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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


15 Table 11: Incidence Rates by Gender, for Whites, per 100,000


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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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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“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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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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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

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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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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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


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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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


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 (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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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


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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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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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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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.


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)


Leukemia 12.9 16.7 9.9



Myeloma 5.2 6.6 4.1


Incidence Rates by Gender, for Whites, per 100,000Population (2001-2005)


Leukemia 10.1 13.0 8.0



Myeloma 11.6 14.4 9.8


Incidence Rates by Gender, for Blacks, per 100,000Population (2001-2005)

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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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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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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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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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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

Information Resource Center (IRC): 800.955.4572

www.LLS.org

LLS is a nonprofit organization that relies on the generosity of individual, corporate and foundation contributions to advance its mission.

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