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Facts 2008-2009LEUKEMIA LYMPHOMA MYELOMA
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Table of Contents1 Executive Summar y
2 About the Diseases2 Treatment3 Survivorship3 New Approaches to Treatment
6 Leukemia6 Living with Leukemia6 New Cases7 Incidence by Gender7 Incidence by Race and Ethnicity 7 Incidence by Age-Group8 Signs and Symptoms of Leukemia8 Possible Causes of Leukemia8 Treatment of Leukemia8 Survival9 Deaths
10 Lymphoma10 Hodgkin Lymphoma10 Non-Hodgkin Lymphoma10 Living with Lymphoma10 New Cases10 Incidence by Gender10 Incidence by Race and Ethnicity 11 Incidence in Children11 Incidence in Adults12 Signs and Symptoms12 Treatment12 Survival for Adults12 Survival for Children12 Deaths
13 Myeloma
13 Living with Myeloma13 New Cases13 Signs and Symptoms13 Possible Causes13 Treatment13 Survival13 Deaths
14 Myelodysplastic Syndromes14 Incidence by Gender14 Incidence by Race and Ethnicity 14 Survival14 Deaths
15 Incidence Rates: Leukemia, Lymphomaand Myeloma
17 Notes and Definitions
18 About LLS18 Research19 Patient Services20 Advocacy
21 Citations and Acknowledgments
Figures
1 Figure 1: Five-Year Relative Survival Rates, 1960-1963 vs. 1975-
1977 vs. 1996-2004
2 Figure 2: Estimated New Cases (%) of Blood Cancers
in 2008
6 Figure 3: Estimated Proportion of New Cases (%) in 2008 for Each Type of Leukemia, Including Adults and Children
7 Figure 4: Age-Specific Incidence Rates for Acute Myelogenous
Leukemia (All Races), 2001-2005
8 Figure 5: Five-Year Relative Survival Rates for All Ages, All Types
of Leukemia, 1975-2005
9 Figure 6: Five-Year Relative Survival Rates for Acute Lymphocytic
Leukemia in Children Under 15, 1964-2004
11 Figure 7: Age-Specific Incidence Rates for Hodgkin Lymphoma,
2001-2005
11 Figure 8: Age-Specific Incidence Rates for Non-Hodgkin
Lymphoma, 2001-200513 Figure 9: Age-Specific Incidence Rates for Myeloma,
2000-2005
Tables
6 Table 1: The Four Major Types of Leukemia
6 Table 2: Approximate U.S. Prevalence of the Four Major
Leukemias as of Jan. 1, 2005
6 Table 3: Total Estimated Number of New Leukemia Cases in the
United States, 2008
9 Table 4: Estimated Deaths (All Age-Groups) from All Types of
Leukemia in 2008
10 Table 5: New Cases of Lymphoma by Gender, 2008
12 Table 6: Trends in Five-Year Relative Survival Rates by Race for
Hodgkin Lymphoma and Non-Hodgkin Lymphoma
12 Table 7: Estimated Deaths by Gender from Hodgkin Lymphoma
and Non-Hodgkin Lymphoma
14 Table 8: Myelodysplastic Syndromes: Incidence Rates by Age,
Adjusted for 17 SEER Geographic Areas, 2001-2005
15 Table 9: Incidence Rates by Gender, All Races, per 100,000
Population (2001-2005)
15 Table 10: Incidence Rates by Gender, for Blacks, per 100,000
Population (2001-2005)
15 Table 11: Incidence Rates by Gender, for Whites, per 100,000
Population (2001-2005)
16 Table 12: Estimated New Cases of Blood Cancers by Site, by
State, 2008
16 Table 13: Estimated Deaths from Blood Cancers by Site,
by State, 2008
Cover Image Credit: Addenbrookes Hospital / Photo Researchers, Inc. Description: Philadelphia chromosome. Colored light micrograph of a karyotype(chromosome set) with two defective chromosomes (blue). One (right) is from chromosome pair 22, and one (left) is from chromosome pair 9. This defectcauses chronic myelogenous leukemia (CML).
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LEUKEMIA LYMPHOMA MYELOMA
Executive Summary
page 1
Facts 2008-2009, an annual publication, is a compilation of the
most recent data on leukemia, lymphoma and myeloma. The data
within Facts 2008-2009 reflect the most recent statistics available
from SEER, the National Cancer Institute’s Surveillance,
Epidemiology and End Results Program, Cancer Statistics Review
1975-2005 (see Notes, page 17). These data were published online
by SEER, www.seer.cancer.gov, in April 2008. The next SEER
Cancer Statistics Review is expected to be published online in
April 2009.
Leukemia, lymphoma and myeloma are cancers that originate in
the bone marrow or lymphatic tissues as the result of an acquired
genetic injury to the DNA of a single cell, which becomes
malignant and multiplies continuously. This abnormal
accumulation interferes with the production of healthy blood cells.
Highlights from the Report Include:
New Cases• An estimated 138,530 people in the United States will be
diagnosed with leukemia, lymphoma and myeloma in 2008.
• New cases of leukemia, Hodgkin and non-Hodgkin lymphoma
and myeloma will account for 9.6 percent of the 1,437,180 new
cancer cases diagnosed in the United States this year.
• Every four minutes, someone is diagnosed with a blood cancer.
Survival
• An estimated 894,543 Americans are living with leukemia,
Hodgkin and non-Hodgkin lymphoma, myeloma and
myelodysplastic syndromes.
Deaths
• Leukemia, lymphoma and myeloma will cause the deaths of an
estimated 52,910 people in the United States this year.
Five-Year Relative Survival Rates 1960-1963 vs.1975-1977 vs. 1996-2004
100%
90%
80%
70%
60%
50%
40%
30%
20%
10%
0%
S u r v i v a l R a t e s
LeukemiaNon-Hodgkin LymphomaHodgkin LymphomaMyeloma
1960-1963 1975-1977 1996-2004
14%
51%
65%
86%
12%
35%
Figure 1: Sources: SEER (Surveillance, Epidemiology and End Results) CancerStatistics Review, 1975-2005, National Cancer Institute, 2008.
26%
40%
74%
31%
48%
35%
• Every 10 minutes, someone dies from a blood cancer.
This statistic represents nearly 145 people each day, or six
people every hour.
• These blood cancers will account for nearly 9.4 percent of
the deaths from cancer in 2008, based on the 565,650
total cancer-related deaths.
Leukemia:• There are 231,461 people in the United States who are
either living with or are in remission from leukemia.
• In 2008, 44,270 people will be diagnosed with leukemia.
• In 2008, 21,710 people will die of leukemia.
• Thirty-one percent more males are living with leukemia
than females. More males are diagnosed with leukemia
and more males die of it than females.
• Leukemia causes more deaths than any other cancer
among children and young adults under the age of 20.
• In general, the likelihood of dying from most leukemias*,lymphoma and myeloma decreased from 1996 to 2005
(the last year data were available).*except acute myelogenous leukemia (AML), myelogenous and monocyticleukemias, and aleukemic, subleukemic and not otherwise specifiedleukemias.
Lymphoma:• There are 574,525 people living today with lymphoma;
143,814 either have or are in remission from Hodgkin
lymphoma; 430,711 either have or are in remission from
non-Hodgkin lymphoma.
• This year, 74,340 new cases of lymphoma will be
diagnosed in the United States (8,220 cases of Hodgkin,
66,120 cases of non-Hodgkin).
• This year, 20,510 people will die from lymphoma (1,350
from Hodgkin, 19,160 from non-Hodgkin).
• Non-Hodgkin lymphoma is the sixth most common
cancer in the United States, and its age-adjusted
incidence rose by nearly 79 percent from 1975 to 2005.
Myeloma:• There are 63,084 people living today with myeloma.
• This year, 19,920 people will be diagnosed with myeloma
• This year, 10,690 people will die from myeloma.
• From 1975 to 2005, the incidence of myeloma increased
14 percent. Mortality from the disease increased 24 percent.• Incidence of myeloma in blacks is 104 percent greater
than the incidence in whites.
• The median age at diagnosis is 70; myeloma rarely occurs
in people under age 45.
Myelodysplastic Syndromes:It is estimated that there will be 11,000 new cases of
myelodysplastic syndromes (MDS) in 2008 and about
25,473 people are living today with MDS.
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LEUKEMIA LYMPHOMA MYELOMA
About the Diseases
Lymphoma54%Leukemia
32%
Myeloma14%
Figure 2: Source: Cancer Facts & Figures, 2008, American Cancer Society.
Estimated New Cases (%) of Blood Cancers in 2008Leukemia, Hodgkin and non-Hodgkin lymphoma, myeloma
and myelodysplastic syndromes are cancers that develop in
the bone marrow and lymphatic tissues. They are considered
to be related diseases because they each originate in a
lymphohematopoietic (lymph or blood-forming) stem cell.These so-called “blood cancers” probably result from one or
more acquired mutations to the DNA of a single cell, leading
to the production of new mutated cells that multiply and
survive without the controls of normal cells. The
accumulation of mutated (malignant) cells in the marrow,
blood, lymphatic tissue and other sites in the body interferes
with the production of normal blood and immune cells.
These diseases can lead to severe anemia, bleeding and
impaired ability to fight infection.
TreatmentDrug and Radiation Therapy. The dramatic improvement
in managing blood cancers is mainly the result of
chemotherapy (anticancer drugs), usually in combinations of
two or more drugs. Approximately 50 different
chemotherapeutic agents are now used to treat patients with
leukemia, lymphoma and myeloma. Patients with high-risk
subtypes of myelodysplastic syndromes are also treated with
chemotherapy.
Patients with acute leukemia, some types of Hodgkin and
non-Hodgkin lymphoma or myeloma with disease that is
amenable to radiation therapy may receive both primary
chemotherapy and ancillary radiation therapy or radiationtherapy alone.
Blood and Marrow Stem Cell Transplantation. Cancer
treatment with high-dose chemotherapy or radiation
therapy may result in severe injury to blood-forming cells in
marrow. Stem cell transplantation was introduced
approximately 50 years ago and is now standard therapy for
selected patients with leukemia, lymphoma, myeloma and
myelodysplastic syndromes.
Types of stem cell transplants. Syngeneic transplantation
involves the use of donor stem cells from the blood or
marrow of an identical twin. Allogeneic transplantationinvolves the use of donor blood or marrow stem cells, either
from a sibling with the same tissue type or, if a “matched”
related donor is not available, from a matched-unrelated
donor found through a search of the National Marrow
Donor Program registry of tissue-typed volunteers. The
chance of having a full match with a sibling donor is about
25 percent. The efforts of the National Marrow Donor
Program and other donor registries have created a bank of
about 7 million potential donors. As a result, the chance of having a donor can be as high as 80 percent for some
population groups.
Umbilical cord blood, like marrow and blood, is a rich
source of stem cells for allogeneic transplantation,
especially for children and smaller adults. To date, there
have been more than 5,500 cord blood stem cell
transplants from unrelated donors and several hundred
from sibling donors worldwide for patients (mostly
children) with some 70 diseases, including leukemia,
lymphoma and myelodysplastic syndromes. In special
instances, slightly mismatched cord stem cell donors may
be used quite successfully, especially in young children.
The numbers of stem cells in cord blood are often
insufficient for the needs of larger adult patients. Clinical
trials of transplantation with two cord blood units (double
cord blood transplant) have shown promising results with
more rapid engraftment than that seen with single-unit
transplants and improved survival.
Research is being conducted to improve the so-called
“haploidentical” transplant, for which a parent rather than a
sibling could be the donor. Such an approach would greatly
lessen the proportion of children without a suitable donor.
Autologous transplantation is an important therapy that
uses the patient’s own stem cells. Technically this therapy is
“stem cell infusion” and not transplantation since there is
no donor involved. The patient’s blood or marrow stem
cells are collected while he or she is in remission. The stem
cells are frozen and then thawed and infused into the
patient if intensive chemotherapy and/or radiotherapy is
required for subsequent treatment.
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LEUKEMIA LYMPHOMA MYELOMA
“Reduced-intensity allogeneic stem cell transplantation,”
also called “nonmyeloablative” allogeneic stem cell
transplantation is the term for an allogeneic transplant that
uses lower doses of chemotherapy and/or radiotherapy to
prepare the recipient to receive the donor’s stem cells. This
experimental approach decreases the toxicity associated
with the pre-transplant conditioning therapy needed for a
standard allogeneic stem cell transplant. Reduced-intensity
transplants depend on the use of immunosuppressive drugs
to prevent rejection of the graft so that donor immune cellscan engraft and combat the cancer cells. The effectiveness of
reduced-intensity transplantation is due to the graft-versus-
host disease effect of the donor’s lymphocytes on the cancer
cells rather than to the high doses of pre-conditioning
therapy used for standard allogeneic transplantation. If the
results of ongoing clinical trials prove effective, this therapy
will extend the upper age range of patient’s who can benefit
from an allogeneic transplant.
Quality of Life. Improvements in treatment continue to
increase survival for many patients diagnosed with blood
cancers. In addition, research has identified other ways of
improving the quality of care and the health of patients with
blood cancers. Psychosocial problems created or made
worse by a blood cancer diagnosis, such as depression,
anxiety, lack of information or skills needed to manage
illness, lack of transportation or other resources and
disruptions in work or school, can cause added suffering
and interfere with treatment. The Institute of Medicine’s
(IOM) report Cancer Care for the Whole Patient—Meeting
Psychosocial Health Needs (October 2007), identifies
approaches that all cancer-care providers, including those
with the fewest resources, can use to meet the need for
services to address psychosocial needs. The IOM report
recommends that the National Cancer Institute, the Centersfor Medicare and Medicaid Services and all other
organizations that set standards for cancer care incorporate
psychosocial health into their standard of care and into
research topics, policies, protocols and standards.
SurvivorshipRegular medical follow-up enables doctors to assess the full
effect of therapy, detects recurrence of the disease and
identifies long-term or late effects. Cancer survivors should
see their primary-care physicians for general health
examinations and an oncologist for follow-up care related to
cancer. Coordination between specialists and primary care
physicians is essential to provide the best care.
Follow-Up Guidelines for Survivors. The Children’s
Oncology Group has established Long-Term Follow-Up
Guidelines for Survivors of Childhood, Adolescent, and
Young Adult Cancers (www.survivorshipguidelines.org).
Several organizations are working on evidence-based
guidelines for adult blood cancer patients and their
physicians that will standardize follow-up care and increase
awareness about long-term and late effects.
Some treatment centers have follow-up clinics that provide
a comprehensive, multi-disciplinary approach to monitoring
and supporting cancer survivors. Most follow-up clinics
specialize in pediatric cancer survivors, but some follow
adult cancer survivors. Cancer survivors should have
physical examinations yearly or more often, as needed.
Regular examinations may include screening for cancerrecurrence or the development of secondary cancer or other
late effects of treatment.
New Approaches to TreatmentSeveral areas of research have resulted in new approaches
to the treatment of leukemia, lymphoma, myeloma and
myelodysplastic syndromes. For patients with chronic
myelogenous leukemia (CML), Philadelphia-positive acute
lymphocytic leukemia (ALL), lymphoma, myeloma and
myelodysplastic syndromes advances have come from novel
agents used alone or in combination with chemotherapy.
Risk-Adapted Therapy. Research is under way to identify
biomarkers that give physicians information about the type
and amount of therapy needed by different patients who
have the same broad diagnosis. Biomarkers may also be
able to indicate which patients have a higher-than-normal
risk of developing a specific long-term or late effect.
Biomarkers could be high levels of certain substances in the
body such as antibodies or hormones, or genetic factors
that can increase susceptibility to certain effects. Identifying
these biomarkers will allow researchers to develop tests that
can predict what effects an individual is at risk of
developing, thereby allowing doctors to plan treatment
accordingly.
Drugs. In the past decade, several important new drugs and
new uses for existing drugs have greatly improved cure rates
or remission duration for many patients. Imatinib mesylate
(Gleevec®) is now the drug of choice in newly diagnosed
patients with CML. Gleevec blocks the oncogene-encoded
protein product that allows for the development of the
leukemic cell. Gleevec offers several significant advantages
to patients: oral administration, decreased side effects and a
very high response rate. The effectiveness of the drug, its
tolerance by older patients and the projections from the first
six years of clinical trials in newly diagnosed patientsindicate that Gleevec prolongs the duration of remission
and life when compared to former therapy. A minority of
patients do not respond to or tolerate this drug or have
developed resistance to it. However, two second-generation
agents (called “tyrosine kinase inhibitors”), dasatinib
(Sprycel®) and nilotinib (Tasigna®), are now approved by the
U.S. Food and Drug Administration (FDA). These agents
can produce an excellent response in many cases. Trials are
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LEUKEMIA LYMPHOMA MYELOMA
under way to determine if one of these second-generation
drugs should become the drug of choice to initiate therapy
for some or all patients and if the combined use of two
drugs would be better than one.
Gleevec and other tyrosine kinase inhibitors are not only
important new agents in the treatment of CML, but they
also can also induce remissions in some cases of
Philadelphia-positive ALL, chronic eosinophilic leukemia,
chronic myelomonocytic leukemia and systemicmastocytosis because patients with these conditions have
a related genetic abnormality.
Lenalidomide (Revlimid®), a thalidomide derivative, has
been approved by the FDA for the treatment of a specific
subtype of myelodysplastic syndromes that results from a
deletion of part of chromosome 5. In patients with anemia,
principally, but without this specific chromosome 5
abnormality, about 20 percent of cases also derive benefit.
Patients with more severe forms of myelodysplastic
syndromes are unlikely to respond to this agent.
Azacitidine (Vidaza®), and decitabine (Dacogen®),
approved by the FDA for all types of myelodysplasticsyndromes, kill unhealthy marrow cells and may help the
marrow function more normally, reducing the need for
transfusions in some patients.
Clofarabine (Clolar®), approved by the FDA to treat
relapsed or refractory ALL in children who have received
at least two prior therapies, is being studied in clinical
trials to treat adult acute leukemia and myelodysplastic
syndromes. Other therapies in clinical research to treat
myelodysplastic syndromes include arsenic trixoxide,
valproic acid (Depakene®), a drug approved to treat
certain seizure disorders, and vorinostat (Zolinza®), an
agent this is approved to treat cutaneous lymphoma.
The remission rate and duration of remission of acute
promyelocytic leukemia (APL) has been improved
significantly with the introduction of all-trans retinoic acid
(ATRA) in combination with chemotherapy (anthracycline
antibiotic). Arsenic trioxide also adds to the drugs
available to treat this subtype of acute leukemia. Arsenic
trioxide (Trisenox®) is approved by the FDA to treat
patients who have relapsed or are resistant to treatment
with chemotherapy and ATRA. The combination of
arsenic trioxide and all-trans retinoic acid may be a further
advance in the initiation of therapy.
Successful treatment of hairy cell leukemia, a type of
chronic lymphocytic leukemia (CLL), has increased with
the use of cladribine, which induces long-term remissions
in nearly 90 percent of patients treated at diagnosis for
one week. Pentostatin is another effective drug that can be
used in patients with hairy cell leukemia who do not
respond to cladribine.
Several newer therapies have created more treatment
options for patients with myeloma. Thalidomide
(Thalomid®), in combination with dexamethasone, is
approved by the FDA for newly diagnosed myeloma.
Bortezomib (Velcade®) is approved by the FDA to treat
people with previously untreated myeloma and to treat
patients with myeloma and mantle-cell lymphoma who
have had at least one prior therapy. The 2007 FDA
approval of Velcade and doxil (a chemotherapeutic
agent) combination therapy offers another importantnew option for treating relapsed or refractory multiple
myeloma. Revlimid is approved by the FDA in
combination with dexamethasone for the treatment of
myeloma patients who have received at least one prior
therapy. The use of the newer drugs in various
combinations and with chemotherapy are being studied
in clinical trials.
Bendamustine (Treanda®), an intravenously administered
chemotherapy agent, was approved in March 2008 to
treat CLL and is showing promising results in clinical
trials to treat follicular NHL that does not respond to
rituximab (Rituxan®), either as a single agent or in
combination with chemotherapy.
Immunotherapy. This is a treatment that uses immune
cells or antibodies to fight disease. Immunotherapies
suppress disease progression and enhance the specificity
of treatment to minimize toxic effects on normal tissues.
Three types of immunotherapy are being explored:
antibody treatment, vaccine development, and immune
cell administration.
Monoclonal Antibody Therapy. Monoclonal antibodies
are laboratory-produced proteins that can be infused into
patients when indicated for the treatment of patients
with certain blood cancers. These agents target antigens
on the surface of cancer cells. The antigens are described
by a “cluster designation” (CD) followed by a number,
for example CD20.
Rituximab is an important antibody that targets the
CD20 antigen on B cells (B lymphocytes). Initially
Rituxan was used to treat indolent (slow-growing)
lymphomas, such as follicular lymphoma. It is also
approved to treat aggressive lymphomas (such as diffuse
large B-cell lymphoma) in combination with
chemotherapy. Rituximab is also used in combinationwith chemotherapy to treat some patients with CLL and
myeloma. Alemtuzumab (Campath®) is a monoclonal
antibody directed against the antigen CD52 found on T
and B lymphocytes. It is especially active against the
lymphocytes in CLL; in 2007, the FDA expanded
labeling and granted regular approval for single-agent
Campath for the treatment of CLL.
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LEUKEMIA LYMPHOMA MYELOMA
Another antibody that has been approved for use by the
FDA to treat certain patients with AML is linked to a
chemical toxin called calicheamicin. This drug,
gemtuzumab (Mylotarg®), is approved for older patients
with AML who relapse after initial treatment. This agent is
also being studied in clinical trials in combination with
other drugs to treat children with relapsed AML.
Monoclonal antibodies can also be linked to a radioactive
isotope to target and kill specific cancer cells. Theseantibodies are injected into the patient in the hope that the
antibodies will latch onto the antigen on the cancer cells
and destroy the cells. These are called conjugated
monoclonal antibodies. They deliver the toxic substance
directly to the cancer cells. Examples of this treatment are
the drugs ibritumomab (Zevalin®) and tositumomab and
iodine I131 tositumomab (Bexxar®). These drugs have been
approved to treat relapsed B-cell NHL.
Many potentially effective new monoclonal antibodies are
being studied in clinical trials for several types of blood
cancer.
Donor Lymphocyte Infusion. This type of therapy makes
use of donor lymphocytes that are given to a patient who
has already received a stem cell transplant from the same
donor. In patients with CML who have relapsed after stem
cell transplantation, the infusion of the original marrow
donor’s lymphocytes can re-induce remission. Patients with
myeloma also have had remission re-induced by donor
lymphocytes. This type of treatment is being studied
intensively to learn more about the basis for this immune
cell effect and to expand it for use in other types of blood
cancer.
Vaccines. Experimental vaccines are being studied to treatcertain types of lymphoma, myeloma and leukemia. The
goal is to extend the duration of remission achieved by
remission-induction therapy of various types. These types of
vaccines would be used in patients who have small
amounts of residual blood cancer after chemotherapy or
stem cell transplantation.
Many cancer treatment vaccines under development are
intended to induce antigen-specific antitumor immune
responses. This means that the vaccine induces an immune
response against the cancer cells present in the patient.
Some vaccines contain antigens or parts of antigens purified
from cancer cells obtained from the patient or from the
same type of cancer cells but obtained from another patient.
The results of vaccine studies for patients with follicular
lymphoma demonstrate that the vaccines can produce an
immune response in certain patients.
Multidrug Resistance. Cancer cells have mechanisms that
sometimes allow them to escape the damaging effects of
chemotherapy agents. These cells are, or become, less
responsive to chemotherapy. Approaches to addressing
multidrug resistance are under study. The goal of several
new agents being studied is to decrease resistance to an
important chemotherapy drug used in leukemia. These
agents are currently being tested in patients with AML and
myeloma in the hope that they may decrease drug
resistance and increase the rate of a prolonged response totherapy. Another approach is to use agents that kill cells
resistant to standard chemotherapeutic agents. This
approach is being studied in CLL patients with deletions of
part of chromosome 17, a mutation that increases
resistance to standard treatment.
Gene Therapy. One approach to this type of treatment is to
use “antisense” agents that block the encoding instructions
of an oncogene so that it cannot direct the formation of the
corresponding oncoprotein that causes the cell to transform
into a malignant cell. These agents can act on the gene
(DNA) or on RNA to prevent the formation of the gene
product or protein (oncoprotein) that is the direct cause of
transforming the cell into a malignant type.
In another approach, drugs are designed to interfere with
the oncoprotein and prevent its effect on the cell.
In studies of CML, gene therapy researchers are trying to
modify an oncogene (BCR-ABL) that produces a protein
that stimulates malignant cell growth. An alternative
strategy called molecular-targeted drug development targets
the oncoprotein. Two new and potentially important
approaches include a) the application of RNA interference;
b) a modality that uses molecules of RNA to silence
complementary (DNA) genes; and c) aptamer treatment, a
technique that prepares small molecules in the laboratory
that have the ability to inactivate proteins that cause
disease. If the gene in the former case is an oncogene or the
protein in the latter case is an oncoprotein, new forms of
cancer therapy may be developed.
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LEUKEMIA LYMPHOMA MYELOMA
Leukemia
Acute lymphocytic leukemia (ALL) Chronic lymphocytic leukemia (CLL)
Acute myelogenous leukemia (AML) Chronic myelogenous leukemia (CML)
Table 1
Type Individuals Male Female
Acute lymphocytic leukemia 5,430 3,220 2,210
Chronic lymphocytic leukemia 15,110 8,750 6,360
Acute myelogenous leukemia 13,290 7,200 6,090
Chronic myelogenous leukemia 4,830 2,800 2,030
Unclassified forms of leukemia 5,610 3,210 2,400
Total 44,270 25,180 19,090
Table 3: Source: Cancer Facts & Figures 2008, American Cancer Society, 2008.
Total Estimated Number of New Leukemia Casesin the United States for 2008
Estimated Proportion of New Cases (%) in 2008 forEach Type of Leukemia Including Adults and Children
Unclassified
13%
AML
30%
CML
11%
ALL
12%
Figure 3: Source: Cancer Facts & Figures 2008, American Cancer Society, 2008.
Approximate U.S. Prevalence of the Four MajorLeukemias, as of Jan. 1, 2005
Table 2: Sources: SEER November 2007 submission. *Complete prevalence(first malignant primary only) sums prevalence at 0 to <30 years post-initial
diagnosis and at >=30 years post-initial diagnosis. Estimates based on SEER 9for All Races, White, and Black, and SEER 13 for Asian/Pacific Islander andHispanic, excluding Alaska.
Type Prevalence*
Chronic lymphocytic leukemia 90,179
Chronic myelogenous leukemia 21,749
Acute lymphocytic leukemia 56,217
Acute myelogenous leukemia 28,817
The Four Major Types of Leukemia
Leukemia is a malignant disease (cancer) of the bone
marrow and blood. It is characterized by the uncontrolled
accumulation of blood cells. Leukemia is divided into four
categories: myelogenous or lymphocytic, each of which can
be acute or chronic. The terms myelogenous orlymphocytic denote the cell type involved. The four major
types of leukemia are shown in Table 1.
Living with Leukemia
An estimated 231,461 people in the United States are livingwith leukemia.
Acute leukemia is a rapidly progressing disease that results
in the accumulation of immature, functionless cells in the
marrow and blood. The marrow often no longer produces
enough normal platelets, red blood cells and white blood
cells. Anemia, a deficiency of red cells, develops in virtually
all leukemia patients. The lack of normal white cells impairs
the body’s ability to fight infections. A shortage of platelets
results in bruising and easy bleeding.
Chronic leukemia progresses more slowly and allows greater
numbers of more mature, functional cells to be made.
New CasesAn estimated 44,270 new cases of leukemia will be
diagnosed in the United States this year. Chronic leukemias
account for nearly 7 percent more of the cases than acute
leukemias.
• Most cases of leukemia occur in older adults; the median
patient age at diagnosis is 67 years. Leukemia is expected
to strike more than 10 times as many adults as children in
2008 (about 44,270 adults compared with 4,220 children,
aged 0-19).• The most common types of leukemia in adults are AML
and CLL.
• About 33 percent of cancers in children ages 0-14 years
are leukemia.
• Most cases of CML occur in adults. About 1 percent of
all cases of CML are in children ages 15-19 years. Only
about 2 percent of new cases of leukemias in children
ages 0-19 are CML.
• The most common form of leukemia in children is ALL.
Nearly 61 percent of the new cases of this disease will
occur among children in 2008 (about 3,293).
CLL
34%
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LEUKEMIA LYMPHOMA MYELOMA
Incidence by GenderIncidence rates* for all types of leukemia are higher among
males than among females. In 2008, males are expected to
account for nearly 57 percent of the new cases of leukemia.*Note: Incidence rates are the number of new cases in a given yearnot counting the preexisting cases. The incidence rates are usually presented as a specific number per 100,000 population.
Incidence by Race and Ethnicity
Leukemia rates are higher in Americans of European descentthan among those of any other race/ethnicity. However,
incidence rates for all types of cancer combined are more
than 5 percent higher among Americans of African descent
than among those of European descent. The incidence rate
for all cancers among African-Americans in the SEER 17
region, from 2001-2005, was 500.6 per 100,000 population,
averaging about 190,895 cases per year. The American
Cancer Society estimated there were approximately 152,900
new cases of cancer diagnosed in African-Americans in
2007.
From 1995 to 2004, incidence rates for leukemia have shown
the greatest decline in American Indian/Alaska natives.
Leukemia is one of the top 15 most frequently occurring
cancers in minority groups. Leukemia incidence is highest
among whites and lowest among Asian/Pacific Islanders.
Leukemia rates are substantially higher for Hispanic, white,
American Indian/Alaskan natives and Asian/Pacific islander
children than for black children.
Hispanic children of all races under the age of 20 have the
highest rates of leukemia.
Incidence by Age-GroupIncidence rates by age differ for each of the leukemias.
Children. The leukemias represented 27 percent of all
cancers occurring among children younger than 20 years of
age from 2001-2005. Leukemias are the most common
cancers in children less than 18 years old. In the 17 SEER
regions of the United States, there were 4,895 children
under the age of 20 diagnosed with leukemia from 2001-
2005, including 3,671 with ALL. It is estimated that in 2008,4,532 children less than 20 years old will be diagnosed with
leukemia throughout the United States. About 3,293 new
cases of childhood ALL are expected to occur in 2008.
The most common form of leukemia among children under
20 is ALL. ALL is the most common cancer in children 1 to
5 and 7 years old. The incidence of ALL among 1- to 4-
year-old children is nearly nine times greater than the rate
for young adults ages 20 to 24.
There is optimism within centers that specialize in the
treatment of children because survival statistics have
dramatically improved over the past 30 years. Most childrenunder 19 with ALL are cured.
Adolescents and Young Adults. From 1975 to 2005, the
incidence of AML slowly rose. Among 15- to 19-year olds,
ALL incidence was approximately twice that of AML. In
25- to 29-year olds, AML incidence was approximately one-
third higher than that of ALL.
I n c i d
e n c e
( p e r
1 0 0 , 0
0 0 )
Age in Years
<1 1-4 5-9 10-14 15-19 20-24 25-29 30-34 35-39 40-44 45-49 50-54 55-59 60-64 65-69 70-74 75-79 80-84 85+
Figure 4: Sources: SEER (Surveillance, Epidemiology and End Results) Cancer Statistics Review 1975-2005, National Cancer Institute, 2008.
Age-Specific Incidence Rates for Acute Myelogenous Leukemia (All Races), 2001-2005
25
23
21
19
17
15
13
11
9
7
5
3
10
0.70.4 0.9 0.9 0.9 1.2 1.3 1.72.3
3.14.6
6.8
10.3
14.8
18.7
23.1
21.1
0.91.5
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LYMPHOMA MYELOMALEUKEMIA
50%
40%
30%
20%
10%
0%
Years
Five-Year Relative Survival Rates for All Ages, All TypesLeukemia, 1975-2005*
Figure 5: *Includes follow-up into 2005. Source: SEER (Surveillance,Epidemiology and End Results) Cancer Statistics Review 1975-2005.National Cancer Institute, 2008. Cancer Facts & Figures 2008. Atlanta:American Cancer Society, 2008.
S u r v i v a l R a t e s
1975-77 1978-80 1981-83 1984-86 1987-89 1990-92 1993-95 1996-2004
39%38%35%
44%42%47% 49%
51%
Adults. CLL incidence increases dramatically among people
50 and older, and AML incidence increases dramatically in
people who are 55 and older. CML incidence also increases
dramatically among people who are 55 and older. These
cancers are most prevalent in the seventh, eighth and ninth
decades of life.
Signs and Symptoms of Leukemia
Signs of acute leukemia may include:• Easy bruising or bleeding (because of platelet deficiency)
• Paleness or easy fatigue (because of anemia)
• Recurrent minor infections or poor healing of minor
cuts (because of inadequate white cell count)
These signs are not specific to leukemia and may be
caused by other disorders. They do warrant medical
evaluation. The diagnosis of leukemia requires specific
blood tests, including the examination of the cells in blood
or marrow. Some people with chronic leukemia may not
have major symptoms and are diagnosed during a medical
examination.
Possible Causes of LeukemiaAnyone can get leukemia. Leukemia strikes all ages and
both sexes. The cause of leukemia is not known. Although
chronic exposure to benzene in the workplace and
exposure to extraordinary doses of irradiation can be
causes of the disease, neither explains most cases.
Treatment of LeukemiaThe aim of treatment is to bring about a complete
remission. Complete remission means that there is noevidence of disease and the patient returns to good health
with normal blood and marrow cells. Relapse indicates
return of the cancer cells and the return of disease signs
and symptoms. For acute leukemia, a complete remission
(no evidence of disease in the blood or marrow) that lasts
five years after treatment often indicates cure. Treatment
centers report increasing numbers of patients with
leukemia who are in complete remission at least five years
after diagnosis of their disease.
SurvivalRelative survival compares the survival rate of a person
diagnosed with a disease with that of a person without the
disease. The five-year relative survival rate nearly
quadrupled in the past 48 years for patients with leukemia.
In 1960-1963, when compared to a person without
leukemia, a patient had a 14-percent chance of living five
years. By 1975-1977, the five-year relative survival rate had
jumped to 35 percent, and in 1996-2004, the overall
relative survival rate was slightly above 50 percent (51.2
percent). The relative survival rates differ by age of the
patient at diagnosis, gender, race and type of leukemia.
Twenty-eight percent more males than females are living
with leukemia.
During 1996-2004, the five-year relative survival rates
overall were:
• ALL: 66.1 percent overall; 91.2 percent for children
under 5
• CLL: 76.2 percent
• AML: 21.3 percent overall; 55.2 percent for children
under 15
• CML: 46.7 percent
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LEUKEMIA LYMPHOMA MYELOMA
Figure 6: The graph shows childhood ALL five-year relative survival rateshave improved significantly over the past nearly 40 years.Sources: 1. Zuelzer WW. Implications of long-term survivals in acute stem cellleukemia of childhood treated with composite cyclic therapy. Blood.1964:24:477-494. 2. SEER (Surveillance, Epidemiology and End Results)
Cancer Statistics Review 1975-2005. National Cancer Institute, 2008.
90%
80%
70%
60%
50%
40%
30%
20%
10%
0%
Years
Five-Year Relative Survival Rates for Acute LymphocyticLeukemia, in Children Under 15, 1964-2004
78%83% 84%
88%
73%71%
66%
58%
3%
S u r v i v a l R
a t e s
19641 1975- 1978- 1981- 1984- 1987- 1990- 1993- 1996-19772 19802 19832 19862 19892 19922 19952 20042
Type Overall Male Female
Acute lymphocytic leukemia 1,460 800 660
Chronic lymphocytic leukemia 4,390 2,600 1,790
Acute myelogenous leukemia 8,820 5,100 3,720
Chronic myelogenous leukemia 450 200 250
Other, unclassified forms of leukemia 6,590 3,760 2,830
Total 21,710 12,460 9,250
Table 4: Source: Cancer Facts & Figures 2008, American Cancer Society, 2008.
Estimated Deaths (All Age Groups) from All Types of Leukemia in 2008
DeathsIt is anticipated that approximately 21,710 deaths in the
United States will be attributed to leukemia in 2008: 12,460
males and 9,250 females.
There will be an estimated 4,390 deaths from CLL and
1,460 deaths from ALL.
There will be an estimated 8,820 deaths from AML and 450
deaths from CML.
Unclassified forms of leukemia will account for 6,590
additional deaths.
The estimated numbers of deaths attributed to leukemia in
the United States are nearly 35 percent higher for males
than for females. In 2008, deaths from leukemia are
expected to be distributed as shown in Table 4.
In 2008, leukemia will be the sixth most common cause
of cancer deaths in men and the seventh most common
in women.
Between 2001-2005, African-Americans who were
diagnosed with leukemia between the ages of 25 and 64
had a higher death rate than whites from the disease.
Non-Hispanic whites have the highest death rates from
leukemia, while Asian/Pacific Islanders and American
Indians/Alaska Natives have the lowest death rates.
From 1995 to 2004, death rates from leukemia declined
in all race/ethnic groups, with the greatest average
decline in American Indians/Alaskan Natives.
The leukemia death rate for children from 0 to 14 years
in the United States has declined about 67 percent over
the past three decades. Despite this decline, leukemia
causes more deaths than any other cancer among
children and young adults under 20.In 2008, about 497 children under 15 are expected to die
from leukemia.
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LEUKEMIA LYMPHOMA MYELOMA
Lymphoma
Type Male Female Total
Hodgkin lymphoma 4,400 3,820 8,220
Non-Hodgkin lymphoma 35,450 30,670 66,120
Total 39,850 34,490 74,340
Table 5: Source: Cancer Facts & Figures 2008, American Cancer Society, 2008.
New Cases of Lymphoma by Gender, 2008
Lymphoma is a general term for a group of cancers that
originates in the lymphatic system. Lymphoma results when a
lymphocyte (a type of white blood cell) undergoes a
malignant change and begins to multiply, eventually crowding
out healthy cells and creating tumors that enlarge the lymphnodes or other sites in the body.
Hodgkin LymphomaHodgkin lymphoma is a specialized form of lymphoma and
will represent about 11.1 percent of all lymphomas diagnosed
in 2008. Hodgkin lymphoma has characteristics that
distinguish it from all other cancers of the lymphatic system,
including the presence of an abnormal cell called the Reed-
Sternberg cell (a large, malignant cell found in Hodgkin
lymphoma tissues).
Non-Hodgkin LymphomaNon-Hodgkin lymphoma (NHL) represents a diverse group
of cancers with the distinctions between types based on the
characteristics of the cancerous cells. The groups are often
classified as indolent or aggressive, or low, intermediate and
high grade. Each histologic grouping is diagnosed and treated
differently, and each has prognostic factors that categorize it
as more or less favorable. It is the ninth most common cause
of cancer deaths in males and the sixth in females.
Living with LymphomaIn the United States, as of Jan. 1, 2005, there were 143,814
people living with Hodgkin lymphoma (active disease or inremission) and 430,711 people living with NHL for a total of
574,525 members of the U.S. population who were living with
lymphoma on that date.
New CasesAbout 74,340 Americans will be diagnosed with lymphoma in
2008 (8,220 cases of Hodgkin lymphoma and 66,120 cases of
NHL). Table 5 illustrates the breakdown of estimated new
cases of lymphoma, in 2008, by gender. The incidence of
Hodgkin lymphoma is consistently lower than that of NHL.
NHL is the fifth most common cancer in males and
females in the United States. The age-adjusted incidence
of NHL rose by 79 percent from 1975 to 2005, an average
annual percentage increase of 2.6 percent.
Age-specific incidence rates of NHL are 2.9 per 100,000 at
ages 20 to 24 for males and 1.9 per 100,000 for females.
By ages 60 to 64, they are 53.9 per 100,000 for males and
39.2 per 100,000 for females. More than 4 percent of all
cases of Hodgkin lymphoma diagnosed in 2008 will be in
children under 15 years of age, while 1 percent of all cases
of NHL will be diagnosed in children under 15 this year.
The reasons for the development of NHL are not certain.
Immune suppression plays a role in some patients.
Persons infected with the human immunodeficiency virus
(HIV) have a much higher risk of developing lymphoma.
The Epstein-Barr virus causes Burkitt lymphoma in Africa.The bacterium Helicobacter pylori is associated with the
development of lymphoma in the stomach wall. These risk
factors explain only a small proportion of cases.
Incidence by GenderIncidence rates for Hodgkin lymphoma tend to be higher
among males than among females. Hodgkin lymphoma
and NHL are more common in males than in females.
Incidence by Race and EthnicityAlthough blacks, starting in their mid-to-late teens to mid-
50s, have higher incidence rates of NHL than whites,whites, beginning at age 60, generally have much higher
incidence rates than blacks.
Among women, Hispanics of all races have the second
highest incidence rates of NHL after whites. NHL is the
fifth most common cancer in Hispanics, comprising nearly
5 percent of all cancers diagnosed, and is the eighth most
common cause of cancer death in that group.
Incidence in ChildrenThe incidence of Hodgkin lymphoma among people
under 20 was 0.9 per 100,000 children in 2005. The
incidence in this group decreased significantly between
1975 and 1999. It has remained fairly constant since 1999,
decreasing again in 2005.
In the United States, about 10,730 children under the age
of 15 will be diagnosed with cancer in 2008. Lymphomas
(Hodgkin lymphoma, 3.7 percent; NHL, 4.2 percent) are
the third most common cancers in children, following
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LEUKEMIA LYMPHOMA MYELOMA
leukemia (32.6 percent) and neoplasms of the brain and
other nervous tissue (21.1 percent). Adolescents and older
teenagers are more commonly diagnosed with Hodgkin
lymphoma than young children.
In children under 20, lymphomas are most commonly
diagnosed in whites (24.7/1 million population), followed by
Hispanic children of all races (21.0/1 million population). Itis rarest among American Indian/Alaskan native children
(11.2/1 million population). From ages 5 to 19, the highest
incidence of NHL is in non-Hispanic whites.
From ages 1 to 9, more Hispanic children are diagnosed
with Hodgkin lymphoma than white children; from ages
10-19, more non-Hispanic white children are diagnosed
with Hodgkin lymphoma than children of other races or
ethnic groups.
Age-Specific Incidence Rates for Non-Hodgkin Lymphoma, 2001-2005
120
110
10090
80
70
60
50
40
30
20
10
0
<1* 1-4 5-9 10-14 15-19 20-24 25-29 30-34 35-39 40-44 45-49 50-54 55-59 60-64 65-69 70-74 75-79 80-84 85+
Figure 8: Sources: SEER (Surveillance, Epidemiology and End Results) Cancer Statistics Review 1975-2005, National Cancer Institute, 2008.*Based on <16 cases for time interval.
I n c i d e n c e
( p e r 1 0 0 , 0
0 0 )
Age in Years
0.60.00.9 1.3 1.8 2.4 3.5 4.7 7.3
10.315.3
22.6
31.8
46.2
62.9
81.4
100.4
116.1
106.0
I n c i
d e n c e
( p e r 1 0 0 , 0
0 0 )
6
5
4
3
2
1
0
Age in Years
<1* 1-4 5-9 10-14 15-19 20-24 25-29 30-34 35-39 40-44 45-49 50-54 55-59 60-64 65-69 70-74 75-79 80-84 85+
Figure 7: Sources: SEER (Surveillance, Epidemiology and End Results) Cancer Statistics Review 1975-2005, National Cancer Institute, 2008.* Based on <16 cases for time interval.
Age-Specific Incidence Rates for Hodgkin Lymphoma, 2001-2005
1.1
0.40.10.0
2.9
4.3 4.3
3.83.2 3.1
2.4 2.4 2.4
3.03.8
4.14.7
4.0
3.7
Incidence in AdultsThe incidence of NHL increases with age. About 2.4 cases
per 100,000 people occur in 20- to 24-year-old individuals.
The rate increases more than 19 times to 46.2 cases per
100,000 by ages 60 to 64, and more than 48-fold to 116.1
cases per 100,000 persons at ages 80 to 84.
Hodgkin lymphoma incidence rates are higher in adolescentand young adults than in adults in their middle years.
Signs and SymptomsSigns and symptoms of Hodgkin lymphoma include painles
swelling of lymph nodes in the neck, armpit or groin,
persistent fatigue, recurrent high fever, sweating at night,
troublesome itching and weight loss.
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Type Overall Male Female
Hodgkin lymphoma 1,350 700 650
Non-Hodgkin lymphoma 19,160 9,790 9,370
Total 20,510 10,490 10,020
Table 7: Source: Cancer Facts & Figures 2008, American Cancer Society,2008.
Estimated Deaths by Gender from Hodgkin Lymphomaand Non-Hodgkin Lymphoma
page 12
LEUKEMIA LYMPHOMA MYELOMA
Hodgkin Lymphoma 1975-77 1981-83 1990-92 1996-2004
All races 74% 76% 83% 86%
Whites 74% 76% 84% 87%
African-Americans 71% 73% 74% 80%
Non-Hodgkin Lymphoma 1975-77 1981-83 1990-92 1996-2004All races 48% 53% 52% 65%
Whites 48% 53% 53% 66%
African-Americans 49% 50% 42% 58%
Table 6: Source: SEER (Surveillance, Epidemiology and End Results)Cancer Statistics Review 1975-2005, National Cancer Institute, 2008.
Trends in Five-Year Relative Survival Rates by Race forHodgkin Lymphoma and Non-Hodgkin Lymphoma
The most common early sign of other forms of lymphoma
is also painless swelling of the lymph nodes – usually in
the neck, armpit, groin or in the abdomen. Symptoms
also often include fever, night sweats, excessive tiredness,
indigestion and abdominal pain, loss of appetite and
bone pain.
Treatment
Hodgkin lymphoma is often treated with radiation andchemotherapy.
Early stage, localized NHL is sometimes treated with
radiation; widespread disease requires chemotherapy or
chemotherapy and/or monoclonal antibody therapy with
radiation, depending on the tumor size, cell type and
location of the lymphoma. Treatment for NHL sometimes
includes vaccines and other forms of immunotherapy.
Survival for AdultsHodgkin lymphoma is now considered to be one of the
most curable forms of cancer. Chemotherapy, radiation or
both may result in cures for most patients with Hodgkin
lymphoma.
The five-year relative survival rate for patients with
Hodgkin lymphoma has more than doubled from 40
percent in whites in 1960-1963, to more than 86 percent
for all races in 1996-2004. Five-year relative survival rates
are 91.6 percent for all patients who were less than 45
years old at diagnosis.
The five-year relative survival rate for NHL patients has
risen from 31 percent in whites in 1960-1963 to 64.9
percent for all races in 1996-2004.
Survival for ChildrenFive-year relative survival is 95.3 percent for Hodgkin
lymphoma in people under 20. Five-year relative survival is
now 95.9 percent for Hodgkin lymphoma in children ages
0 to 14. In children from 0 to 19 years, five-year relative
survival for NHL is now 83.3 percent. This represents a
significant improvement in the rate of recovery. Even in the
mid-1970s, most children with NHL did not live five years
after diagnosis.
DeathsAn estimated 20,510 persons will die from lymphoma in
the United States in 2008 (19,160 from NHL; 1,350 from
Hodgkin lymphoma). NHL is the ninth most commoncause of cancer death in males and the sixth in females in
the United States. Death rates have been declining for
Hodgkin lymphoma patients since the mid-1970s.
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LEUKEMIA LYMPHOMA MYELOMA
Myeloma
Age-Specific Incidence Rates for Myeloma, 2000-2005
I n c i d e n c e
( p e r 1 0 0 , 0
0 0 ) 40
30
20
10
0
Age in Years0-24 25-29 30-34 35-39 40-44 45-49 50-54 55-59 60-64 65-69 70-74 75-79 80-84 85+
Figure 9: Source: SEER (Surveillance, Epidemiology and End Results) CancerStatistics Review 1975-2005, National Cancer Institute, 2008. *<16 cases for eachage and time interval, SEER 17 areas (<1, 1-4, 5-9, 10-14, 15-19, 20-24).
0.30.1
14.8
0.7 1.5 3.26.0
9.6
21.1
28.3 34.7
38.1
33.4
Myeloma is a cancer of the plasma cells, a type of white blood
cell found in many tissues of the body, but primarily in the
bone marrow. In myeloma, a B lymphocyte, the cell that forms
plasma cells, becomes malignant. It grows continuously and
forms masses of plasma cells, especially in the marrow,destroying normal bone tissue, causing pain and crowding out
normal blood cell production.
Malignant plasma cells produce an abnormal protein called
monoclonal immunoglobulin. Immunoglobulins (or
antibodies) are an important part of the body’s natural defense
against infection because they recognize microbes that invade
the body and permit them to be removed and destroyed. The
onset of myeloma interferes with normal production of
antibodies and makes myeloma patients susceptible to
infections.
Living with MyelomaAn estimated 63,084 people in the United States are living
with myeloma. More than 60 percent of those were diagnosed
with the disease within the past four years.
New CasesAn estimated 19,920 (11,190 men and 8,730 women) new
cases of myeloma will be diagnosed in the United States in
2008.
• The median age at diagnosis is 70, and it rarely occurs in
people under age 45.
• The median age at diagnosis for African-Americans is 67.• The 2005 incidence rate in men (7/100,000) was 56 percent
higher than that for women (4.5/100,000).
• Americans of African descent have more than double the
incidence rate (11.6/100,000), of myeloma than those of
European descent (5.6/100,000). Black men age 40 and
above have the highest rates of incidence of myeloma. The
highest rates are found in black men 80 to 84 years of age
and older (103.2/100,000). From 2000 to 2005, myeloma
was the 10th most commonly diagnosed cancer among
African-American men and women.
Signs and SymptomsOften the first symptom of myeloma is bone pain caused by
the effects of myeloma cells in the marrow. Patients may have
anemia, tire more easily and feel weak. Fractures may occur as
a result of the weakened bones. Recurrent infections may be
an early sign of the disease.
Possible CausesThe cause of myeloma is not known.
TreatmentChemotherapy for myeloma has led to sustained remissions in
some patients. At times, two or three drugs are used
simultaneously. Thalidomide combined with dexamethasone is
approved by the FDA for use in treating newly diagnosedmyeloma. Treatment may include intensive chemotherapy
followed by stem cell transplantation to restore normal blood
cell production. Usually, the patient’s own stem cells are used
(autologous stem cell infusion). Treatment is aimed at slowing
progress of the disease. Bortezomib has been approved for
treating previously untreated myeloma and in patients who
have had at least one prior therapy. In 2007, the FDA approve
bortezomib combined with the chemotherapy drug doxil to
treat relapsed or refractory myeloma. Lenalidomide is approve
by the FDA in combination with dexamethasone for the
treatment of myeloma patients who have received at least one
prior therapy.
SurvivalCurrent statistical databases show that overall, five-year relativ
survival in patients with myeloma has shown a significant
improvement since the 1960s: 12 percent in 1960-1963 for
whites to 35 percent from 1996-2004 for all races. Total
survival for whites, especially, has been increasing, but it is the
most difficult blood cancer to treat successfully.
DeathsApproximately 10,690 deaths from myeloma are anticipated
this year. Myeloma was the 12th most common cause of cancer deaths for women in 2001-2005. Approximately 3
percent of all cancer-related deaths among African-American
in 2001-2005 were from myeloma. The mortality rate from
myeloma for people of African descent is more than double
the rate for whites (6.9/100,000 to 3.4/100,000). The U.S.
median age at death from multiple myeloma is 74. It is 71 for
African-Americans.
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LEUKEMIA LYMPHOMA MYELOMA
Myelodysplastic SyndromesMyelodysplastic syndromes (MDS) are a group of diseases of
the blood and marrow, with varying degrees of severity,
treatment needs and life expectancy. MDS starts with a change
to a normal stem cell in the marrow. With MDS, the marrow
becomes filled with an increased number of developing bloodcells. The blood is usually deficient in cells because the
developing cells in the marrow die before they can be released
into the blood. Normally, immature cells known as “blasts”
make up less than 5 percent of all cells in the marrow. In MDS
patients, blasts often constitute more than 5 percent of the cells.
A patient with more than 20 percent blasts in the marrow is
diagnosed with acute myelogenous (or myeloid) leukemia
(AML). MDS has been known as “smoldering leukemia,” or
“preleukemia.” These terms may be misleading because they
imply that MDS is only serious and problematic after it has
evolved into AML, which is not the case. The most common of
the subtypes is “MDS, not otherwise specified (NOS),”comprising 51 percent of all MDS cases.
It is estimated that there will be more than 11,000 new cases of
MDS diagnosed in the United States in 2008. The overall
incidence rate is estimated at close to four cases per 100,000
population. According to SEER’s 2001-2005 data, MDS most
commonly strikes males ages 70 and above.
Incidence by Gender
For the five-year period 2001-2005, there were approximately
50,484 cases of MDS throughout the United States, averaging
10,097 cases per year (a total of 27,629 in males, averaging
5,526 per year; and a total of 22,856 in females, averaging 4,571per year). This results in an incidence rate of 3.8 cases per
100,000 population for both genders – 5.1/100,000 population
in males, and a much lower 2.9/100,000 population in females.
Incidence by Race and Ethnicity
White males have the highest incidence rates (5.2/100,000
population), while American Indian/Alaskan Native females
and males and Asian/Pacific Islander females have the lowest
incidence rates (2.2, 2.3 and 2.5/100,000 population,
respectively).
Signs and Symptoms
Most often persons diagnosed with MDS first seek medical
attention because of symptoms including fatigue and shortness
of breath during physical activity (from anemia). Some patients
have no symptoms and a diagnosis of MDS is made as a result
of a routine physical examination and blood work.
Possible Causes of MDS
MDS may be “primary” or “secondary” (arises following
treatment with chemotherapy and radiotherapy for certain
other cancers). Only a small proportion of people exposed to
chemotherapy or radiation therapy develop MDS. Anotherpossible cause is repeated exposure to the chemical benzene.
Benzene is found in certain industrial settings, but regulation
has reduced workplace exposure. Cigarette smoke is now the
most common known cause of benzene exposure. The vast
majority of patients with MDS have primary MDS, which
usually has no clear-cut triggering event.
Treatment of MDS
The goals of therapy for MDS vary based on patient risk
factors. The goal for patients with lower risk is to manage the
disease by reducing transfusion needs and infection risk, and
also increasing the number years of good quality of life. Today,
the only potentially curative therapy, high-dose chemotherapy
with allogeneic stem cell transplantation, is a practical option
for certain younger patients with higher-risk MDS whose life
expectancy without successful treatment warrants the risk
associated with transplantation. Other general approaches to
treatment (used alone or in combination) include: transfusion;
observation with periodic blood counts; administration of
erythropoietin and other growth factors; drug therapy with
newer agents such as azacitidine, decitabine, and lenalidomide
or chemotherapy of the type used to treat AML.
Survival
On Jan. 1, 2005, there were 25,473 people in the United States
living with MDS. Because the National Cancer Institute,
SEER program, only recently began maintaining statistics for
MDS, this is a four-year prevalence figure, as opposed to the
30-year prevalence figures reported for other types of cancer.
Deaths
Data for the number and rates of deaths from MDS are not
yet available.
Table 8 : Source: SEER (Surveillance, Epidemiology and End Results) CancerStatistics Review, 1975-2005, Table XXX-2, National Cancer Institute, 2008
Myelodysplastic Syndromes Incidence Rates, by Age,Age-Adjusted for 17 SEER Geographic Areas, 2001-2005
By Age, in Years Rate per 100,000 population
(Both genders)<40 0.2
40 – 49 0.8
50 – 59 2.2
60 – 69 8.1
70 – 79 23.2
80+ 41.4
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LEUKEMIA LYMPHOMA MYELOMA
Incidence Rates: Leukemia,Lymphoma and Myeloma
The following tables showing incidence rates for leukemia,
Hodgkin lymphoma and non-Hodgkin lymphoma and
myeloma use figures from 2001-2005, the most recent
available. Rates are per 100,000 population and are age-
adjusted to the 2000 population.
Type Overall Male Female
Leukemia 12.3 16.0 9.5
Non-Hodgkin lymphoma 19.5 23.5 16.3
Hodgkin lymphoma 2.8 3.1 2.5
Myeloma 5.6 7.0 4.6
Table 9: Source: SEER (Surveillance, Epidemiology and End Results) CancerStatistics Review 1975-2005, National Cancer Institute, 2008. (Based on SEER 17 areas.)
Incidence Rates by Gender, All Races, per 100,000Population (2001-2005)
Type Overall Male Female
Leukemia 12.9 16.7 9.9
Non-Hodgkin lymphoma 20.3 24.3 17.1
Hodgkin lymphoma 3.0 3.3 2.7
Myeloma 5.2 6.6 4.1
Table 11: Source: SEER (Surveillance, Epidemiology and End Results) CancerStatistics Review 1975-2005, National Cancer Institute, 2008. (Based on SEER 17 areas.)
Incidence Rates by Gender, for Whites, per 100,000Population (2001-2005)
Type Overall Male Female
Leukemia 10.1 13.0 8.0
Non-Hodgkin lymphoma 14.9 18.4 12.1
Hodgkin lymphoma 2.5 2.9 2.3
Myeloma 11.6 14.4 9.8
Table 10: Source: SEER (Surveillance, Epidemiology and End Results) CancerStatistics Review 1975-2005, National Cancer Institute, 2008. (Based on SEER 17 areas.)
Incidence Rates by Gender, for Blacks, per 100,000Population (2001-2005)
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LEUKEMIA LYMPHOMA MYELOMA
Estimated New Cases of Blood Cancers by Site,by State, 2008
Estimated Deaths from Blood Cancers by Site,by State, 2008
Non-Hodgkin HodgkinState Leukemia Lymphoma Myeloma Lymphoma§
Non-Hodgkin HodgkinState Leukemia Lymphoma Myeloma Lymphoma
Alabama 360 320 220
Alaska * * *
Arizona 400 340 200
Arkansas 240 190 110
California 2,170 1,910 1,070
Colorado 290 200 140
Connecticut 270 230 150Delaware 70 60 *
Dist. of Columbia * * *
Florida 1,640 1,410 680
Georgia 540 480 310
Hawaii 80 80 *
Idaho 120 100 50
Illinois 980 800 440
Indiana 510 450 240
Iowa 310 290 130
Kansas 220 200 120
Kentucky 320 300 170
Louisiana 310 300 160
Maine 110 100 60
Maryland 390 350 220Massachusetts 480 450 240
Michigan 790 740 410
Minnesota 390 320 190
Mississippi 220 180 110
Missouri 470 460 240
Montana 80 80 50
Nebraska 150 130 60
Nevada 160 110 80
New Hampshire 100 90 50
New Jersey 640 550 260
New Mexico 120 110 70
New York 1,370 1,110 630
North Carolina 600 500 360
North Dakota * * *
Ohio 900 660 470
Oklahoma 290 200 110
Oregon 270 380 160
Pennsylvania 1,060 1,160 530
Rhode Island 90 50 *
South Carolina 320 270 130
South Dakota 70 70 *
Tennessee 470 430 260
Texas 1,420 1,320 710
Utah 130 130 70
Vermont 50 * *
Virginia 500 420 260
Washington 460 400 210
West Virginia 150 170 70
Wisconsin 500 390 200
Wyoming * * *
Total 21,710 19,160 10,400
Table 13. Sources: Cancer Facts & Figures 2008. American CancerSociety, 2008. Additional data supplied by the American CancerSociety based on data from the U.S. Mortality Public Use Data Tapes,1969-2005, National Center for Health Statistics, Centers for DiseaseControl and Prevention, 2007. Used with permission.* <50 deaths§ Deaths could not be calculated due to small numbers.
Alabama 630 970 320 80
Alaska 70 120 * *
Arizona 760 1,180 310 140
Arkansas 520 650 200 *
California 4,530 7,560 2,020 880
Colorado 720 920 240 130
Connecticut 570 910 260 120Delaware 110 190 60 *
Dist. of Columbia 50 100 50 *
Florida 3,190 4,750 1,520 520
Georgia 1,030 1,550 550 230
Hawaii 170 250 70 *
Idaho 240 340 80 *
Illinois 1,890 2,870 860 400
Indiana 910 1,340 390 190
Iowa 630 730 240 110
Kansas 410 600 190 60
Kentucky 700 970 290 140
Louisiana 690 1,020 340 120
Maine 260 340 100 *
Maryland 640 1,080 390 110Massachusetts 1,000 1,580 430 240
Michigan 1,630 2,360 700 330
Minnesota 910 1,110 320 *
Mississippi 380 540 200 50
Missouri 870 1,330 420 140
Montana 160 230 80 *
Nebraska 290 390 120 50
Nevada 370 480 140 60
New Hampshire 200 320 90 *
New Jersey 1,440 2,210 640 330
New Mexico 320 350 120 50
New York 3,140 4,460 1,520 610
North Carolina 1,110 1,610 590 200
North Dakota 100 140 50 *Ohio 1,660 2,790 770 330
Oklahoma 570 840 230 80
Oregon 490 930 240 140
Pennsylvania 2,220 3,300 960 480
Rhode Island 170 250 70 50
South Carolina 590 780 320 100
South Dakota 130 170 60 *
Tennessee 880 1,320 400 90
Texas 3,330 4,650 1,380 670
Utah 320 420 110 60
Vermont 100 160 * *
Virginia 850 1,410 460 160
Washington 970 1,590 410 180
West Virginia 290 410 140 50
Wisconsin 980 1,390 360 170
Wyoming 80 110 * *
Total 44,270 66,120 19,810 7,850
Table 12. Sources: Cancer Facts & Figures 2008, American CancerSociety, 2008, and American Cancer Society, Inc., Surveillance Research.Used with permission. Note: These estimates are offered as a rough guideand should be interpreted with caution. They cannot be compared withestimates prior to 2007 to determine cancer incidence trends. The methodof derivation, which was new for 2007, is described by Pickle et al., CA ACancer Journal for Clinicians, January/February 2007. State estimatesmay not add to US total due to rounding. and exclusion of state estimatesfewer than 50 cases. Numbers are rounded to the nearest 10. * <50 cases
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LEUKEMIA LYMPHOMA MYELOMA
Notes and DefinitionsNotes
The United States does not have a nationwide reporting system
or registry for blood cancers, so the exact number of cases is not
known. The data presented in this report are an extrapolation or
estimate of the number of cases reported by the 17 Surveillance,Epidemiology and End Results Program (SEER) regions (or, in
some cases fewer than 17 SEER regions) and death data from
the National Center for Health Statistics. These numbers are
extrapolated to the entire 17 SEER regions by dividing the
number of cancer cases or deaths in a specific region by the U.S.
Bureau of the Census’ 2000 population data for that region.
Mortality data reflected in the 2008 SEER report used as a
reference reflect data updates from the National Center for
Health Statistics, Centers for Disease Control and Prevention,
from 1969 to 2005, as made available in 2008. The American
Cancer Society projects this year’s estimated cancer cases based
on incidence rates for 1995 to 2004 from 41 states and theDistrict of Columbia (approximately 85 percent of the estimated
U.S. population), as reported by the North American
Association of Central Cancer Registries.
The SEER (17 region) data cover only about 26 percent of the
U.S. population. The data can be extrapolated for the entire
United States by multiplying by the population ratio, but these
figures do not take into account differences in geography, race
and ethnicity in various regions and region-specific health risks.
Because of changes in the information — such as racial
classification — gathered in the 2000 U.S. Census, estimates of
cancer incidence, survival and mortality have been revised,
mostly upward, in comparison to the 2002 SEER report.
Beginning in 2007, the American Cancer Society changed its
method of estimating cancer incidence. This change means from
2007 on, incidence estimates are not comparable with previous
estimates for determining cancer incidence trends. The
description of the methods used was published in Pickle et al.,
CA; A Cancer Journal for Clinicians, January/February 2007.
The American Cancer Society explains this change on its
website: http://www.cancer.org/docroot/STT/stt_0.asp. Because
of this change in method, state-by-state data for incidence of
Hodgkin lymphoma have not been available since 2007 becausethese numbers are so small.
Data on American Indians/Alaska natives (AI/AN) should be
interpreted with care because the data reflect information
from Indian Health Service (IHS) Contract Health Service
Delivery Area (CHSDA) counties. Many AI/ANs do not
reside in such counties and other AI/AN individuals are not
members of federally recognized tribes and cannot avail
themselves of IHS services.
Myelodysplastic syndromes were included in NCI SEER
statistics as separate entities beginning in 2007 and newly
included in this year’s Facts.
DefinitionsIncidence is the number of newly diagnosed cases for a
specific cancer or for all cancers combined during a specific
time period. When expressed as a rate, it is the number of
new cases per standard unit of population during the time
period. Incidence rates can be calculated based on a number
of factors, such as age, race or sex.
Age-adjusted rate is an incidence or mortality rate that has
been adjusted to reduce the effects of differences in the age
distributions of the populations being compared.
Relative survival rate is an estimate of the percentage of
patients who would be expected to survive the effects of the
cancer. This rate is calculated by adjusting the observed
survival rate so that the effects of causes of death other than
those related to the cancer in question are removed. The
relative survival rate is a comparison of survival to a person
who is free of the disease. (Observed survival is the actual
percentage of patients still alive at some specified time after
diagnosis of cancer. It considers deaths from all causes,
cancer or otherwise.)
Prevalence is the estimated number of people alive on a
certain date in a population who previously had a diagnosis
of the disease. It includes new (incidence) and preexistingcases and is a function of both past incidence and survival.
Prevalence may be calculated in a number of different ways,
especially in looking at populations in which individuals have
had more than one type of cancer. In some prevalence
statistics, only the first diagnosed cancer counts. Thus, if a
person is initially diagnosed with melanoma and later
develops leukemia, his or her survival with leukemia may not
be counted in leukemia prevalence statistics. Thus, prevalence
numbers reported may vary depending upon the method used
to determine them.
In this report, complete prevalence is reported as defined by
SEER as “an estimate of the number of persons (or the
proportion of population) alive on a specified date who had
been diagnosed with the given cancer, no matter how long
ago that diagnosis was.” We are using the “30-year limited
duration” prevalence figures, based on the “first invasive
tumor for each cancer site diagnosed during the previous 30
years (1975-2004),” as per SEER table I-21. The specified date
is 1/1/2005 for the prevalence estimates.
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LEUKEMIA LYMPHOMA MYELOMA
About LLSThe Leukemia & Lymphoma Society (LLS) is the world’s largest
voluntary health organization dedicated to funding blood cancer
research and providing education and patient services. We offer a
wide variety of programs and services in support of our mission:
Cure leukemia, lymphoma, Hodgkin’s disease and myeloma, andimprove the quality of life of patients and their families.
LLS is a nonprofit organization that relies on the generosity of
individual and corporate contributions to advance its mission.
Research
Research Grant Programs
LLS’s research programs are based on the belief that all
scientifically sound approaches toward a cure for, or control of,
leukemia, lymphoma and myeloma should be encouraged
worldwide. Since the first funding in 1954, LLS has awarded
more than $600 million in research grants.
LLS administers two integrated research funding programs - the
Research Grant Program and the Therapy Acceleration
Program - to support its mission. With advisory input from
world-renowned biomedical research experts, these programs
support the entire research continuum relevant to improved
outcomes for blood cancer patients, from basic laboratory
science to clinical trials of new agents, and from investigator-
initiated research to multi-disciplinary academic collaborations
and private-sector drug development alliances, all aimed at
effective discovery and development of new therapies for all
blood cancer patients who need them.
The Research Grant Program provides grant funding to supportscientific studies at academic centers in the United States and 13
other countries, through three grant mechanisms:
1. The Career Development Program (CDP) provides
stipends to investigators of exceptional promise in the early
stages of their careers, helping them to devote their careers
to leukemia, lymphoma and/or myeloma research. This
program is stratified into two separately reviewed programs
in basic or clinical research:
Basic Research
• Scholars are awarded $110,000 a year for a total of
$550,000 over five years.• Special Fellows are awarded $65,000 a year for a total of
$195,000 over three years.
• Fellows are awarded $55,000 a year for a total of
$165,000 over three years.
Clinical Research
• Scholars in Clinical Research are awarded $110,000 a
year for a total of $550,000 over five years.
• Special Fellows in Clinical Research are awarded
$65,000 a year for a total of $195,000 over three years.
2. The Translational Research Program (TRP) supports
outstanding investigations deemed by our expert advisor
most likely to translate basic biomedical discoveries intonew, safe and effective treatments, ultimately prolonging
and enhancing patients’ lives. Translational Research
Awards are made for an initial three-year period. Awards
up to $200,000 per year for three years, for a total of
$600,000, are granted each year. Funding for two
additional years may be provided for highly promising
projects that are entering Phase I clinical trials. Thus,
research reaching a clinical trial can receive $1 million
over five years to facilitate new drug discovery or
advances in diagnosis or prevention.
3. The Marshall A. Lichtman Specialized Center of
Research Program (SCOR) encourages multidisciplinary
research by teams of leading-edge academic investigators
that hastens the discovery and development of better
treatments for leukemia, lymphoma and myeloma
patients. These center grants are awarded to a cluster of
at least three research groups that interact to foster
advances in the diagnosis, treatment or prevention of
leukemia, lymphoma or myeloma. The SCOR grants also
support scientific core laboratories to provide access to
innovative technology if required by the participating
research programs. The program is expected to generate
new knowledge and breakthrough discoveries, leading to
better survival rates and prevention measures for patientsEach SCOR is funded up to $1.25 million per year over a
five-year period, to a total cost of $6.25 million. The
SCOR program brings together research teams working
in complementary areas, each focused on the discovery o
new approaches to benefit patients or those at risk for
developing leukemia, lymphoma and myeloma. Awards
go to those groups that best demonstrate the synergy that
will occur from their close interaction. The participating
scientists may be at different institutions or from any
country.
The Grant Review ProcessScientists and physician-scientists who are experts in the field
of leukemia, lymphoma and myeloma research comprise four
review subcommittees. They are:
1. CDP-basic research
2. CDP-clinical research
3. TRP
4. SCOR
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LEUKEMIA LYMPHOMA MYELOMA
These committees evaluate all grant applications in those
programs and determine those applicants with the most
innovative and important projects to advance LLS’s mission.
Guidelines, instructions, and applications for LLS’s three
research programs may be obtained by visiting www.LLS.org
or by or emailing [email protected].
The Therapy Acceleration Program (TAP) is a strategic LLS
initiative launched in 2007 with $4 million in seed funding.
The program promises to accelerate new and better treatmentsand clinical tests into preclinical development and clinical
trials. Working in concert with academic investigators, medical
centers and companies, TAP is further bridging the gap
between discovery and human applications to increase the
likelihood that novel, possibly breakthrough, treatments will be
made available to patients as soon as possible.
TAP encompasses three innovative efforts:
1. The Academic Concierge Division identifies current
LLS-funded research with the greatest clinical promise
and provides the funding and support needed to
advance selected projects to the product stage.
2. The Clinical Trial Division partners LLS with certain
of the country’s leading clinical trial centers to
accelerate the testing of new blood cancer therapies in
clinical trials.
3. The Biotechnology Accelerator Division allies LLS
with companies to combine scientific and financial
resources and accelerate the development of potential
therapies that otherwise would not be prioritized by
the company.
Professional Education
LLS serves the continuing educational needs of the medical
and research community through professional symposia
offered throughout the year. The educational program offers
varying formats to facilitate the exchange of information and
ideas on the newest developments in cancer research and
treatment. The Annual Research Symposium, sponsored by
LLS, is held each December on the Friday immediately before
the American Society of Hematology meeting. LLS funds
several Focused Workshops each year on important topics
relevant to hematological malignancies.
Other meetings are held for LLS’s grantees. These include the
Stohlman Scholar Symposium, the Translational ResearchGrant Progress Review Meeting and the SCOR Progress
Review Meeting.
In addition to the highly focused scientific meetings we also
sponsor educational meetings for primary care physicians and
other professionals at meetings such as the American
Academy of Family Practitioners and American College of
Physicians. LLS is an accredited provider of continuing
education credit for nurses and social workers.
Patient Services
LLS has a network of 68 chapters throughout the United
States and Canada. These offices conduct life-enhancing
patient services, including support groups, peer counseling
and patient financial aid. LLS also hosts numerous
teleconferences and Webcasts, where medical professionals
share the latest research findings.
Information Resource Center (IRC)LLS strives to be the world’s foremost source of information
on leukemia, lymphoma, myeloma, myelodysplastic
syndromes and other blood cancers. The IRC is a
worldwide link to information and resources useful to
patients, their families and healthcare professionals.
Information specialists are oncology social workers and
health educators who provide callers with current
information on blood cancers, treatments, clinical trials
and offer guidance on coping. They are available to talk
one-on-one, Monday through Friday, 9 a.m. to 6 p.m. ET.
Patients, families and professionals may call the IRC toll
free at (800) 955-4572 in addition to corresponding by
email at [email protected]. You may also chat online
with an information specialist, from 10 a.m. to 5 p.m. ET,
at www.LLS.org (click “Live Help”).
Co-Pay Assistance Program
Patients who have difficulty paying for, or simplycannot afford, their health insurance premiums orprescription drug co-pays now can apply for assistancefrom LLS. Patients needing assistance may apply atwww.LLS.org/copay, call (877) LLS-COPAY([877] 557-2672) or email [email protected].
LLS’s Web SiteLLS’s Web site, www.LLS.org, serves a wide variety of
education and information needs. It is continually being
updated and expanded to support and promote LLS’s
mission. The user has the opportunity to create
personalized pages with identified interests. The site
features a comprehensive overview of blood cancers, LLS’s
programs and services, Family Support Group locations,
information about our peer-to-peer program First
Connection and other programs.
Teleconferences and Webcasts
LLS sponsors more than 25 educational teleconferencesand Webcasts each year on topics of interest to patients
and caregivers. Information on registration for these free
events can be accessed at www.LLS.org; audio, podcasts
and Webcast archives of these programs are available at
www.LLS.org.
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LEUKEMIA LYMPHOMA MYELOMA
Educational Materials
An extensive collection of free educational materials are
offered to patients and health professionals. Each year, LLS
distributes more than 1 million booklets, brochures and videos
through the IRC and local chapters. Much of the content of
these materials is available to view and download at
www.LLS.org.
Chapter Programs:
Family Support Groups: LLS has developed more than 360
Family Support Groups at 68 chapters. Guided by two
volunteer oncology health professionals, each group provides
information and support, and encourages greater
communication among patients, families, friends and
healthcare professionals.
First Connection: This program links newly diagnosed
patients to a peer volunteer who has experienced a similar
diagnosis. A trained patient volunteer currently in remission
phones the new patient to share information and support.
Patient Financial Aid Program: For more than 32 years, LLS
has helped patients demonstrating a need for financialassistance cover a portion of their treatment costs. Through
the Patient Financial Aid Program, reimbursement of up to
$500 per year helps cover the costs of transportation, drugs
and various treatments not covered by insurance. Patient
financial aid funds are subject to availability.
Milestones in Myeloma Therapy: This program presents an
overview of myeloma, treatments, emerging therapies and
managing side effects and how to find emotional support
when living with the illness. This LLS program is being
supported by Celgene Corporation and Millennium
Pharmaceuticals.
Getting the Best Cancer Care at 55 and Older: This
education program presents an overview of the many factors
(not age alone) that healthcare professionals should assess
to determine an appropriate cancer treatment plan for an
older adult.
The Road to New Discovery: Emerging Therapies in Blood
Cancers: This program provides patients, families and
healthcare professionals with a clear description of what
clinical trials are, how cancer drugs are developed and what
the emerging treatment options are for leukemia, lymphoma
and myeloma. This program is provided through an
unrestricted educational grant from MillenniumPharmaceuticals.
The Trish Greene Back to School Program for Children
with Cancer: This program is designed to increase
communication among healthcare professionals, parents,
patients and school personnel to assure youngsters a smooth
transition from active treatment back to school. Printed
literature, videos and other materials to aid the process are
available through all local chapters.
Welcome Back: Facilitating the Return to School for
Children with Cancer: A part of the The Trish Greene Back
to School Program, this education program discusses possible
emotional and cognitive short- and long-term effects that
children may experience after treatment, and offers numerous
resources that can assist childhood cancer survivors to
flourish in the school environment post-treatment.
Advocacy
Since 1994, LLS’s advocacy program has been a strong voice
in Washington, DC, representing the healthcare quality
concerns and medical research interests of patients and their
families to policy makers at all levels of government. LLS
volunteers and staff visit Capitol Hill regularly to lobby
Congress in support of issues that impact research and patient
care. Working through chapters across the country, local
volunteers and staff are building a grassroots advocates’
network to rally patients and their families to promote
common goals related to cancer research and treatment. That
network now numbers more than 35,000 and has become a
potent voice in public policy deliberations.
LLS has identified key issues that currently shape its
advocacy agenda, including
• Insurance coverage of patient-care costs in clinical trials
• Ready access by all Americans to quality cancer care
• Increased funding for the National Institutes of Health and
National Cancer Institute (NCI)
• Increased funding for blood cancer research at other
federal institutions
• Federal funding for patient education and support
programs
In 2001, LLS successfully lobbied Congress to institute a
blood cancer research initiative as part of the U.S.
Department of Defense’s medical research program. To date,
that program has funded some $30 million in additional
blood cancer research.
In 2002, LLS successfully lobbied Congress for legislation
that authorizes a new blood cancer research effort at the NCI
and creates a new blood cancer education program for
patients and the public under the Centers for Disease Control
and Prevention. The patient education program was funded
at $23 million through 2008, providing additional support for
blood cancer patients and their families nationwide.
In 2007, LLS expanded its advocacy program beyondWashington to include the representation of patient interests
in state capitals. Guided by the 2008-2011 LLS Strategic Plan,
LLS state advocacy efforts have focused on ensuring coverage
of routine care for patients enrolled in cancer clinical trials.
Following successful campaigns in Maryland and California,
LLS launched campaigns in New York, Pennsylvania, Ohio
and Iowa.
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Citations and Acknowledgements
E, Hachey M, Howe HL, Feuer EJ. CA A Cancer Journal
for Clinicians. Vol. 57, January/February, 2007, pp. 30-42.
http://caonline.amcancersoc.org/cgi/content/full/57/1/30
SEER (Surveillance, Epidemiology, and End Results)
Cancer Statistics Review, 1975-2005. Ries LAG, Melbert
D, Krapcho M, Stinchcomb DG, Howlander N, Horner
MJ, Mariotto A, Miller BA, Feuer EJ, Altekruse SF, Lewis
DR, Clegg L, Eisner MP, Reichman M, Edwards BK (eds).
National Cancer Institute. Bethesda, MD, based on
November 2007 SEER data submission, posted to the
SEER Web site 2008.
http://seer.cancer.gov/csr/1975_20054/
Acknowledgements
Additional data from SEER*Stat Databases athttp://www.seer.cancer.gov.
Milton Eisner of SEER, NCI, provided statistical
assistance, and Rebecca Siegel, of the American Cancer
Society (ACS), provided ACS’s state-by-state statistics on
myeloma and Hodgkin lymphoma. The Leukemia &
Lymphoma Society extends special thanks to Myrna
Watanabe, Ph.D., for compilation of data for this
publication.
This publication is designed to provide information
in regard to the subject matter covered. It is
distributed as a public service by The Leukemia &
Lymphoma Society Inc. with the understanding that
LLS is not engaged in rendering medical or other
professional services.
Source Citations
“Annual Report To the Nation on the Status of Cancer,
1975-2004, Featuring Cancer in American Indians and
Alaska Natives.” Espey DK, Wu X-C, Swan J, Wiggins C,
Jim MA, Ward E, Wingo PA, Howe HL, Ries LAG, Miller BA, Jemal A, Ahmed F, Cobb N, Kaur JS, Edwards BK.
Cancer Vol. 110, November 15, 2007, pp. 2119-2152.
Published online 15 Oct. 2007.
http://www.interscience.wiley.com, DOI
10.1002/cncr.23044.
Cancer Facts & Figures 2008. Atlanta: American Cancer
Society, 2008.
Cancer Facts & Figures for African Americans 2007-2008.
Atlanta: American Cancer Society, 2007.
“Leukemias.” Mattano L Jr, Nachman J, Ross J, Stock W. InCancer Epidemiology in Older Adolescents and Young
Adults 15 to 29 Years of Age, Including SEER Incidence
and Survival: 1975-2000. Bleyer A, O’Leary M, Barr R, Ries
LAG (eds). National Cancer Institute. Bethesda, MD, NIH
Pub. No. 06-5767. pp. 39-51. 2006.
“A New Method of Estimating United States and State-
Level Cancer Incidence Counts for the Current Calendar
Year.” Pickle LW, Hao Y, Jemal A, Zou Z, Tiwari RC, Ward
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Our mission: Cure leukemia, lymphoma, Hodgkin’s
disease and myeloma, and improve the quality of
life of patients and their families.
Home Office
1311 Mamaroneck Avenue, Suite 310
White Plains, New York 10605
Tel: 888.HELP.LLS
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www.LLS.org
LLS is a nonprofit organization that relies on the generosity of individual, corporate and foundation contributions to advance its mission.