs Road. hospiceaustin.org/advancedirectives Hospice Austin also can bring the program to community groups as well as to medical offices.

RELATED: How to make end-of-life plans now

Who cannot receive palliative or hospice care?

Someone with a chronic illness or an illness that is not impacting their quality of life.

Who can receive palliative care?

Someone with a life-limiting illness, who wants help managing symptoms and well-being.

Who can receive hospice care?

Someone with a life-threatening illness that a physician can attest will cause them to die within six months if nothing else is done.

Austin Regional Clinic studying anti-flu drug in high-risk patients

Austin Regional Clinic has been studying a new drug to fight the flu.

The drug from Japanese company Shionogi Inc. is known as S-033188 to the Food and Drug Administration or baloxavir marboxil outside of the study. It would be an alternative to Tamiflu.

Baloxavir marboxil already has been studied in otherwise healthy people with the flu, and showed promise for its rapid reduction of symptoms. This new phase is testing the anti-viral medication in people who are considered high risk.

This 2011 Centers for Disease Control and Prevention shows the H3N2 strain of the flu, which has only been 10 percent to 15 percent responsive to the flu vaccine. Centers for Disease Control and Prevention

This flu season has been the worst since the swine flu outbreak of 2009. Already 37 people have died from the flu in Travis County. In the U.S. 63 children have died from the flu, though none in Central Texas.

ARC was added as a site for the study after researchers were having trouble getting enough people who qualified,says Dr. Anurekha Chadha, a rheumatologist at ARC.

To qualify, you have to have flu symptoms less than 48 hours. You also have to have asthma or another chronic lung disease; an endocrine disorder such as diabetes; a compromised immune system; HIV; neurological or neurodevelopmental disorders such as epilepsy, stroke or cerebral palsy; heart disease beyond high blood pressure; blood disorders such as sickle cell anemia; a metabolic disorder; have a body mass index greater than 40; or are American Indian or Alaskan Native; older than 65 years old; live in a long-term care facility or are within two weeks postpartum and not nursing.

The drug is a small molecule inhibitor and works slightly differently than Tamiflu, Chadha says. The hope is that this drug will provide a choice for viruses that don’t respond to Tamiflu, which came out in 1999. Not all patients respond to Tamiflu, she says, and Tamiflu also been known to cause gastrointestinal problems. With only one choice, doctors worry that it will stop responding to the flu or that the virus will mutate, Chadha says.

Dr. Anurekha Chadha is a rheumatologist with Austin Regional Clinic.

“When I saw this protocol, it was like, ‘Wow, finally another choice,’” she says. “You want to have an entire bag of choices to apply to patients.”

This study is important, she says, because patients who are at high risk tend to get sicker.

To enroll in the study, patients also have to be willing to be seen at ARC’s Wilson Park location and meet the qualifications. “What’s challenging is finding the right patient to enroll,” she says. So far ARC has been able to enroll at least one patient, she says.

Patients who enroll are given either the new drug or Tamiflu. There is a potential with this study for getting a placebo. Participants take this drug for five days once a day, instead of twice a day. Then they are studied from Day 6 through Day 22 with examinations, ECGs of the heart, blood tests, nasal swabs, throat swabs and filling out questionnaires. “It is allowing them access to care above the standard of care in treating their flu,” she says.

More flu-fighting medications, including biologics, are in early stages of study, Chadha says.

Find out more about the flu study

austinregionalclinic.com/services/clinical-research/flu-study

clinicaltrials.gov