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FEATURED
ARTICLE
Robert
Steinberg Remembered
Fundraiser Honored
Founder of Scharffen
Berger Chocolate
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FUNDRAISING
UPDATES
Special
Celebrations
Thanking Your Guests
in a Special Way
READ
MORE
Team In
Training®
San Diego Rock 'n'
Roll Marathon and America's Most Beautiful
Bike Ride READ
MORE
Light The
Night®
Walk
July and August Free
Gas Promotion
READ
MORE
New Photo Gift Site Benefits LLS
READ
MORE
Volunteer Pete West
Cruisin' For a Cure
READ
MORE
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PATIENT
SERVICES
LLS Focuses on Young
Adult Survivorship
READ MORE
Welcome
Back: Summer is a Good Time to Take Advantage
of Back to School Programs READ
MORE
New Co-Pay Application
Feature READ
MORE
Patient Aid - Industry Partners Step Up
to Help LLS READ
MORE
Featured Resources
READ
MORE
RESEARCH
Q&A w. Katherine
Borden READ
MORE
ASCO: Experimental
Lymphoma Vaccine READ
MORE
ADVOCACY
Parity Sought Between
Patient Cost of I.V. vs. Oral
Chemo
Medications
READ MORE
FROM THE
LLS BLOG READ MORE
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 Robert Steinberg's
Sweet Legacy
Chocolate and beer? Together?
This seemingly odd pairing offers
"palate-pleasing sensations for the
epi-curious," says Jim Javenkoski, Ale-vangelist
for Arcadia Brewing Company. Since discovering
the sensory energy between strong dark ales and
Scharffen Berger chocolate, he has promoted how
beer lovers and chocoholics alike can enjoy this
uniquely delicious tasting
experience.
During the past five years,
Jim has conducted beer and chocolate pairing
seminars across the country, including several
that were presented with Robert Steinberg, the
creator of Scharffen Berger chocolate. A doctor
with an active practice in San Francisco, Robert
retired from medicine when he was diagnosed with
chronic lymphocytic leukemia (CLL) in the late
1980's. He chose to follow a long-time passion -
cooking. A frequent traveler through Europe,
Robert became fascinated by fine chocolate. He
apprenticed to a small, traditional chocolate
maker in Lyon, France and journeyed through
South America to learn the nuances of cocoa
beans.
In 1996, in partnership with a
friend, John Scharffenberger, Robert formed
Scharffen Berger and opened a small factory in
San Francisco. Food writers and a
chocolate-craving public soon agreed that Robert
had created an excellent chocolate, worthy of
its European rivals. And the rich, complex
flavor profile of that confection is what
inspired Jim to pair Scharffen Berger's
highly-regarded chocolate with his deliciously
dark, refermented ales.
In September
2008, about two decades after his diagnosis,
Robert lost his battle with blood
cancer.
In honor of Robert's remarkable
legacy and the people he touched in both the
confection and brewing industries, members of
the specialty food industry met at Hopleaf Bar
in Chicago to pay tribute to him. The funds
raised at that night's ale and chocolate seminar
were donated to The Leukemia & Lymphoma
Society and specifically dedicated to research
on CLL, the disease that took Robert's
life.
So, with goblets of dark ale raised
and Scharffen Berger chocolates in-hand, Jim and
his colleagues fondly remembered a man whose
life and legacy have sweetened so many
lives.
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Thank Your Guests in a
Meaningful Way
In lieu of party favors, hosts of
weddings and other special occasions are
choosing to make a donation to The Leukemia
& Lymphoma Society (LLS) to support blood
cancer research and help make a difference in
the lives of patients and their
families.
"My fiancé (Tom Van Orsouw) and I were
looking for a simple, meaningful way to thank
our guests for sharing our day with us, and we
felt that the special occasion cards were
perfect," explains Lisa Sisson of Wakefield, RI.
"Rather than the typical favors that can often
times feel excessive and wasteful, we knew that
it was a great way to make our family and
friends aware of The Leukemia & Lymphoma
Society. We were also happy to make a donation
in honor of our friend, Scott Sherwood, who has
been living with lymphoma for a few years, and
is currently recovering from a stem-cell
transplant. We are thrilled to have him attend
our wedding!"
Participants in the program can order
white or ivory colored cards for each place
setting at the party. The card includes the
names of the bride and groom or whoever the
celebration is commemorating, and they can
personalize the text as they chose, such as by
honoring a blood cancer survivor or in memory of
a loved one. The cards state that the hosts have
made a donation to LLS to thank their guests for
sharing their special day with them.
Ron
Barthel of Sandy Hook, CT, said he and his
fiancée, Angela Towne, chose to use LLS's
special occasion cards as favors for their
wedding guests because Angela, a Hodgkin
lymphoma survivor, received a lot of support
from LLS and they wanted to highlight the
organization to their guests.
"We also
wanted to show the importance of continuing to
give, no matter the times," Barthel
said.
Cards can be purchased at $3 apiece
and are sent in quantities of 25.
For
more information visit www.lls.org/specialoccasions
Contact Rosanna D'Angelo at (888)
773-9958 or donorservices@lls.org
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Rock
'n' Roll Marathon and a Century
Ride
Team In Training (TNT) sent 2,245
participants to the 12th annual San Diego Rock
'n' Roll Marathon on May 31, and they raised
$8.2 million (net) to help fund lifesaving
research for leukemia, lymphoma and myeloma, and
bring hope to thousands of blood cancer patients
and their families.
 There was also a
special surprise in store for one TNT
participant in San Diego. CGI, the event organizer for all of the
Rock 'n' Roll events, announced that TNT
participant Nichole Beattie of Long Island,
N.Y., was the two millionth finisher since the
Rock 'n' Roll series of marathons began. Beattie
was awarded $500 and some other gifts.
The top TNT fundraiser at San Diego was
Eliana Wolpe, of Los Angeles, who raised
$103,000. Wolpe, wife of world-renowned Rabbi
David Wolpe of Sinai Temple in Los Angeles, ran
to honor her husband's battle with lymphoma, as
well as her own victory against
cancer.
TNT also sent 1,511 participants
to America's Most Beautiful Bike Ride in Lake
Tahoe on June 7, and those participants raised
$6.8 million. William Kenny of Rockland County,
N.Y., was the top fundraiser, raising $52,122.
Kenny has raised more than $120,000 over the
past three years.
Visit www.teamintraining.org to learn more.
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Get Free Gas and Help Save a
Life
 The difficult
economy may be putting the brakes on Americans'
summer travel plans, but The Leukemia &
Lymphoma Society (LLS) is providing some relief
by offering free gas cards in July and
August.
Light The Night® Walk
participants doing online fundraising can earn
$50 worth of free gas for every $500 they raise
during July and August. For every $250 raised
online, $15 gas cards will be earned. The cards
will be available while supplies last.
"Light The Night Walk, LLS's annual
evening fundraising walk, is the nation's
opportunity to pay tribute and commemorate lives
touched by blood cancer," said Nancy L. Klein,
LLS's chief marketing and revenue officer.
"The goal of finding cures and helping patients
is a great motivator, in and of itself. But in
this tough economy, LLS saw this 'Save at the
Pump' promotion as a great added incentive to do
something good and get something
good!"
Light The Night Walk events take
place in communities around the country in the
fall, with teams of co-workers, families and
friends walking together in twilight holding
illuminated balloons - white for survivors, red
for supporters and gold to remember those lost
to cancer. Funds raised help LLS support
cutting-edge research and provide critical
patient services.
For more information
about the gas promotion or to learn more about
Light The Night, call (877) LTN-WALK or visit
www.lightthenight.org/freegas.
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New Photo Gift Site Donating Proceeds to
The Leukemia & Lymphoma
Society
The
Leukemia & Lymphoma Society (LLS) has a new
relationship with a leading vendor of photo
imprinted gifts - Imagine Your Photos. LLS
staff, donors and supporters can order items
imprinted with their favorite photos and 40% of
all sales are donated to LLS.
You can select
from over 300 items for
personalization. Just
click on this
URL:
www.llsphotogifts.org and make your
selection from a wide variety of gifts, from
aprons to wooden puzzles, milk chocolates to
watches. Simply upload photos featuring your
Light The Night®
Walk or Team In Training team. You can
also upload logos, or you can imprint photos of
your child, pet or special occasions, such as
proms or graduations.
Items start at
$6.95 and up. The photo site has a number of
tint enhancements you can select in order to
customize your purchase even more.
Back to
the top
 Cruisin' For a Cure
Super
Volunteer, Pete West, of San Antonio, TX, has
hit the road on an around-the-country motorcycle
ride to raise awareness and funds for The
Leukemia & Lymphoma Society (LLS). Cruising
on his 2007 Honda Goldwing GL1800, decked out in
LLS insignia, West has set his goals high. He's
been visiting cancer centers across the country,
traveling 11,000+ miles in one month, trying to
raise funds to fight blood cancers as he goes.
So far his visits have included the Mayo Clinic
in Rochester, MN, the Cleveland Clinic, the Ohio
State James Cancer Hospital and Solove Research
Institute in Columbus, OH, Fred Hutchinson
Comprehensive Cancer Center in Seattle and The
Arizona Cancer Center in Tuscon.
Why's
he doing it? West says, "I have never been
diagnosed with cancer but I have had family
members and friends that have so I want to do my
part to help in my own way and that is to raise
money to help doctors and scientists find a cure
for cancer and find it now!"
West is
riding to honor those who have fought and are
fighting their own battles with blood cancers.
His inspiration to do something grand for LLS
was sparked by his wife, Lisa, who is an avid
member of Team In Training® and has completed two
half marathons to raise money for the
cause.
Pete West's extraordinary journey
began on May 16th. You can follow his incredible
journey on his
blog.
Help him
on his way by donating
to his campaign.
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LLS
Focuses on Young Adult
Survivorship
Young adults between the ages of 18 and
39 who are diagnosed with cancer face unique
concerns such as those related to education,
dating and intimacy, and employment.
"The Leukemia & Lymphoma Society
(LLS) is committed to providing programs and
support services that address the special needs
of this group of survivors," says Carson Jacobi,
vice president, national education programs.
"They have long been a lost group, in between
pediatric and older adult cancer patients, and
they have been a population with limited support
services." This web-savvy socially-networked
population accesses most of its information
online and more needs to be done to deliver
information in a way they can relate to, Jacobi
adds.
LLS has received a grant from
Genentech to create new online programs for the
young adult population in the near future, but
already has a number of resources available for
this age group:
Virtual
lecture. On June 30, the LLS web site
will post a new virtual lecture: "Young Adults with Blood
Cancers: Managing Treatment and
Beyond," during which
the panelists discuss the physical, emotional
and financial challenges faced by cancer
patients in this age group and the gaps in
services. The lecture, recorded during the
annual Oncology Nursing Society conference,
features four experts: oncology counselor Sage
Bolte, MSW, LCSW, OSW-C, of Inova Cancer
Services in Fairfax, VA., and her colleague at
Inova, program manager Eric Cohen, RN, BSN, OCN;
Nicole Rosipal, RN, MSN, CPNP, stem cell
transplant and cellular therapy - pediatrics at
The University of Texas MD Anderson Cancer
Center in Houston, and her colleague at MD
Anderson, Michael E. Rytting, MD, associate
professor of pediatrics. The virtual
lecture program offers
continuing education credits.
Chronic Myelogenous
Leukemia (CML) . There is increasing
interest in pregnancy among younger women with
CML who are in stable remission and in
ongoing treatment with Gleevec. In July, LLS
will publish two updated CML booklets that
include information about CML and pregnancy.
Early reports of stopping treatment in order to
get pregnant were discouraging, with relapse
nearly certain, but further study has given new
hope that women with CML who want to become
pregnant can be better managed with lower risk
to both mother and child.
PS72- CML Guide:
Information for Patients and
Caregivers
PS31- Chronic Myelogenous
Leukemia
Guest
author. A major concern facing young
adults with cancer surrounds issues of intimacy
and sexuality. LLS's web site features an
article on the topic by guest writer, Kris Carr
- author of the book,
"Crazy Sexy
Cancer." In 2003, 31-year-old Kris Carr,
an actress and photographer, was diagnosed with
a rare and incurable cancer. Kris shares her
story of survival experience with creativity,
strength and humor.
Web clips . LLS
offers a web-based program, "Cancer Survivorship
for Young Adults" featuring interviews
with experts Sage Bolte and Eric Cohen,
colleagues at Inova Cancer Services, in which
they discuss a range of topics, including family
and workplace challenges. Another web cast, also
hosted by Sage Bolte, addresses sexuality and
intimacy. The clips, which have had nearly
50,000 visits since being posted, can be found
at www.lls.org/survivorship.
Following are some of
LLS's Young Adult Survivorship Resources:
FS22-Long-Term and Late
Effects of Treatment in
Adults
FS23-Fertility
Webcast-Cancer Survivorship
for Young Adults
Webcast-Sexuality and
Intimacy in Cancer
Survivorship
Please visit the
LLS Community Discussion
Boards:
LLS Blood Cancer Discussion
Boards Survivorship: Life After Cancer
Back to the
top
 Welcome
Back: Summer is a Good Time to Take Advantage of
Back to School
Programs
With summer vacation upon us, this is the
perfect time for school professionals to take
advantage of The Leukemia & Lymphoma
Society's back to school program. "Welcome Back:
Facilitating the Return to School for Children
with Cancer" is an education program for school
nurses and other school personnel discusses
possible emotional, physical and cognitive late
effects of cancer treatment in children and
offers numerous resources that can assist
childhood cancer survivors to flourish in the
school environment post-treatment. Contact your
local chapter patient services
manager for schedule information.
Here are some additional Back to
School Resources:
PS
36 Learning & Living With
Cancer
Advocating for
your child's educational needs
PS
85 Back to School Resources
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the top
 New
Co-Pay Assistance Program Provider Online
Application
The
Leukemia & Lymphoma Society Co-Pay
Assistance program is pleased to announce a new
tool to help providers submit online
applications on behalf of blood cancer patients
quickly and easily. The Co-Pay Assistance
program provides financial assistance for health
insurance payments and blood cancer treatment
co-pay obligations to qualified patients. For
more information, visit www.LLS.org/copay or call (877) 557-2672.
Co-Pay Assistance Program Broadens
Funding
Qualified patients with chronic
myelogenous leukemia and myeloma can now receive
up to $5,000 in assistance from LLS' Co-Pay
Assistance Program . The aid helps
offset prescription drug co-pays and other
insurance-related expenses according to disease
diagnosis.
For more information, visit
www.LLS.org/copay or call
(877) 557-2672.
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Patient Aid - Industry Partners
Step Up to Help LLS 
Responding
to an appeal for help, two companies, Celgene
Corporation and Millennium: The Takeda Oncology
Company, have stepped up to help blood cancer
patients in their time of need with significant
leadership gifts for The Leukemia & Lymphoma
Society's (LLS) Patient Financial Aid
program.
The program provides funds to
help patients access care. Today, more than
ever, patients need financial assistance and
LLS's program was facing a shortfall. The gifts
from Celgene and Millennium will go a long way
toward helping LLS continue to provide
assistance to these patients for such expenses
as travel and other costs related to medical
treatment. The program helps remove barriers to
patients wishing to participate in clinical
trials by helping cover routine care costs. LLS
projects that it will have more than 21,000
patients enrolled in the financial aid program
this year.
"LLS is extremely grateful to
Celgene and Millennium for their generosity,"
said LLS President and CEO John Walter. "Both
companies have been steadfast supporters of
LLS's patient services and education programs
throughout the years, and both are continuing to
demonstrate their commitment to addressing the
financial burden faced by blood cancer patients,
particularly during the current economic
crisis."
To learn how your company
can help, please contact Andi Ciminello at (914)
821-8869, or andi.ciminello@lls.org.
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Featured
Resources
We'd Like to Hear from
You!
Please give us your feedback
after you read an LLS Publication by completing
our evaluation:
LLS Disease & Treatment
Publications - Survey for Patients, Family and
Friends
Featured Materials
FS6-Choosing a Blood Cancer
Specialist or Treatment Center
FS6S-Seleccion de un especialista
en cancer de la sangre o de un centro de
tratamiento (Spanish-language)
PS39-Myeloma
PS49-The Myeloma Guide-Information
for Patients and Caregivers 
Upcoming Telephone
Education Programs 
There are no
scheduled programs in July. Please take
advantage of our free archived educational
programs in any of the following
areas:
Lymphoma Education
Series
Leukemia Education
Series
Myeloma Education
Series
Myelodysplastic Syndromes
Education Series
Survivorship Education
Series
Interactive
Journeys
Featured LLS Web Page
Select Summer Reading
List:
Books for Children - Here's help in answering your
children's questions and addressing their
concerns
Books for Teens - This section lists books that address
the special needs of teens
Books for Parents - This list of books provides
information for parents of children with serious
illness or for children with a family member
with serious illness
Books for Adult Patients and their
Caregivers - The books
in this section offer help and information on a
variety of topics for adult patient and those
who care for them
What to Ask After
Diagnosis
www.LLS.org/whattoask
Healthcare Question
Guides
Taking an active role in making
treatment decisions can have a positive effect
on your health and your quality
of life.
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Katherine L.B. Borden, Ph.D. 
Translational
Research Program grantee Katherine L.B. Borden,
Ph.D., of Université de Montréal, studies
a targeted
therapy for patients with some types of acute
myelogenous leukemia.
What is the biomedical
problem/issue that you are trying to resolve?
We are trying to find new and better
therapies for cancer patients, particularly
those with cancers that involve abnormally high
levels of a protein called eIF4E that can cause
cells to become cancerous. We found that giving
cells a drug, ribavirin, that looks like a small
molecule that eIF4E binds in its normal cellular
role, reduced the abiltiy of eIF4E to cause
cancer. We have just completed a Phase II
clincial trial with this drug, in patients who
had refractory or relapsed leukemia after
standard chemotherapy. We found substantial
clinical benefits, including remissions. By
testing the patients' blood samples, we could
see that we had indeed targeted eIF4E, as we had
hoped.
What's novel or
innovative about your approach?
This
is the first time that eIF4E has been targeted
in patients. Roughly 30% of cancers carry eIF4E
abnormalities, including but not limited to M4
and M5 subtypes of acute myeloid leukemia (AML),
so there may be applications beyond leukemia for
our findings.
How will your work one
day help patients?
I hope that
ribavirin or a combination of ribavirin and
other drugs can produce durable remissions in
patients with leukemia; and eventually with
other malignancies as well.
Are you close to
clinical trials?
Yes, we just
completed a Phase II trial and in the autumn we
hope to carry out a combination trial with
ribavirin and another well tolerated agent to
see if we can overcome resistance to that drug,
which develops in patients after 3-4 months on
average.
What other projects
are you excited about and believe will benefit
patients?
I am very excited about the
combinations with ribavirin and how they may not
only overcome resistance, but possibly improve
the frequency of remissions. I am also excited
to test how ribavirin works in other
malignancies characterized by abnormal eIF4E.
What are
some of your hobbies and non-research interests?
I love to go to the gym, to hike and
to watch Star Trek. However, most of my
non-research time goes into playing with my
three young boys (4 years old and 17
months old twins).
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Zeroing In On a Lymphoma Vaccine
Personalizing
cancer care was a major theme at the 45th Annual
Meeting of the American Society of Clinical
Oncology (ASCO) this month. By tailoring
anti-cancer treatments to the unique genetics of
patients and their tumors, patients can receive
treatments they are most likely to benefit from,
while allowing those who will not benefit to
avoid unnecessary side effects and costs.
Stephen J. Schuster, MD, a researcher
funded by The Leukemia & Lymphoma Society
(LLS), presented some encouraging results from a
Phase III randomized clinical trial for an
anti-cancer vaccine called BiovaxID. Schuster,
of the Abramson Cancer Center of the University
of Pennsylvania, showed that the vaccine delayed
relapse for some patients with advanced
follicular lymphoma. Disease-free survival was
extended on average by more than one year and
the vaccine was well tolerated. Two other
LLS-supported researchers, Christopher Flowers
M.D. of Emory University and Larry Kwak M.D.
Ph.D. of M.D. Anderson Cancer Center in Houston,
were among the co-authors on this study.
The BiovaxID vaccine is made with
lymphoma cells from a lymph node biopsy, fused
with laboratory mouse cells that then produce
large amounts of antibody protein (idiotype)
that is unique to the sampled
lymphoma.
The vaccine took many months to
produce and, therefore, all patients in the
study had to have been in remission for at least
six months at the time they received the
vaccine. Idiotype vaccine benefits may therefore
be limited to patients with durable remissions,
but vaccines can now be made much more quickly
so this possibility can be tested.
In
addition, the study was begun about 10 years
ago, and at that time standard treatment
consisted of a combination of chemotherapy:
prednisone, doxorubicin, cyclophosphamide, and
etoposide (PACE). Since that time the antibody
Rituxan was developed and is now used in
combination with chemotherapy as standard
therapy for follicular lymphoma patients, more
generally using CHOP (cyclophosphamide,
hydroxydoxorubicin, oncovin and
prednisone).
"This study represents a
remarkable initial step and a potentially
exciting new direction in treating patients, but
now we need to see how the vaccine might perform
when combined with newer therapies that weren't
available when the study began," said Barton
Kamen, MD, Ph.D, chief medical officer of LLS.
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Parity Sought
Between Patient Cost of I.V. vs. Oral Chemo
Medications 
Oral chemotherapy
medications, such as Gleevec® , have become the new
standard in treating cancer. The drug,
taken orally as a pill at home instead of
intravenously in a doctor's office, works by
targeting and attacking only cancer cells,
leaving healthy cells unfazed. Gleevec has
a high success rate for patients newly diagnosed
with CML, and has shown promise in treating
several other cancer types.
However, a problem has emerged for
patients - cost. Intravenous chemotherapy
drugs administered at a hospital or clinic are
typically paid for as a medical benefit under a
patient's health insurance plan. But these
new chemo pills are almost exclusively covered
by prescription drug plans, which are not as
generous. Many of these costly drugs have
been placed into the insurer's Tier IV
classification, which can require the patient to
pay a percentage of the drug's cost instead of a
flat-fee co-pay, making the out-of-pocket cost
astronomical in some cases.
Lawmakers are attempting to bring parity
between the costs of intravenous and oral
chemotherapy treatments. Federally,
legislation has been introduced (H.R. 2366) to
amend the Employee Retirement Income Security
Act (ERISA) to require insurers to cover oral
cancer drugs "on terms no less favorable than
the coverage provided for intravenously
administered anticancer medications."
Similarly, 36 bills have been introduced in 23
states, all seeking to require oral
chemotherapies be covered at the same level as
intravenous chemotherapies. Additionally,
two states - Iowa and Oregon - have already
passed laws requiring this parity among the
treatment options.
The Leukemia
& Lymphoma Society (LLS) will continue to
inform volunteers of the progress of these bills
as they move through Congress and their
respective state legislatures, as well as any
opportunities to influence the
debate.
Here's the
latest alert from action.lls.org:
TAKE ACTION: Urge
Your Representative to Join the Pediatric Cancer
Caucus
Back to
the top
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eNEWSLINE is
published by The Leukemia & Lymphoma
Society®
Home Office | 1311 Mamaroneck Avenue
| White Plains, NY
10605
914.949.5213 | www.LLS.org
© 2009 The Leukemia
& Lymphoma Society
All Rights
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| Participating member of An Alliance of
America's Premier Health Charities in the
Combined Federal Campaign, the National
Coalition for Cancer Research and Blood Cancer
Coalition. This publication is designed to
provide information in regard to the subject
matter covered, and is distributed as a public
service by The Leukemia & Lymphoma Society,
with the understanding that LLS is not engaged
in rendering medical or other professional
services.
The Leukemia &
Lymphoma Society® (LLS) is
the world's largest voluntary health agency
dedicated to blood cancer. The LLS mission: Cure
leukemia, lymphoma, Hodgkin's disease and
myeloma, and improve the quality of life of
patients and their families. LLS funds
lifesaving blood cancer research around the
world and provides free information and support
services.
Founded in 1949 and
headquartered in White Plains, NY, LLS has
chapters throughout the United States and
Canada. To learn more, visit www.LLS.org or
contact the Information Resource Center at (800)
955-4572, Monday through Friday, 9 a.m. to 6
p.m. ET. www.lls.org. |
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