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3 hours ago · Defeating Foot Pain With Neurostimulation

Unrelenting foot pain dictated Valerie Nicolaison's life for years. It eventually took away her ability to drive, cook, walk and stand. In 2018, however, Valerie's pain met its match when she received a device that stops pain signals in their tracks.

Unrelenting foot pain dictated Valerie Nicolaison’s life for years. It eventually took away her ability to drive, cook, walk and stand. In 2018, however, Valerie’s pain met its match when she received a device that stops pain signals in their tracks.  




There
was a time in her life that Valerie Nicolaison didn’t think she would ever be
able to take her Chihuahua, Colt, for a walk. Day in and day out for more than
seven years, Valerie lived with foot pain so intense that it hobbled her. She
couldn’t wear shoes. Socks were problematic. Even soft sensations, like a sheet
on her feet in bed, shot jolts of electric pain up her legs and through her
body.

In fall 2018, however, Valerie’s life underwent a dramatic transformation when she was implanted with a dorsal root ganglion stimulator at Mayo Clinic. The device blocks the pain signals moving from Valerie’s feet to her brain, and it has opened up her life to a world of shoes, outings and new possibilities.

“I
can take Colt on short walks now, which feels pretty amazing,” Valerie
says. “It’s definitely still a work in progress, but I am able to do so
many things now that I wasn’t sure I would do again. And I know it’s only going
to get better.”

Although spinal cord stimulators have been available for about 30 years for chronic back and leg pain, the devices have been much less effective for foot pain. Mayo Clinic was one of the first medical centers in the U.S. to offer patients dorsal root ganglion, or DRG, stimulation, says Valerie’s physician Tim Lamer, M.D., in Pain Medicine.

“The
problem with the traditional spinal cord stimulator is while they do a good job
of covering pain in the legs and lower back, they don’t do as good a job of
covering pain in the feet,” Dr. Lamer says. “DRG is a honed
electrical signal to a specific area.”

An arduous journey

Valerie’s struggle with foot pain began in 1999 when she was 24. The pain set in gradually. Eventually, it became so severe that it prevented her from walking or driving. Valerie, who at the time lived in Staples, Minnesota, was diagnosed with Morton’s neuroma — a thickening of the tissue around the nerves leading to the toes. In 2001, the abnormal tissues were surgically removed. After that, her pain subsided.

But
one morning in November 2011, Valerie woke up, and the pain was back. “It
was overnight. I was not able to walk,” Valerie says. “My feet just
constantly wanted to cramp. All the way through my toes and arches, just all at
once. It was pressure that just did not let up.”

Valerie’s
surgeon determined the Morton’s neuroma had caused additional growths to
develop.

“Seven
more tumors were removed from both feet, which gave me a little bit of relief,”
Valerie says. “But the pain still always came back.”

“I could not sit with my feet down on the floor like a normal person. I’d have to have them propped up on something.”

Valerie Nicolaison

Valerie
was referred to a larger medical center in the Twin Cities for testing. “Everything
on the planet was ruled out,” she says, explaining that she was examined
by neurologists, oncologists, rheumatologists, vascular surgeons and other specialists.

Valerie,
an accountant, tried to work around her painful symptoms, but eventually was
forced to go on unpaid medical leave. “I could not sit with my feet down
on the floor like a normal person. I’d have to have them propped up on
something,” she says. “At work in meetings, I would have to find
another chair to bring over.”

Temperature
also affected Valerie’s pain. When her feet got cold, as they often did in
Minnesota, the pain got worse. The impact of the cold temperatures on her
painful condition prompted her and her husband, Chad, to recently move to
Arizona.

Through
the years, Valerie tried a number of pain management strategies, including
injections, acupuncture, mirror therapy, physical therapy, transcutaneous
electrical stimulation and biofeedback. None of them worked.

In 2018, Valerie started working with a pain management specialist in Duluth, Minnesota, who diagnosed her with complex regional pain syndrome, or CRPS. In addition to a new diagnosis, the pain specialist provided Valerie with a referral to Dr. Lamer.

An alternate treatment
route

During her first appointment at Mayo Clinic’s Rochester campus, Valerie detailed her history and symptoms to Dr. Lamer. “Dr. Lamer looked at my feet and really listened to my story,” Valerie says. “That was one thing that impressed me. I felt like he was there to listen to everything I had to say and get all of the information that he needed to help me.”

While
complex regional pain syndrome is not a common condition, it can be
debilitating to those it affects, Dr. Lamer says. “The word ‘complex’ is
there for a reason. It’s a chronic pain condition almost always affecting an
arm or leg or foot or hand, and it almost always occurs after trauma.”  

The
trauma could be as slight as an ankle sprain or intense as a surgical
procedure, Dr. Lamer explains. “And what happens is instead of the nerves
in the affected limb healing normally, they never really get back to normal and
remain in a constant state of overdrive.”

In
extreme cases, nearly everything the limb is exposed to causes pain. For
Valerie, even the slightest touch was unbearable. “Valerie came into my
office in the middle of winter with sandals on,” Dr. Lamer says. “If
her dog steps on her foot, it sends her through the roof. It was literally
debilitating her. She was basically housebound.”

For
patients like Valerie, whose pain is unresponsive to other treatment, dorsal
root ganglion stimulation, can be life-changing. The device consists of electrical
leads that run from a battery and are surgically placed directly next to the
dorsal root ganglion — one of the control centers for nerves coming into the spinal
cord. When the device is activated, an electrical current is generated and sent
to the dorsal root ganglion, where it intercepts the pain signals coming from
the affected limb.

A huge step forward

For
all the relief the device could possibly give her, Valerie says she was petrified
of the surgery. “There weren’t many stops after this if it didn’t work,”
Valerie says. “Dr. Lamer knew that, and he was very calming and
reassuring.”

During
the outpatient operation in October 2018, the leads and battery pack were
implanted into Valerie’s lower back. When she woke up, a staff member with
expertise in device programming was present, ready to turn on and fine-tune the
device.

“The
relief wasn’t immediate, but it was pretty quick,” Valerie says. A few
hours after the device was activated, Valerie was discharged from the hospital.

“This is like night and day for me. I really feel like I’ve been given my life back.”

Valerie Nicolaison

The
current from the device is sent continuously, but should Valerie want to stop
the electrical signals, she can control the device from an iPod. She will
return to Mayo Clinic every few years to have the device’s battery pack
replaced. Barring unexpected issues, Valerie’s foot pain should continue to
improve, Dr. Lamer says.

“I
got so used to the 24/7 pain that it just became my new normal,” Valerie
says. “Before, if I wanted to do anything, it had to be right away in the
morning. And now, I can actually go play pool in the evenings. I never thought
I’d be able to go do something in the evening ever again. This is like night
and day for me. I really feel like I’ve been given my life back.”


HELPFUL LINKS

1 day ago · Genetic Testing Reveals Answers During Long Medical Odyssey

After searching nearly three decades for an explanation to his challenging medical problems, whole-exome sequencing at Mayo Clinic finally provided the information Kyle Christy needed to better understand his condition and chart a way forward.
Debra, Kyle and Todd Christy

After searching nearly three decades for an explanation to his challenging medical problems, whole-exome sequencing at Mayo Clinic finally provided the information Kyle Christy needed to better understand his condition and chart a way forward.




At
age 27, Kyle Christy has defied the odds. He was born with seemingly
insurmountable medical challenges that caused his parents, Debra and Todd, to
fear what their firstborn son’s life would be like. When their second child was
born 19 months after Kyle, the couple immediately noticed the differences
between a healthy baby and Kyle, who failed to thrive.

“We just kept going from doctor to doctor,” says Debra, as she describes the litany of medical problems that Kyle has endured: low muscle tone, allergies, motor issues, osteoporosis, a spinal condition called kyphosis, severe swallowing issues and gastrointestinal problems. Kyle also had a difficult time socializing and interacting with others.

“I
won’t deny that it’s been tough,” Kyle says. “Many told me that I
wouldn’t make it through high school, let alone college. But I’ve always been
determined.”

Relentless search

Debra and Todd could only guess at what brought on Kyle’s perplexing symptoms. They didn’t rule out autism. Given Kyle’s tall, thin body type, they thought Marfan syndrome might be a possibility, too. They kept searching. After a while, Kyle grew weary of the endless doctors’ appointments and tests. “We’ve done pretty much every type of testing you can think of,” he says. “But it was always one dead end after another.”

The long search finally came to an end in 2018 when Kyle and his family discovered the Diagnostic Odyssey Clinic led by Radhika Dhamija, M.B.B.S., in the Department of Clinical Genomics at Mayo Clinic’s Arizona campus. Kyle and his family underwent whole-exome sequencing, a test that can essentially read a person’s genetic code. The results can reveal the way the human body grows and develops.

“We know moving forward that Kyle was made that way on day one. We don’t have to keep searching and having him tested. That’s huge.”

Debra Christy

The results of Kyle’s test were thoroughly
reviewed by the Mayo Clinic Diagnostic Odyssey Board, which includes
representatives from the Department of Clinical Genomics and the Center
for Individualized Medicine
. Specialists from numerous disciplines,
including clinicians, laboratory physicians, genetic counselors and postdoctoral
fellows discuss potential next steps for patients.

The test results uncovered the cause of
Kyle’s medical issues: a gene mutation. Although there is no cure or treatment
at this point, Kyle accepts that. “It’s genetic, and it’s part of who I
am,” he says.

His mother says having the information in
hand now, even though no treatment is available, is a significant step. “We
know moving forward that Kyle was made that way on day one,” Debra says.
“We don’t have to keep searching and having him tested. That’s huge.”

Unflappable resolve

As
they worked with him, Dr. Dhamija and the rest of Kyle’s team at Mayo Clinic
learned much about the medical problems that have troubled him since childhood,
and they were impressed with his tenacity.

“Kyle
has been one of the most involved patients I’ve had,” Dr. Dhamija says. “He
asked very intelligent questions, and said that if this was going to be for research
or to help patients in the future, he wanted to be part of it.”

Mary
Weise, a nurse coordinator who supports the program, said that after all the
years of uncertainly, the care team was gratified to be able to give Kyle and
his family the information they needed. “It provided them that peace of
mind they were seeking,” she says.

Although
knowing the root cause of Kyle’s medical concerns will be useful going forward,
his parents are confident that the unstoppable resiliency Kyle relied on during
years of uncertainty also will continue to serve him well. “I always say
he is totally Kyle,” Todd says. “Kyle does not fit any mold,” Debra
adds.

“When people tell me I can’t do something, I’m eager to prove them wrong.”

Kyle Christy

Todd
marvels at Kyle’s ability to see the good in life, despite all he has been
through. “He has such a great attitude,” Todd says. “He’s just
so unique.”

“He
has always been a light in our family,” Debra says. “He could be
having the worst day, and he will just say: ‘Look at the sky. Isn’t it
beautiful?'”

His
attitude isn’t the only area where Kyle’s positive approach to life shines through.
He has always been confident in his ability to tackle daunting challenges. Despite
his medical concerns, Kyle’s language skills are highly evolved, and he has a
passion for writing. He insisted on going to public high school with his
siblings.

After
he graduated, Kyle posed the idea of Mesa Community College. “We said, ‘Go
for it.'” Debra says. After receiving his associate’s degree, the prospect
of pursuing a bachelor’s degree came next. Kyle didn’t hesitate to suggest
Arizona State University, close to their home in Tempe, Arizona. Both Debra and
Todd were on board with Kyle’s decision. He earned a degree in English literature.

“When
people tell me I can’t do something, I’m eager to prove them wrong,” Kyle
says.

Welcome relief

Although
he took pride in all he accomplished, it was still important to Kyle to better
understand the cause of his medical problems. “I just wanted to find out
what has held me back all these years,” he says.

While
Todd and Debra also celebrate Kyle’s achievements, for 27 years the couple was
undeterred in pursuing their mission to help Kyle learn more about his
condition. But it wasn’t easy. At times, Debra questioned herself, wondering if
“another mom would have figured this out sooner.”

When the Christy family finally found out
about Kyle’s gene mutation, it was a relief for everyone involved. “When
Dr. Dhamija came into the room, for the first time out of all the doctor visits
we had gone through, she told us ‘We have an answer,'” Debra says. “It
was just so overwhelming to finally hear that.”

With his search for an explanation at an end,
Kyle now is focusing on his aspirations. “I want to just live my life, get
a job and maybe have a family someday — just go where life takes me.”

Words of encouragement from Kyle Christy …

From the very moment I left the womb, people could tell there was something different about me. As a baby, my development was slower than most, and it was believed I was suffering from a connective tissue disorder that was impeding my ability to develop on the same level as my peers.
 
Because of this, some of my instructors vocalized that I would not be able to make it through high school, let alone college. However, I have never let my limitations define my life, and I made it my mission to prove everyone wrong who doubted me! I graduated from one of the most prestigious universities in the country with a bachelor’s degree in English literature.
 
It was only recently that I learned the true cause of all this, thanks to the amazing doctors at the Mayo Clinic in Phoenix, Arizona. Thanks to the latest developments in genetic research, they were able to determine that all the issues I had dealt with all of my life were caused by a genetic mutation that had developed in my body before I was even born.
 
Never believe you don’t have a choice, because your life is just that — your own — and you always have the power to shape it any way you want to. As long as you believe in yourself and have the right amount of support, a life of success and happiness is right outside your door.

Learn
more about Kyle’s story in this video:


HELPFUL LINKS

5 days ago · Tackling Two Liver Diseases With One Transplant

Collaboration among a multidisciplinary care team at Mayo Clinic helped Julianne Vasichek successfully navigate not one, but two, rare liver diseases.
John Poterucha, M.D. and Julianne Vasicheck

Collaboration among a multidisciplinary care team at Mayo Clinic helped Julianne Vasichek successfully navigate not one, but two, rare liver diseases.




After
graduating from high school, Julianne Vasichek was eager to take her athletic talents
to the women’s hockey team at the University of Minnesota Duluth (UMD).
Julianne’s college career got off to a rocky start, however, due to a sudden
change in her health. “I was symptomatic my entire freshman year of
college while doctors tried to figure out what was going on,” she says. “But
I played through it.”

Diagnosed with ulcerative colitis, Julianne had a colonoscopy done a week before the Bulldogs’ 2001–02 NCAA Division 1 championship game. “That colonoscopy really helped spur me on during that game,” Julianne says. “We did win, but I was pretty worn down by the end of the year from playing through my symptoms.”

Doctors
in Duluth, Minnesota, put Julianne on medication that kept her symptoms at bay
long enough for her to finish her playing career at UMD. That career included
another national title and tryouts for a spot on Team USA’s women’s ice hockey
team. “I tried out for the 2006 Olympic team but didn’t make the final
cut,” Julianne says. 

After
that, Julianne moved east to take an assistant women’s hockey coaching job with Bowdoin College in
Maine. “I was thinking about still trying to play hockey
myself, but I started noticing throughout that year that I was just getting
more and more tired,” she says.

Initially
chalking it up to being “tired from life in general,” Julianne put
her increased fatigue out of her mind. “I just shrugged it off,” she
says. Then at the start of 2008, her skin began to feel itchy. “I was in
my early 20s and otherwise healthy, so again, I shrugged it off,” she
says.

When
Julianne returned to Duluth a few weeks later to watch UMD host that year’s
national championship game, however, she couldn’t ignore her symptoms any
longer. “By that time, I was itching so badly I was cutting the skin around my ankles
and feet,”
she says. “It was at that point that I said, ‘Maybe I do need to get this
checked out.'”

Facing a scary diagnosis

When Julianne got back to Maine, blood tests revealed a surprising cause for the itching. “I was diagnosed with primary sclerosing cholangitis,” she says. “It’s an inflammatory disease that causes scarring within my bile ducts that, in turn, makes the ducts hard and narrow. Over time, it causes serious liver damage.”

Julianne was told the damage eventually would require a liver transplant. “That was a scary thing to hear,” she says. “But my gastroenterology doctor in Maine said the disease usually progresses slowly, and that it could be several years before I’d need to start thinking about a transplant.”

“I knew people who had gone to Mayo Clinic, and I knew that’s where I wanted to go, too.”

Julianne Vasichek

At that point, Julianne decided she no longer could stay in Maine. “I didn’t feel like I knew where to go to get the care and treatment I’d ultimately need,” she says. “I knew people who had gone to Mayo Clinic, and I knew that’s where I wanted to go, too.”

Julianne
put that plan into motion by calling her former coach at UMD. “I told her
about everything that was going on and that I’d like to come back and work for
UMD,” she says. “I thought that would be an ideal situation because
it would allow me to be closer to Mayo Clinic. Thankfully, it worked out.”

With her return to Minnesota set, Julianne’s next call was to Mayo Clinic to schedule an appointment. At Mayo Clinic’s Rochester campus, Julianne was placed in the care of John Poterucha, M.D., in the Department of Gastroenterology and Hepatology.

“I’d
had some lab tests done before coming to Mayo. After looking at those, Dr.
Poterucha said things were looking good. He wanted me to come back in six
months for another checkup. But I asked if we could shorten that to three
months because I was still symptomatic and wanted to stay on top of things as
best I could, and he agreed.”

Getting to know her foe

After
meeting with Dr. Poterucha, Julianne returned to Duluth and immersed herself in
learning as much as she could about primary sclerosing cholangitis, or PSC. “I
also became active in trying to meet other PSC patients,” she says. “That
was huge for me because it helped me see I wasn’t the only one in the world
living with this disease.”

Julianne
organized a benefit hockey game at UMD to create more awareness of primary
sclerosing cholangitis and raise funds for research. It was at this time,
however, that Julianne’s health really began to decline.

“I’d
had some hospitalizations for infections between my initial consultation with
Dr. Poterucha and then,” Julianne says. “But we still weren’t talking
about a transplant because, even though the disease was progressing, the
therapies and treatments I was receiving were keeping things at bay.”

Shortly
before the fundraiser, that changed. “I was sick that whole week,”
Julianne says. “But there was no way I was going to miss that game, so I
ended up making it through the weekend. But by Sunday night, I was feeling
pretty bad. “

Julianne
went to the hospital. “They did scans, but they couldn’t find anything
abnormal,” Julianne says. “I had a lot of pain in my lower abdomen,
but they weren’t sure what was causing it.”

“In addition to everything else, I’d gained 30 pounds of fluid and had developed swelling around my brain. Everything was going south.”

Julianne Vasichek

Fluids
and nausea medication helped her to feel a bit better, and then she was sent
home. Her care team at the hospital told Julianne to follow up with her
gastroenterologist as soon as possible. By the next morning, though, she was back
where she’d begun. “I was throwing up again, so I went right back to the
hospital.”

As
she was going through all of this, Julianne’s doctors in Duluth were keeping in
close contact with Dr. Poterucha and the rest of her care team at Mayo Clinic. That
contact intensified as Julianne’s health worsened.

“It
had become apparent by Wednesday morning that I needed to be transferred to
Mayo,” Julianne says. “In addition to everything else, I’d gained 30
pounds of fluid and had developed swelling around my brain. Everything was going
south.”

Julianne
was transported by air ambulance to Mayo Clinic. “I was assessed for
transplant immediately after we landed because, by that point, they knew my
liver was beyond repair,” she says.

Battling for hard-earned
relief

While
Julianne and her care team were aware of the complications primary sclerosing
cholangitis were causing for her liver, an ultrasound revealed that another
problem was lurking in the background.

“A couple of my major veins were dark and not visible on the ultrasound, so my care team knew they were blocked,” Julianne says. “After more testing, they learned I’d also been living with a second rare liver disease called Budd-Chiari syndrome.”

Julianne
and her team were stunned. “Having these two rare conditions together is
kind of ridiculous,” Julianne says. “The odds are more than 1 in a
million. Nevertheless, the disease had clotted several veins in my liver and
made my need for a transplant imminent, as my liver function was down to 20% by
that point.”

Thankfully
for Julianne, her wait for a transplant would not be long. “All of this
happened on a Thursday, and the next day, my care team told me they’d found a
new liver for me,” Julianne says. “My transplant was then scheduled
for the next day, Saturday, Feb. 28, 2015, which happens to be Rare Disease Day
every year. I found that fitting.”

“After I woke up, Dr. Nyberg told me the new liver fit perfectly. I remember giving him and a whole room of other doctors high-fives after hearing that.”

Julianne Vasichek

But
in the course of the surgery, Julianne’s transplant surgeon, Scott
Nyberg, M.D., Ph.D.
, discovered another obstacle. “During
the transplant, Dr. Nyberg and the rest of the team saw that part of my colon
was dead, so they had to call in a colorectal surgeon to deal with that,”
Julianne says.

The
surgeon, David
W. Larson, M.D.
, had to remove 40% of Julianne’s colon
to allow Dr. Nyberg and his team to continue with the transplant. Fortunately,
the rest of the procedure went off without another hitch. “After I woke
up, Dr. Nyberg told me the new liver fit perfectly,” Julianne says. “I
remember giving him and a whole room of other doctors high-fives after hearing
that.”

With her new liver in place, Julianne and her care team spent the next few days waiting to see how her body would respond. “They were watching to see what the brain swelling was going to do,” Julianne says. “I’d also been on dialysis since arriving at Mayo, so we were all waiting for things to hopefully correct themselves with the new liver. It was, honestly, still pretty touch-and-go at that point. My care team still wasn’t sure if I was going to survive.”

But
thanks to the collaborative efforts of everyone involved in her care, Julianne
did survive.

“Mayo’s
overarching team approach to patient care really shone through in everything surrounding
my care. I have no doubt that’s why I’m still alive today. That and, of course,
because of my donor,” Julianne says. “I’m just really thankful I live
close to Mayo Clinic now and have access to their care because it’s been lifesaving
for me.”

Learn
more about Julianne’s liver transplant at Mayo Clinic in this video:


HELPFUL LINKS

Wed, May 15 5:00am · Thankful for the Gift of Motherhood After a Long and Trying Journey

At times, Jess Pederson thought she might never become a mother. She struggled through infertility treatments and faced the risk of preterm labor. But now, as Jess watches her healthy baby boy thrive, she's grateful for the compassionate care she received along the way.
Jess, Chet and Alex Pederson

At times, Jess Pederson thought she might never become a mother. She struggled through infertility treatments and faced the risk of preterm labor. But now, as Jess watches her healthy baby boy thrive, she’s grateful for the compassionate care she received along the way.




“I didn’t think I would ever be able to
have a baby,” says Jess Pederson of Eau Claire, Wisconsin. “There was
a point when it just seemed like this wasn’t going to happen.”

Jess looks back thankfully now that her baby
boy, Chet, is home, eating well and filling out with the chubby cheeks of
babyhood. But her journey to motherhood was a long one, marked with struggle
and heartache along the way.

Navigating
a rocky road

Jess and her husband, Alex, started trying to
have a baby in 2013. After two miscarriages, doctors found precancerous cells
on Jess’ cervix, which required surgery. This further delayed the couple’s
family plans. Then Jess had difficulty getting pregnant again.

“After a year and a half, I decided it
was time to get help,” says Jess, who works as a registered nurse at Mayo Clinic Health System. She underwent intrauterine insemination and
then in vitro fertilization. In
February 2017, she learned she was pregnant. But the challenges didn’t end
there. Jess experienced complications throughout her pregnancy.

“The whole pregnancy, I just felt like a
ticking time bomb,” Jess says. “The baby could come at any time.”
At 17 weeks, an ultrasound showed Jess’ cervix was shorter than it should have
been. She was having pain, and her cervix continued to shorten. The signs were
pointing toward early labor.

“The staff was very helpful and understanding of the difficulty of the situation.”

Jess Pederson

“My goal initially was to make it to 28
weeks,” Jess says. “Every week after that, we were happy just to keep
him in as long as possible.”

At 33 weeks, Jess was admitted to Mayo Clinic Health System in Eau
Claire
 for
possible preterm labor. Jess’ obstetrician, Suzette Peltier, M.D., administered
steroids to help the baby’s lungs develop. Jess’ contractions stopped, and she
went home for another week and a half. Baby Chet was born at 34 weeks and five
days, weighing 5 pounds, 14 ounces, and measuring 18.5 inches.

“It was a relief when he was born and
was able to breathe on his own,” Jess says. After years of imaging it, she
was finally able to hold her precious baby to her chest.

Thriving
with careful care

After he was born, Chet remained in the
Special Care Nursery at Mayo Clinic Health System in Eau Claire for two weeks,
where he received the level of care he needed to thrive. His heart and blood
oxygen saturation were monitored around the clock. He also was on a feeding
tube for the first week and a half to help him gain weight. Jess says the
nurses helped the family through this anxious time.

“The staff was very helpful and
understanding of the difficulty of the situation,” she says. “I’m
very thankful for the wonderful care he received.”

“All the injections, tears and heartache were worth it to be holding this tiny human being and to be able to call him my son.”

Jess Pederson

In addition to keeping careful watch over Chet,
the nurses assisted with bathing and diaper changes, and they let Jess know
when Chet was ready to be fed. Jess and Alex were able to stay in a room at the
hospital throughout Chet’s stay, which allowed Jess to be available for night
feedings and provide skin-to-skin contact to help Chet adapt to life outside
the womb.

“We were able to see him as much as we
wanted,” she says. “But we didn’t disturb him when he was sleeping,
so he could get the rest he needed.”

Now at home, Jess says Chet is doing well,
and she does not take that gift for granted. “All the injections, tears
and heartache were worth it to be holding this tiny human being and to be able
to call him my son,” Jess says. “Words really cannot describe the
feeling. He is a blessing, and we will cherish every moment with him.”

Note:
A version of this story previously was published in
Hometown
Health
.


HELPFUL
LINKS

Mon, May 13 5:00am · Prompt Diagnosis and Expert Care for Guillain-Barre Syndrome Save Rich Bradley's Life

Rich Bradley was about to travel to Europe to learn more about his late uncle's heroism during World War II when he suddenly faced a battle of his own — a severe form of Guillain-Barre syndrome that required specialized care at Mayo Clinic.

Rich Bradley was about to travel to Europe to learn more about his late uncle’s heroism during World War II when he suddenly faced a battle of his own — a severe form of Guillain-Barre syndrome that required specialized care at Mayo Clinic.




In September 2018, Rich Bradley was
about to embark on the adventure of a lifetime. He had traveled to
Jacksonville, Florida, to meet up with his cousin, Kenny. They were flying to
Normandy, France, two days later to retrace the steps of their uncle, a
decorated World War II hero.

“He was awarded three Silver Stars,
two Bronze Stars and a Purple Heart,” Rich says. “I wanted to write a
memorial biography about him.”

But once Rich arrived in
Jacksonville, a pain in his right arm that he’d felt a few days earlier became
sharp. His cousin took him to a local emergency department. After staying overnight
for observation, Rich returned to his cousin’s home. That afternoon, the pain
continued to get worse, and it radiated to his chest. Rich returned to the same
emergency department, but he was discharged again.

“Kenny drove me back to his
place, and when I tried to get out of his truck, I collapsed,” Rich says.
“I couldn’t stand up.”

Still in considerable pain the next morning, Rich began to suspect his symptoms were neurological. He got on the internet and Mayo Clinic appeared at the top of his search results.

Rich had been a patient at Mayo Clinic’s Rochester campus for 15 years for a congenital heart defect, and his family had a long history of receiving care there. He knew Mayo Clinic was where he wanted to be evaluated. After collapsing again, he was taken to Mayo Clinic’s Florida campus by ambulance.

A severe form of a rare disease

“I felt my life slipping away
on the way to Mayo. I lost hope,” Rich says. “But when they opened
the doors to the ambulance, and I saw about 30 people standing there, I began
feeling hopeful because somebody was taking this seriously.”

Rich remembers being in a room
surrounded by several doctors. “I’m looking around, and I see this man
with white hair, a white beard and a red vest. He says it’s Guillain-Barre,'”
Rich recalls. “I later found out he was neurologist Benjamin
Eidelman, M.D.

Guillain-Barre syndrome is a rare disorder in which the body’s immune system attacks the nerves. In severe cases, it can result in complete paralysis.

“You start getting tingling
and pain in your extremities. It usually starts in the toes and moves up. Over
the course of a few days, it migrates up the legs, fingers and arms,” says
Jason
Siegel, M.D.
, a neuro-critical care physician who was a member of Rich’s
Mayo Clinic team. “The most worrisome symptoms are when you can’t swallow
and your diaphragm stops working.”

“The care I got at Mayo was the best I’ve ever experienced in my life. This is the most phenomenal hospital in the world.”

Rich Bradley

Rich’s was a severe case, affecting his ability to swallow, cough and breathe. At Mayo Clinic hospital, he was placed on a ventilator and required a feeding tube. During 2½ weeks in the ICU, Rich underwent five days of plasma exchange to remove antibodies that were contributing to his immune system’s attack on the peripheral nerves.

“The care I got at Mayo was
the best I’ve ever experienced in my life,” Rich says. “This is the
most phenomenal hospital in the world. There was someone checking up on me
constantly.”

Rich was transferred from the ICU
to inpatient rehabilitation. But four days later, he had a relapse and returned
to the ICU. Rich underwent another course of plasma exchange and was released
two weeks later.

“Dr. Siegel always came in
with the other doctors to see how I was progressing,” Rich says. “He
was so nice and encouraging, and answered all of my and my wife’s questions.”

That clear communication is
crucial, according to Dr. Siegal. “The time we take to explain a patient’s
condition, that’s a big part of why we’re different,” he says.

After a third relapse, Rich was hospitalized again and received intravenous immunoglobin therapy, or IVig, and steroids. He also began physical and occupational therapy.

“Immunoglobulin containing healthy antibodies from blood
donors can block the activity of damaging antibodies which are causing
Guillain-Barre syndrome,” Dr. Siegel says. “After we discharged him,
Mr. Bradley got weekly infusions of IVig for six weeks, along with
steroids.”

The road to a full recovery

Rich returned to his home in
Wheaton, Illinois, and did inpatient rehabilitation for six weeks, followed by
outpatient physical therapy. He’s been walking with a walker and expects to
transition to a cane by the end of May.

“There are many presentations
of Guillain-Barre,” Dr. Siegel says. “In the most severe cases, like
Mr. Bradley’s, the immune system not only attacks the myelin sheath that covers
the nerves, it attacks and damages the nerves themselves, and those regenerate
slowly — about 1 millimeter a day.”

“The care and compassion at Mayo were overwhelming.”

Rich Bradley

Rich is excited about the progress
he’s made after battling such an aggressive form of Guillain-Barre. “I can
walk and talk again. I can feed myself,” Rich says. “I can do all the
regular things I need to do. I’m very grateful for the care I received at
Mayo.”

Rich’s eating habits changed drastically while he was in the hospital, and he’s taking advantage of his second chance to adopt a healthier diet. Diagnosed with diabetes 10 years ago, Rich has been off his diabetes medication for two months thanks to his new diet. His care team plans to reassess whether he can continue to stay off the medicine.

“The care and compassion at
Mayo were overwhelming. The physical and occupational therapists were
enthusiastic and got me to do things I never thought I could have done,”
Rich says. “The nursing staff was awesome. I can’t say enough about them.
I felt loved and cared for.”


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Fri, May 10 5:00am · Mother's Day Has Special Meaning After Stroke and Heart Surgery

After weathering a stroke and heart valve replacement, the prospect for Ashley Zimmerman to fulfill her dream of becoming a mom seemed dim. But with guidance and care from Mayo Clinic specialists, now Ashley is looking forward to celebrating her first Mother's Day with her baby boy.

After weathering a stroke and heart valve replacement, the prospect for Ashley Zimmerman to fulfill her dream of becoming a mom seemed dim. But with guidance and care from Mayo Clinic specialists, now Ashley is looking forward to celebrating her first Mother’s Day with her baby boy.




Marking the milestones in a child’s life is a typical part of parenting for most moms and dads. But for 29-year-old Ashley Zimmerman, those celebrations are particularly sweet, considering her journey to motherhood — a journey that was almost halted by a stroke and emergency heart valve surgery.

When she was younger, Ashley couldn’t wait to get married and start a family. But then in 2014, when she was 24, the New Hampshire native was taken to a local emergency department with a high fever and chest pain. While waiting for a diagnosis, Ashley suffered a stroke — the result of a blood clot in her heart. Ultimately, that led to a diagnosis of endocarditis, an infection of the heart lining, and emergency open-heart surgery to replace a damaged mitral valve.

“It all happened so fast that
I didn’t realize how very life-changing it would be,” Ashley says.

During the surgery, Ashley received a new mechanical mitral valve. Though the new valve effectively replaced Ashley’s old one, the carbonate in the mechanical valve activated her body’s clotting system. As a result, Ashley had to take a daily oral dose of the blood-thinning medication Coumadin to prevent the formation of blood clots and reduce the risk of another stroke.

“The doctors told me I would
still be able to do certain things, but that I had to monitor everything I eat
and drink, and have my blood levels checked weekly,” Ashley says. They
also advised her against getting pregnant.

Finding a way

Two months after her surgery,
Ashley married. She and her husband relocated to Jacksonville, Florida, to be closer
to his family. At that point, Ashley’s wish to start a family led her to seek a
second opinion on her medical condition.

“I was going to a local
community cardiologist and mentioned my pregnancy desire. I was told it wasn’t
a good idea. But I knew there had to be a way,” says Ashley, who began
researching options.

“Dr. Phillips said that although it wasn’t going to be the easiest journey, it could be done. She gave me such hope.”

Ashley Zimmerman

Enter Sabrina Phillips, M.D., a Mayo Clinic cardiologist who specializes in maternal cardiology. Dr. Phillips works with women with congenital heart disease or other cardiac anomalies that affect their ability to conceive and have a healthy pregnancy and delivery. Maternal cardiac disease complicating a pregnancy occurs in approximately 1% to 3% of pregnancies.

It was late 2017 when Ashley met with Dr. Phillips at Mayo Clinic’s Florida campus. “I felt a little lost and sad at first. But Dr. Phillips said that although it wasn’t going to be the easiest journey, it could be done,” Ashley says. “She gave me such hope.”

Armed with a plan

Because of Ashley’s condition,
everything, including conception, had to be planned. “Pregnancy with a
mechanical valve is one of the highest-risk cardiac situations of maternal
cardiology,” says Dr. Phillips, noting the blood-thinning medication
causes significant risk to the mother and baby.

Ashley admits that, at times, she
and her husband were conflicted about pregnancy. “We went back and forth
with having a child or not to have a child,” she says. “But we
decided to try at least once. And if it didn’t happen, then it wasn’t meant to
be.” 

Ashley remembers well the day in February 2018 when she began to feel unwell at
work. “We were actively trying to get pregnant then, so I went home and
took a test. I was a little shocked and in disbelief when it came back positive,”
she says. “A lot of emotions were running through my head. I was excited
and nervous.”

Ashley recalls her greatest fear
was the possibility of significant health issues. “It was just really
scary to think that either the baby or I could have a clot or, later, have
bleeding,” she says.

“The difficulty with pregnancy
with a mechanical valve is the fact that Coumadin crosses the placental barrier
and can affect the fetus,” Dr. Phillips says. “During embryo genesis,
when the fetal organs are being made, Coumadin can result in birth defects.”

“The team at Mayo Clinic was amazing. They really listened to me and helped me understand my options.”

Ashley Zimmerman

After the first trimester, the risk
is bleeding in the fetal brain, she adds. “It is imperative to come up
with alternative strategies for blood clot protection during each stage of
pregnancy and delivery to provide optimum protection to the mom with minimal
risk to the baby.”

Injectable medications are
typically used during the first trimester, as they do not affect the fetus. But
these therapies require close monitoring with specialized blood testing. During
her first trimester, Ashley received the injections. Then, during her second
trimester, she switched back to oral medication. She
also received monthly ultrasounds to check the baby’s development.

It’s a boy!

The only hiccup in Ashley’s
pregnancy came in the third trimester when she thought she had gone into labor
early. Fortunately, that wasn’t the case. Dr. Phillips worked with Ashley’s
obstetrician to make adjustments.

“It was a very dynamic
time,” Ashley says. “And it was scary — not just for me, but also for
my family and my husband.”

Despite that scare, on Sept. 26,
2018, Ashley welcomed her son, William, into the world. Weighing a healthy 8
pounds, 2 ounces, William was everything his mom had hoped for.

Courtesy of Kristel Rose Photography

“It definitely wasn’t easy,
but having the right doctor at your side makes everything possible,” she
says. “The team at Mayo Clinic was
amazing. They really listened to me and helped me understand my options. They
educated me on all of the possible things that could happen, but they were
willing to work with me to move forward.”

Today, Ashley looks forward to celebrating
her first Mother’s Day with her son, as well as all of the other milestones and
memories to come, particularly enjoying vacations as a family. “We love to
travel. The last trip we went on was in 2017 to Jamaica, right before I got
pregnant,” Ashley says. “I am looking forward to taking a family trip
together.”


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Wed, May 8 5:00am · Tackling a Rare Brain Tumor With Expertise and Skill

Diagnosed with a brain tumor, Marrissa Janssen was scared. Her biggest fear was that doctors wouldn't be able to get rid of the entire mass. But after consulting with experts at Mayo Clinic, Marrissa's fear turned to hope. Now, after surgery and proton beam therapy, the tumor is gone.

Diagnosed with a brain tumor, Marrissa Janssen was scared. Her biggest fear was that doctors wouldn’t be able to get rid of the entire mass. But after consulting with experts at Mayo Clinic, Marrissa’s fear turned to hope. Now, after surgery and proton beam therapy, the tumor is gone.




Sept.
6, 2018, started off as a typical day for 33-year-old attorney Marrissa
Janssen. She was on a conference call at work, trying to share some facts and
figures. “I wanted to say a number, but couldn’t get the words out,”
Marrissa says.” It lasted about 10 or 15 seconds.”

Shortly
after, she experienced tingling and numbness in her arms and legs. Although her
symptoms only lasted a short time, she was concerned. She texted her husband. Suspecting
a stroke, she went to a local emergency department in Sioux Falls, South Dakota.

Scans showed that Marrissa had an unusual mass in her brain. The hospital recommended she go to Mayo Clinic’s Rochester campus for further evaluation.

A team of experts

Five days later, Marrissa and her husband made the four-hour drive from Sioux Falls to Mayo Clinic to meet with neurosurgeon Giuseppe Lanzino, M.D. After reviewing the scans, Dr. Lanzino asked colleague Terence Burns, M.D., Ph.D. for his opinion.

“The
tumor was surrounding a branch of the middle cerebral artery,” Dr. Burns
says. “It was located within the part of Marrissa’s brain that allowed her
to speak. Removing tumors from this area is most safely achieved via awake brain
surgery — a procedure some of my colleagues and I do on a regular basis.”

Awake brain surgery is the safest and most effective strategy for removing tumors from parts of the brain where various important functions are located. During the mapping portions of the surgery, sedation is suspended, so the patient can be fully awake and participate in neurological and cognitive testing.

By
electrically stimulating and briefly inactivating sensitive brain areas affected
by a tumor, the surgeon can determine whether a tumor can safely be removed
without compromising function. Depending on the region of the brain that’s involved,
those functions can include coordination, sensation, language and higher-level cognitive
processes, such as problem-solving.

“Dr.
Burns was confidently soft in the way he delivered the news,” Marrissa
says.

“He
said it was a small tumor with clear margins, or areas where it started and
stopped. He said that after he removed it, he would take a slice of the mass and
send it to pathology to determine if it was cancerous.”

“Dr. Burns was extraordinary. And Mayo, it’s this majestic unicorn. When you’re there, it feels as though this whole team is in place just for you.”

Marrissa Janssen

Marrissa’s
surgery took place the following day. During the procedure, Dr. Burns found
that the tumor appeared quite different than the surrounding brain tissue, with
no obvious evidence of infiltration. Based on its appearance during surgery, Dr.
Burns hoped the tumor would be a pleomorphic xanthoastrocytoma, or PXA, because
complete removal of these tumors typically bodes well for long-term survival.
PXA is an extremely rare type of brain tumor that occurs in less than 1 in 1
million individuals — typically in children and young adults.

A
complicating factor in the surgery was that the section of Marrissa’s brain
responsible for language came up to the edge of the tumor, making complete
removal challenging.

“We
had to accept that if there were any infiltrating cells even slightly beyond
the visible edge of the tumor, we would not be able to safely chase after them,”
Dr. Burns says. “Marrissa and I had agreed prior to surgery that our top
priority was to keep her safe — maintaining her language function and thereby preserving
her quality of life. By the end of surgery, I felt all visibly suspicious areas
for tumor had been removed, and her language function remained intact.”

An unusual finding

When the pathology results returned, they did include certain genetic features of a PXA, as Dr. Burns had hoped. However, the genetics of Marrissa’s tumor showed something more unusual and concerning. Her tumor harbored additional alterations not seen in PXA, but characteristic of glioblastoma — a far more aggressive type of tumor. What it meant to have mixed features intermediate between PXA and glioblastoma was uncertain.

Mayo
Clinic has been actively pioneering the field of glioma genetics. According to Dr.
Burns, the vast majority of people with gliomas have no family history. In most
cases, the genetic changes arise spontaneously, allowing a tumor to develop.

“Identifying
these genetic alterations can help establish a diagnosis and provide insights
regarding response to therapy. However, there are occasional tumors, like Marrissa’s,
that simply defy known classifications,” Dr. Burns says. “It can be quite
a challenge to predict how these will behave, and it requires the wisdom of the
multidisciplinary team to tailor optimal treatment recommendations.”

An excellent result

After surgery, Marrissa met with neuro-oncologists Joon Uhm, M.D., Michael Ruff, M.D., and Ivan Carabenciov, M.D., to craft a treatment plan going forward.

“They were very calm and comforting. They gave me hope, in the sense that my age and overall health were on my side, and that the tumor was missing a lot of markers for an aggressive epithelioid glioblastoma,” Marrissa says. “They indicated that radiation would be part of the care plan and referred me to Paul Brown, M.D., for proton beam therapy.”

Marrissa
began daily proton beam therapy treatments on Oct. 15, 2018, and completed her
last treatment on Dec. 5. “It wasn’t painful, but there was fatigue and some
hair loss, which were anticipated side effects,” she says.

Marrissa’s
follow-up scans in January and April brought good news, with no evidence of any
recurrence of the tumor.

“Dr.
Burns was extraordinary,” Marrissa says. “And Mayo, it’s this
majestic unicorn. When you’re there, it feels as though this whole team is in
place just for you.”

“We may not be able to fully appreciate everything our patients and families are going through at these most vulnerable moments in their lives. But it is a privilege to be there for them and with them as an extended family.”

Terence Burns, M.D., Ph.D.

“In
January, Marissa and her husband sent one of the most beautiful and eloquent
letters I have ever read,” Dr. Burns says. “It reflected on the fear
and sadness in being so abruptly reminded that life is so fragile, yet also on
gratitude for life’s joy and richness, and the gift of time to share memories
with family and friends. We may not be able to fully appreciate everything our
patients and families are going through at these most vulnerable moments in
their lives. But it is a privilege to be there for them and with them as an
extended family.”

Now
Marrissa is savoring life as it comes. She’s returned to work part time while
she continues to fully regain her strength. She also recently traveled to the
New Orleans Jazz & Heritage Festival for the first time with her husband.

“I’m
grateful that no matter what may come, we were given more time to spend
together,” Marrissa says. “I’m thankful that the care team gave us
hope and that my life was worth trying to save.”


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Mon, May 6 7:37am · Genetic Testing Generates Optimism for Ovarian Cancer Treatment

When Jean Niven learned she had ovarian cancer, her desire to find a knowledgeable, compassionate physician led her to Mayo Clinic. Then, when her cancer returned, genetic information opened the door to fresh treatment options.

When Jean Niven learned she had ovarian cancer, her desire to find a knowledgeable, compassionate physician led her to Mayo Clinic. Then, when her cancer returned, genetic information opened the door to fresh treatment options.




Gathering
all the necessary information about a decision prior to making it has always helped
attorney Jean Niven in the courtroom. Nowhere, however, has this habit been
more useful to Jean than the hospital room.

When Jean was diagnosed with ovarian cancer in 2018, she relied on research to guide her to Mayo Clinic. There her medical team supplied her with information, explanations and honesty about her treatment plan.

Jean’s treatment involved two-part chemotherapy and surgery, as well as genetic testing. The results of that testing paved the way for Jean to received targeted therapy against her BRCA1-positive cancer.

“I
do research, and I think it’s important for an individual to be an active
participant in their care,” says Jean, who lives near Pensacola, Florida.

The information Jean received from her team at Mayo Clinic’s Florida campus, including medical oncologist Gerardo Colon-Otero, M.D., in the Division of Hematology/Oncology and gynecological surgeon Tri Dinh, M.D., in the Department of Obstetrics and Gynecology, reassured her she was getting the best care. 

“They
always have answered every one of my questions to the best of their abilities,”
Jean says. “If they didn’t have the answer, they were forthright in
letting me know. I was given first-rate medical advice and care, not just
pacified. I never felt like I was just a number or rushed through the
appointment.”

A history of cancer

Jean is no stranger to medical treatment. On New Year’s Eve 1996, when she was in her late 40s, she was diagnosed with breast cancer. Two weeks after her diagnosis, she underwent a lumpectomy to remove the tumor. Jean also received radiation therapy to treat any residual microscopic cells. At her six-month follow-up appointment, imaging came back negative for cancer cells. Her next scan was negative, as was the following.

For
more than 20 years, Jean’s scans showed no signs of cancer. During this time, Jean,
who has four adult children and several grandchildren, enjoyed good health. She
ate a balanced diet, refrained from drinking alcohol, exercised and enjoyed a
full travel schedule. But in December 2017, just before a vacation to Europe,
Jean began experiencing abdominal pain and bloating. She sought medical advice
from her regular care team but received no definitive answers.

Jean
was exhausted throughout her vacation, she says. “I pushed myself to do
everything I possibly could, but I didn’t have the energy to do everything I
wanted.”

Jean
returned from that trip only to take off on another — this time to watch the
humpback whale migration off the coast of Hawaii’s Big Island. “I had my
itinerary all planned, so I pushed myself to do everything I could, but I
really wasn’t feeling well,” she says. “I was having a lot of
abdominal discomfort, and I didn’t know why.”

Back home, Jean turned to her physician for answers. She received a bilateral mammogram and chest MRI with contrast dye. The MRI came back as abnormal, which led Jean’s oncologist to order a pelvic and abdominal CT scan. The scan revealed tumors on her ovaries and uterus. Jean was connected to a specialist to discuss a treatment plan, but the encounter did not go well.

“When
he was explaining things to me, I had some questions regarding the toxicity of
the platinum-based chemotherapy drugs,” Jean says. “I wanted to know
the potential effects of the drugs on the kidneys, and he just looked at me and
said my hair would grow back. I felt very demeaned.”

Jean
relayed the episode to her former husband, who lives in Jacksonville, Florida. “He
was touting the benefits of Mayo Clinic and was doing some research and said, ‘Please,
make an appointment.’ So I said, ‘OK.'”

A two-pronged treatment
plan

Jean
called Mayo Clinic’s Florida campus and arranged an appointment. In early
April, she made the first of many five-hour drives to Mayo Clinic to see Dr.
Colon-Otero.

“I
knew I was in very good medical hands,” Jean says. “I had very
specific questions, and he was very willing to explain things to me. I wanted
to know why other kinds of therapy were not considered to be an option for me,
and he took the time to explain it. I felt comfortable that I was making the
right choice.”

In addition to seeing Dr. Colon-Otero, who recommended Jean begin chemotherapy immediately, Jean was evaluated by Dr. Dinh.

“The treatment of ovarian
cancer is typically surgery and chemotherapy,” Dr. Dinh says. “When I
trained as a fellow in the early 2000s, and up until 2010, the thought was that
we should always operate on people first to remove everything we can and then
give them chemotherapy.”

“I knew I was in very good medical hands. I had very specific questions, and (Dr. Colon-Otero) was very willing to explain things to me.”

Jean Niven

But a 2010 research study reported
patients with advanced ovarian cancer, such as Jean’s, recover more quickly from
surgery with the administration of neoadjuvant chemotherapy — chemotherapy that’s
given before and after surgery.

“If you’ve already been sick,
with surgery, you get sicker,” Dr. Dinh says. “With the neoadjuvant
approach, you give patients chemotherapy, and you shrink the disease. If you
get them better from the chemotherapy, they actually get healthier. They
improve their diet and nutrition, and so you can do a better surgery. As the
cancer gets smaller, it’s an easier surgery.”

Jean received her first round of
chemotherapy the day after her meeting with Dr. Colon-Otero. Although she
experienced severe side effects that required hospitalization, the medication
reduced her cancer markers by hundreds of points.

“I was told that if it came
down 100 points, they would be ecstatic,” Jean says.
“Fifty points would be in the realm of ‘it’s working’ and more in the
range of their expectations. When I went back and had the blood work done, it
had actually come down almost 500 points. I was very pleased, as were they.”

Genetic testing,
encouraging results

By
the time Jean had her surgery in June 2018, her tumor markers were down by more
than 1,000 points, and only a fraction of the diseased tissue remained. Jean
recovered quickly from surgery, which involved removing her ovaries, fallopian
tubes, uterus and cancerous tumors. After three days, she was discharged from
the hospital, and her son drove her home to Pensacola.

Over
the next two months, Jean received her remaining chemotherapy infusions, which
were administered intravenously over a five-hour period at Mayo Clinic. During
each visit, Jean met with her medical team and learned her tumor markers continued
to decrease. Within two weeks of completing her final chemotherapy infusion in
August 2018, Jean was back to work.

“When
I went in three months after the treatment, they did the CT scan, and that was
fine,” Jean says. “There were no issues there, and the cancer markers
were at 9. When I went back the last time on Feb. 27, that’s when they saw the
issue.”

“Because medicine has expanded so much, it’s critical to have a team of experts who specialize in different areas caring for patients.”

Gerardo Colon-Otero, M.D.

Jean’s
cancer markers increased to 115, and a CT scan revealed two small growths. The
growth of Jean’s cancer so soon after receiving the most effective chemotherapy
against her disease was concerning, Dr. Dinh says. “When you give the best
chemo and have a recurrence right after that, it doesn’t bode well for your
second line of chemo.”

When Jean’s cancer came back, Drs.
Dinh and Colon-Otero brought her case before Mayo Clinic’s tumor board — a
multidisciplinary body comprised of radiation oncologists, gynecologic
oncologists, medical oncologists, radiologists and pathologists.

“Because
medicine has expanded so much, it’s critical to have a team of experts who
specialize in different areas caring for patients,” Dr. Colon-Otero says.

Alternate,
individualized therapy

While the tumor board did not recommend further surgery, an alternate treatment option was available for Jean. Genetic testing she’d received came back positive for the BRCA1 gene.

“That just opened up a whole world of
medications called PARP inhibitors,” Dr. Dinh says.

In
the body, an enzyme known as the PARP protein helps repair damaged DNA in
cancer cells, allowing them to divide. PARP inhibitors work by blocking the
protein from functioning, leaving the damaged cells to die. “What we know of PARP inhibitors is
that the response rate is quite good,” Dr. Dinh says.

“What sets Mayo Clinic apart is not just their competency, but their willingness to treat you as an individual and engage you as a patient.”

Jean Niven

In
early April, Jean started on the daily, oral medication. She will continue taking the medication
until it’s no longer effective or something better becomes available to treat
her condition. Jean will be monitored with regular blood tests and imaging, the
results of which will help her team make decisions about the path forward. In
the meantime, Jean’s working full time and enjoying time with her family.

Throughout her treatment journey, Jean
has found the attention and honesty she’s received from her Mayo Clinic care
team to be encouraging and empowering.

“There are a lot of wonderful
doctors. What sets Mayo Clinic apart is not just their competency, but their
willingness to treat you as an individual and engage you as a
patient,” Jean says. “You feel that dynamic. It gave me an optimism
about my treatment because I felt fully informed, and I felt like I was a
partner in making these choices. And that to me was incredibly important.”


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