The Warning Signal You Shouldn`t Ignore

CANCER
RPCI CANCER TALK BLOG & eNEWSLETTER
For straight talk from RPCI experts and survivors, visit our blog to read patient-focused news you can use
about cancer detection, prevention, research and treatment. Read inspiring stories and learn about the latest
therapies, tips for living with cancer, and much more. Visit RoswellPark.org/CancerTalk.
JULY/AUGUST 2015
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JULY IS BLADDER CANCER AWARENESS MONTH
The Warning Signal You Shouldn’t Ignore
If you see blood in your urine, don’t ignore it. Even if you’re not experiencing pain,
it could be a symptom of bladder cancer, says Khurshid Guru, MD, Department
of Urology, and Director of Robotic Surgery at Roswell Park.
Smoking & Bladder Cancer:
STRAIGHT TALK FROM DR. GURU
Blood in the urine is present in 80-90% of patients at the time of diagnosis.
“Some people figure it’s caused by an infection or kidney stone and don’t take
care of the problem,” says Dr. Guru. “If you have blood in your urine, you should
always tell your primary care physician.”
WHO’S AT GREATEST RISK?
• S
mokers. If you smoke, you’re three times more likely than a nonsmoker to get bladder cancer.
• P eople who have had work-related exposure to o-Toluidine or
aniline, chemical compounds used in the manufacture of rubber,
dyes, pesticides, and pharmaceuticals. “A lot of the Buffalo region
has been involved in chemical industries,” Dr. Guru notes.
• P
eople who smoke and have had workplace exposure to
these chemicals are at much greater risk.
• People with a family history of bladder cancer.
The treatment plan for bladder cancer depends partly on the stage of the disease.
It can involve surgery, chemotherapy, radiation therapy, and/or a biologic therapy
called BCG. Surgery can range from removing just the cancerous areas of the
bladder to removing part of the bladder (partial cystectomy) or the entire bladder
(radical cystectomy).
At Roswell Park, almost all radical cystectomies are performed with robotassisted surgery, which involves smaller incisions and is associated with less pain
than traditional “open” surgery. RPCI is an international leader in this procedure.
Want to know more? Visit www.roswellpark.org/cancer/bladder.
BLADDER CANCER IS COMMONLY
CAUSED BY SMOKING. IF YOU
ALREADY HAVE BLADDER
CANCER AND CONTINUE TO
SMOKE, REMEMBER THAT
ALTHOUGH EARLY-STAGE
BLADDER CANCER CAN BE
TREATED SUCCESSFULLY, IT IS
LIKELY TO COME BACK (RECUR)
IN THE FUTURE. CONTINUING
TO SMOKE CAN INCREASE THE
AGGRESSIVENESS OF THE
CANCER IF IT DOES RETURN.
SMOKERS NEED TO UNDERSTAND
THE RISKS AND STOP.
RPCI patients and their families can get help from RPCI’s Just
Breathe program. (For information: 1-877-ASK-RPCI.) Or contact
the New York State Smokers’ Quitline at RPCI, at 1-866-697-8487.
Stay
Connected:
Questions? Comments? Contact 1-877-ASK-RPCI or askrpci@roswellpark.org
29014
$10 Million Grant
Accelerates
Photodynamic
Therapy (PDT)
Research at RPCI
THE GOAL: A MORE EFFECTIVE, LESS-HARSH TREATMENT FOR HEAD & NECK CANCERS
With $10 million from the National Cancer Institute, over the next five years Roswell
Park researchers will accelerate their work on photodynamic therapy (PDT) for head &
neck squamous cell carcinoma (HNSCC), a type of cancer that is often difficult to treat.
The number of people diagnosed with HNSCC is rising, due partly to an increasing
number of cases of throat cancer caused by the human papillomavirus (HPV).
Outcomes for head & neck cancers have remained largely the same over the past 30
years, and the prognosis is usually poor for late-stage or recurrent disease. Although
surgery, radiation, and chemotherapy can effectively treat early-stage disease, those
therapies can have a serious impact on the patient’s quality of life, changing facial
appearance and making it difficult to chew, swallow, and speak.
It’s hoped that PDT will be a more effective and less harsh alternative. Developed
at Roswell Park, it uses laser light to activate a nontoxic, light-sensitive drug given
intravenously. The reaction triggers three things: it kills cancer cells directly, shuts
down the creation of new blood vessels that would otherwise “feed” the tumor, and
activates the immune system to destroy cancer cells throughout the body.
Previous studies have shown that PDT is safe and well-tolerated for early-stage
cancers of the oral cavity/oropharynx and larynx, and that it results in excellent
outcomes for both early- and late-stage HNSCC, preserving patients’ appearance and
ability to chew, swallow, and speak. Side effects are minimal and mostly involve a
temporary sensitivity to light.
RPCI has been a world leader in developing and refining PDT, which is FDA-approved
for treating esophageal and non-small cell lung cancer. RPCI’s PDT Center also treats
many skin, lung, gynecologic, esophageal, and oral cancers, plus Barrett’s esophagus
and other precancerous conditions.
Directed by Sandra Gollnick, PhD, Director of the Photodynamic Therapy Center, the
PDT research initiative will include three projects:
• C
linical trials involving Roswell Park, the University of Minnesota, the
University of Rochester, and Johns Hopkins University, in collaboration with
Photolitec LLC, Buffalo, NY. The clinical trials will evaluate PDT’s effectiveness
when it is the first therapy to be administered for treating early-stage
disease, and will assess its ability reduce the toxic effects of chemotherapy in
treating recurrent and advanced head & neck cancers.
• Research
into how PDT can be improved by enhancing cancer cells’ ability to
absorb and hold the photosensitizing drugs, based on specific characteristics
of tumors.
• An
investigation of how the treatment triggers an immune response
throughout the body that may combat metastatic disease.
Dr. Gollnick said she and her colleagues “believe that successful completion of this
program will transform PDT into a standard-of-care treatment for these malignancies.”
BOSOM BUDDIES:
LET’S GO!
Lace up your Keds and join us for the 21st annual Bosom
Buddies Walk to support breast cancer research at Roswell
Park and the services of the Western New York Breast
Resource Center. It takes place Saturday, Sept. 12, at
Healthy Zone Rink in East Aurora, and you can choose from
three different routes: 1.5 miles, 3 miles, and 5 miles.
You can feel good knowing that 100% of the funds raised
stay right here in Western New York. Last year nearly 500
participants raised $94,000 for these important projects.
Register now at bosombuddieswalk.org.
FACING CANCER AS A
PATIENT OR CAREGIVER?
CHAUTAUQUA RETREAT
OFFERS PEACE
Feeling stressed and overwhelmed by cancer? Take time out
for “Nurture Your Hope,” a weekend retreat at the Chautauqua
Institution, set on beautiful Chautauqua Lake, about an hour
and a half southwest of Buffalo. Sponsored by the RPCI
Pastoral Care Department, the event takes place Friday, Sept.
18, and Saturday, Sept. 19.
The program includes meditation, small-group conversations, quiet time for solitude and
personal reflection, and special sessions on yoga, healing touch, massage, and fighting fatigue.
Artist Jeannette Pikturna will lead a painting exercise focusing on hope.
The retreat is open to everyone, regardless of faith tradition (and including those with no
religious affiliation). Participants must have received a cancer diagnosis, be physically able to
move between buildings, and be accompanied by one companion/caregiver.
Cost is $25 per person, which covers overnight accommodations, meals (vegetarian on
request), snacks, and retreat materials. Transportation to and from the Chautauqua Institution
is the responsibility of the participant.
Registration is limited to 24 people,
For more information,
with reservations available on a firstplease call Pastoral
come, first-served basis.
Care at 716-845-8051.
IF IT’S WEDNESDAY,
HEAD OUTSIDE TO THE
FARMERS MARKET
The Farmers Market at Roswell Park runs every
Wednesday from 11 a.m.-2 p.m., through September
30, in Kaminski Park and Gardens, adjacent to the
hospital. Meet local vendors and shop for fresh fruits
and vegetables, salsas and sauces, treats for your pet,
flowers and plants, baked goods, and gifts.
EXPERIENCE PURPLE RAIN AT
SUMMER SPLASH
PATIENT EDUCATION NOTES
Patient Safety:
Identifying the Best Vein
It’s more common to have blood taken from a vein than
to have medications infused into one. So why doesn’t the nurse who
gives you chemotherapy use the same vein as the phlebotomist who
draws your blood?
VEINS & ARTERIES:
APPLES & ORANGES
Your heart and blood vessels form a closed loop that keeps blood
flowing through your body, delivering oxygen to your cells and
carrying away waste products. The blood vessels — arteries and
veins — are different from each other.
ARTERIES…
• Have thick (muscular) walls, because the
blood being pumped from the heart puts
great pressure on them.
• Have internal pressure strong enough to fight
gravity and push blood up to your brain.
Ahhh… A warm evening on the waterfront, food from
some of Buffalo’s finest restaurants, a rockin’ dance party,
and good friends. Summer Splash is the perfect way to
celebrate summer while supporting pediatric cancer research
and pediatric patient support programs at Roswell Park.
The theme for this year’s colorful event is “Purple Rain,” so
deck yourself out in grape, violet, lavender, or plum and join us
Friday, August 14, from 7-11 p.m. at Buffalo Harbor State Park.
You’ll have a chance to win fabulous prizes, including a free entry to
win a new car!
VEINS…
• Carry blood toward the heart. In most cases,
blood in a vein has a low level of oxygen and
contains more waste products.
• Have thinner walls and lower pressure on the
inside. The lower pressure can make it more
difficult for the blood to return to the heart, so
veins have one-way valves in them to prevent
blood from pooling or flowing backward because
of gravity or other forces.
• Have a wider diameter than arteries and can hold
more blood. At any given time, most of our blood
is in our veins. This “extra” blood means that
losing small amounts of blood doesn’t harm us.
• B ecause of their thinner walls, larger diameters,
larger blood volume, and lower pressure, veins
are the preferred access point for drawing blood
or giving fluids and medications.
Tickets are $75 when you buy them online in advance;
save $50 when you buy six for $66.67 each.
Tickets will be available at the door for $100.
For more details, or to purchase tickets,
visit summersplashbuffalo.com.
One Mission delivers news, information, and stories of hope and inspiration to the patients and families served by Roswell Park Cancer Institute (RPCI),
in keeping with RPCI’s mission to understand, prevent, and cure cancer. This patient newsletter is written, created and designed by RPCI’s Department
of Marketing, Planning, Public Affairs and Customer Relationship Management, with content contributed by various departments at RPCI.
Questions? Suggestions?
Email RPCInews@roswellpark.org or write to: Public Affairs Office,
Roswell Park Cancer Institute, Elm & Carlton Streets, Buffalo, NY 14263.
• Carry blood away from the heart. In most
cases, blood in an artery has a high level
of oxygen and few waste products.
DRAWING BLOOD VS.
GIVING MEDICATIONS
When drawing blood, the phlebotomist
chooses a vein that will allow quick,
easy access; has good blood flow; and
will cause the least discomfort to the
patient. Blood is often drawn from a vein
near the crease of the elbow.
When giving medication, a nurse must
find a vein that is large, smooth, and
pliable. (Chemo can make veins less
elastic and smaller in size.) The nurse
will start looking in the hand and move
up the arm. (Starting lower helps save
higher access sites for the future.)
During this process, the nurse also
needs to think about whether the
medication will irritate the vein, and
how long the infusion will last.
These “best practices” are based
on research and supported by
professional organizations such as
The Oncology Nursing Society (ONS).
They specify both what should be
done and what things to avoid —
for example, using veins in the inner
elbow (where blood draws commonly occur), the
dominant arm, the inner and upper surfaces of the
wrist, the legs, or areas at risk for complications
(areas of pain, infection, inflammation, bruising,
poor circulation, and those affected by previous
medical procedures).
We hope this “road map” of your circulatory
system will help you better understand why and
how we take great care in selecting the right
veins during your care. If you have questions, your
chemotherapy nurse will be happy to help you.
Information on this page is provided by Roswell Park’s Patient
Education Department. Questions or comments? Please call
716-845-8784.
THE
PAT I E NT
EXP ERIENCE
Information on this
page is provided by
Roswell Park’s Office
of the Patient/Family
Experience. Questions
or comments? Please call
(716) 845-8114.
WHEN THE DIAGNOSIS IS CANCER:
FROM DAY ONE,
Emese Zsiros, MD, PhD
with patient
When you find out you have cancer, the world turns upside down. Anxiety
and an overload of information can make it difficult to find the way forward.
If you’re feeling overwhelmed, here are five tips that can help:
1) Keep in mind that more than half of all
people diagnosed with cancer will be
cured, or their disease will be controlled
effectively.
2) Don’t feel pressured into making
important decisions too quickly.
Except for cases of acute leukemia and some unusual conditions, you
don’t need to rush into treatment. Take time to let things sink in, and
consider your choices carefully.
3) Think about getting a second opinion.
A second opinion is always a good idea, but it’s especially important
if your physician has not given you a full, clear explanation of your
pathology report, in words you understand; or insists that you don’t
need a second opinion; or wants you to start treatment immediately.
4) Learn about your illness and the
treatments available.
This will prepare you to make sound decisions that are right for
you. Be sure to search for information from reliable organizations,
including the National Cancer Institute (NCI), at cancer.gov; the National
Comprehensive Cancer Network (NCCN), at nccn.org/patients; and the
Roswell Park Cancer Institute website, at roswellpark.org.
FIVE THINGS TO REMEMBER
Roswell Park’s Resource Center for Patients and Families, located inside
the Sunflower Café on the first floor of the hospital, is another great place to
pick up cancer-related publications or get help finding reliable information
on the web. Breast cancer patients can find information and support from
the Western New York Breast Resource Center at Roswell Park.
As you search for information, use a notebook to keep track of what you
learn and write down any questions you might want to ask your doctor.
5) Zero in on the right care.
As you look for a cancer center, find out what your insurance will cover.
Many health insurance plans have advisors who can help you identify
doctors and hospitals in your plan that have expertise in treating the
type of cancer you have. Insurance plans are all different, so make sure
yours provides access to comprehensive cancer care at centers such as
Roswell Park.
When choosing a hospital, look for quality and safety ratings from
independent organizations. When choosing a doctor, focus on training,
board certification, and experience and skill in treating your type of
cancer. For a helpful sheet of questions to ask, visit cancer.gov/aboutcancer/managing-care/services/doctor-facility-fact-sheet.
Even if the road ahead doesn’t seem clear right now, rest assured that many
resources are available to help you find your way when the diagnosis is
cancer. If you have questions, we’re at your service. We invite you to spend
just one day with us for a consultation with a Roswell Park cancer expert.
Visit www.justonedaywithus.org.
Molecule in
donor cells
may be key
to better
outcomes for
transplant
patients
For patients with leukemia, lymphoma, and other
blood cancers, a blood or marrow transplant (BMT)
can be a potential cure. But when the transplant uses
marrow or blood stem cells from a donor, it can have
two effects — one harmful and the other helpful.
Now, with a five-year, $2.01 million grant from the
National Cancer Institute, Xuefang Cao, MD, PhD,
Department of Immunology, is leading research
aimed at shutting down the bad side effect and
increasing the good one. Both are caused by the
donor’s “killer T cells” — white blood cells that are
part of the immune system.
Oncology
Pharmacists
Staff RPCI’s
New Outpatient
Pharmacy
Xuefang Cao, MD, PhD
Under normal circumstances, T cells are the good guys. Their job is to keep you healthy by finding
and destroying foreign cells in your body, such as disease-causing germs. Here’s the problem:
when they are transplanted from a donor into a patient, they can get confused about what’s harmful
and what’s not, attacking both healthy cells and cancer cells.
• G
raft-versus-host disease (GVHD) is the bad side effect. It occurs when the donor’s T
cells attack the patient’s normal cells. GVHD affects the skin, liver, and digestive system.
While some cases are mild, others can be life-threatening.
• G
raft-versus-leukemia (GVL) is the good, desired effect. It occurs when the donor’s T
cells recognize cancer cells as foreign and attack them.
Dr. Cao and his colleagues believe that turning off Granzyme B, a molecule present in the donor’s T
cells, is the key to alleviating GVHD and increasing GVL. Their theory is that Granzyme B weakens the
patient’s antigen-presenting cells (APC), which are part of the immune system and work by training the
T cells to kill cancer cells. They also believe Granzyme B attacks the patient’s healthy tissue directly.
If they can prove that theory, the team will take the next step in their research, using a virus to enter
the donor’s transplanted cells to deliver “good” genes that can switch off Granzyme B. The success of
that effort could mean longer, healthier lives for patients who undergo a blood or marrow transplant.
Did you know Roswell Park has a new Outpatient Pharmacy in the hospital?
Depending on your insurance plan, now you may be able to have your
prescriptions filled here. Prescriptions can be picked up in person or
delivered to the home or workplace free of charge.
Find out if you’re eligible. Call 716-845-8999 or email RoswellParkPharmacy@roswellpark.org.
The pharmacy is located on the first floor of the hospital, next to the Sunflower Café. It’s open Monday-Friday,
9 a.m.-6 p.m., and Saturday, 9 a.m.-1 p.m. Specially trained oncology pharmacists are on call and available for
consultation after
regular hours.
FOR MORE INFORMATION, VISIT ROSWELLPARK.ORG/PHARMACY.
Rain’s No Match for Riders & Volunteers
20TH ANNIVERSARY RIDE FOR ROSWELL RAISES RECORD $4.5 MILLION
Heavy rain couldn’t keep 8,000 riders from the starting line, or 2,000
volunteers from their work stations during the 2015 Ride For Roswell on
June 26 and 27. Thanks to their dedication and the generosity of many,
many donors, the 20th annual Ride raised a record $4.5 million to support
cancer research and patient-care programs at Roswell Park Cancer Institute.
“The money raised by The Ride For Roswell is critically important to our
ability to find cancer cures and save lives,” said Candace Johnson, PhD,
RPCI President and CEO, and the Wallace Family Chair of Translational
Research. “Because of The Ride’s
success over the past 20 years,
Roswell Park has made great
headway in many areas of cancer
research, including personalized
medicine, cancer vaccines, and
immunotherapy. The funds that
our participants raised this year
will allow us to make even more
progress, and will also help provide
compassionate care programs for
our 31,000 patients.”
Ride Weekend began Friday with the Peloton, a special 12-mile route
from Roswell Park to the University at Buffalo. To qualify for the Peloton,
200 riders each raised more than $1,000 and passed a qualifying ride.
At the starting line outside the Roswell Park hospital, they held up cards
inscribed with the names of patients while looking up toward the hospital
windows, where patients cheered them on. The Peloton riders then rode
two abreast through the City of Buffalo and into the UB stadium.
Their arrival at UB was a high point of the Celebration of Hope, a
community-wide rally against cancer. It featured a Mindfulness Workshop
for cancer survivors and their loved ones, family-friendly tailgate activities,
and an inspirational stage program highlighted by the arrival of the Peloton
and an Olympics-style procession of cancer advocates, researchers, and
cancer survivors. The night concluded with a free concert by country
music star and cancer advocate Kellie Pickler.
The next day, The Ride drew cyclists of all ages and abilities on routes
ranging from three to 45 miles.
A MAGICAL EVENING FOR YOUNG CANCER PATIENTS & SURVIVORS
A cancer diagnosis prevents many teens from attending their high
school prom. But thanks to generous donors, a Roswell Park social
support program called Teens Living with Cancer (TLC) makes sure
local teens don’t miss out on that milestone — and it’s all free for
the guests of honor.
About 30 patients/survivors and 25 guests attended TLC’s second
annual prom on June 5 at Hotel @ the Lafayette in Buffalo. The
event allows the teens to enjoy prom with other young people who
understand what they’re going through.
Cancer survivor Kelcie Bettingen, 14, was among them. “My
experience at the Teens Living with Cancer prom was amazing,”
she said. “I had all of my friends there and other teens that I never
thought I’d ever meet. I danced like I was the only girl in the world.
That night was the best night in the whole world.”
The Ride has so much meaning for patients,
employees, cancer survivors, and all those
who have been touched by the disease.
The teens attended pre-prom at Roswell Park, where Sephora
volunteers styled the girls’ hair and makeup. Then they were
whisked to the party in a chauffeured limousine to enjoy dinner,
dancing, and an evening to remember.
– Dr. Candace Johnson
The Ride For Roswell is the largest single fundraising event in Western
New York and North America’s largest single-day cycling fundraiser. Since
its first year, the event has raised more than $34 million for Roswell Park
— and has served as a way for the community to contribute substantially
to the fight against cancer.
“The Ride has so much meaning for patients, employees, cancer survivors,
and all those who have been touched by the disease,” Dr. Johnson said.
“It’s a chance to honor a loved one, to make a difference, and to give
hope to those who are fighting. We are so grateful for the support from
the community that has allowed The Ride to be so successful and the
important work at Roswell Park to continue.”
TLC PROM
Cancer survivor Kelcie Bettingen
Visit RideForRoswell.org to view full
results and this year’s photo gallery.
I danced like I was the only girl in the world.
That night was the best night in the whole world.
– Cancer survivor Kelcie Bettingen, 14