lymphoma patient guide

8/7/2019 Lymphoma patient guide

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LEUKEMIA LYMPHOMA MYELOMA

The Lymphoma GuideInormation or Patients and Caregivers

HOdgKIN ANd NON-HOdgKIN LYMPHOMA


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A Message from John Walter

President and CEO of The Leukemia & Lymphoma Society

The Leukemia & Lymphoma Society (LLS) is committed tobringing you the most up-to-date blood cancer inormation.

We know how important it is or you to have an accurate

understanding o your diagnosis, treatment and support options.

With this knowledge, you can work with members o your

oncology team to move orward with the hope o remission and

recovery.

Our vision is that one day the great majority o people who have

been diagnosed with lymphoma will be cured or they will be able

to manage their illness with good quality o lie. We hope that the

inormation in this booklet will help you along your journey.

LLS is the worlds largest voluntary health organizationdedicated to unding blood cancer research, education and

patient services. Since its ounding in 1949, LLS has invested

more than $600 million in research specifcally targeting blood

cancers. We will continue to invest in research or cures and

programs and services that improve the quality o lie o patients

and their amilies.

We wish you well.

John WalterPresident and CEO


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Introduction

Lymphoma is the name or a group o blood cancers that developin the lymphatic system. Hodgkin lymphoma and non-Hodgkin

lymphoma are the two main types.

Some types o lymphoma are curable. For other types, many

patients are able to keep their disease under control and live good-

quality lives with medical treatment. Progress in treating lymphoma

gives patients more hope than ever beore.

In 2009, about 601,180 people are living with lymphoma

or are in remission. This number includes

About148,460peoplewithHodgkinlymphoma

About452,720peoplewithnon-Hodgkin

lymphoma.

The Lymphoma Guide has sections with inormation or all

types o lymphoma, or Hodgkin lymphoma and or non-Hodgkin

lymphoma.Akeyatthebottomofeachpageshowsyouwhether

the section has

L = Lymphoma inormation

HL = Hodgkin lymphoma inormation

For example, you would see this key on page 13 o the Hodgkin

lymphoma section.

13 HL

Questions? Contact the Information Resource Center at

www.LLS.org or (800) 955-4572.


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NHL = Non-Hodgkin lymphoma inormation

Many people ind that it helps to know the questions to ask about

choosing a specialist and about treatment. The Guide includes

suggested questions to ask your healthcare providers (see thepocket on the inside back cover). For a list o Healthcare Question

Guides about other topics you can print, go to

www.LLS.org/whattoask and click on Healthcare Question

Guides. Or contact the Inormation Resource Center or copies.

Tell Us What You Think. We hope the inormation helps you.

Please tell us what you think at www.LLS.org/publicationeedback.

Click on the link Disease & Treatment Publications - Survey or

Patients, Family and Friends on the Web page.

LLS Has Other Free Materials. Patients and their amilies may

want to learn more about lymphoma ater reading this guide. Free

LLS disease, treatment and support materials are available in printand at www.LLS.org/reematerials. Materials that may be o special

interest to you are noted in the Guide next to this icon:

This LLS guide about lymphoma is or inormation only. LLS does not give medical advice

or provide medical services.

To orer free LLS booklets, contact us atwww.LLS.org or

(800) 955-4572.


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Inside This Guide

Part 1 Understanding Lymphoma 4 AboutMarrow,BloodandBloodCells

The Immune System

AboutLymphoma

Tracking Your Lymphoma Tests

Part 2 Hodgkin Lymphoma 10

Signs and Symptoms

Diagnosis and Staging

Treatment

Part 3 Non-Hodgkin Lymphoma 19

Signs and Symptoms


Treatment

Stem Cell Transplants Under Study for NHL

About Clinical Trials 34Lymphoma Treatment Side Effects 35

Take Care of Yourself 38

Were Here to Help

Medical Terms 40

Join us for the latest information on lymphoma urin our free

teleconferences. go towww.LLS.org or call (800)-955-4572.


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Part 1 Understanding Lymphoma

About Marrow, Blood and Blood Cells

The inormation on this page about normal blood and marrow

may help you understand the lymphoma inormation in the rest o

the Guide.

Marrow is the spongy center inside o bones where blood and

immune cells are made.

Blood cells are made in the marrow. They begin as stem cells.

Stem cells become red cells, white cells and platelets in the

marrow. Then the red cells, white cells and platelets enter the

blood.

Platelets prevent bleeding and orm plugs that help stop bleeding

at the site o an injury.

Red cells carry oxygen around the body. When the number o red

cellsisbelownormal,itiscalledanemia.Anemiamaymakeyou

eel tired or short o breath. It may make your skin look pale.

White cells ight inection in the body. There are two major types

o white cells: germ-eating cells (neutrophils and monocytes) and

lymphocytes(Bcells,Tcellsandnaturalkiller[NK]cells).

Plasma is the liquid part o the blood. It is mostly water. It also

has some vitamins, minerals, proteins, hormones and other natural

chemicals in it.

CheckMedical Terms for wors that are new to you. Or contact the

Information Resource Center atwww.LLS.org or (800) 955-4572.


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The Immune System

The immune system is the bodys deense against inection.

The marrow and the lymphocytes are part o the immune system.

Here are some other parts o the immune system:

Lymph nodes are bean-sized collections o lymphocytes ound

throughout the body. There are about 600 lymph nodes throughout

the body in the neck, armpits, chest, abdomen, groin and some

other parts o the body. Lymphatic vessels connect the lymph

nodes. They contain lymph, a luid that carries lymphocytes.

The spleen is an organ ound on the let side o the body, near the

stomach. It contains lymphocytes and removes worn-out cells rom

the blood.

Some words in the Guide may be new to you. Check

Medical Terms beginning on page 40. Or call the

InformationResourceCenterat(800)955-4572.


www.LLS.org or (800) 955-4572.


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Some Parts of the Immune System

Spleen

Marrow

Lymph nodesare locatedthroughoutthe body.

The normal immune system helps to protect the body

rom inection.


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About Lymphoma

Lymphoma starts with a change to a lymphocyte (a type o white

cell).

The change to the lymphocyte causes it to become a lymphoma cell.The lymphoma cells pile up and orm lymphoma cell masses. These

masses gather in the lymph nodes or other parts o the body.

Choosing a Lymphoma Specialist. Choose a doctor who

specializes in treating lymphoma and knows about the most up-to-

date treatments. This type o doctor is usually called a hematology

oncologist. Or your local cancer specialist can work with alymphoma specialist.

Ways to Find a Lymphoma Specialist

Askyourprimarycaredoctor

Contactyourcommunitycancercenter

Callyourlocalmedicalsociety

Reachouttohealthplanreferralservices

CallLLSforalistofcancercentersorgotowww.LLS.org

and click on Cancer Centers

Useonlinedoctor-finderresources,suchas

TheAmericanMedicalAssociations(AMA)DoctorFinder

TheAmericanSocietyofHematologys(ASH)Finda

Hematologist

See the ree LLS act sheet Choosing a Blood Cancer Specialist

or Treatment Center or inormation on how to contact these

organizations and others.




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It is important to get treatment in a center where doctors are

experienced in the diagnosis and care o patients with lymphoma.

You can view, print or order the ree LLS act sheet

Choosing a Blood Cancer Specialist or TreatmentCenter. Go to www.LLS.org/reematerials or contact

the Inormation Resource Center or a copy.

Information for Veterans. Veterans with Hodgkin lymphoma or NHL

whowereexposedtoAgentOrangewhileservinginVietnammay

be able to get help from the United States Department of Veterans

Affairs.FormoreinformationcalltheDepartmentofVeteransAffairs

at(800)827-1000orvisitwww1.va.gov/AgentOrange.

Before Treatment. Adultsdiagnosedwithlymphomawhomaywant

to have children and parents o children diagnosed with lymphoma

should ask their doctors about ertility and other possible long-

term eects beore beginning treatment.

You can view, print or order the ree LLS act

sheets Fertility; Long-Term and Late Effects of

Treatment in Adults; and Long-Term and Late

Effects of Treatment for Childhood Leukemia or Lymphoma at

www.LLS.org/reematerials. Or contact the Inormation ResourceCenter or copies.

About90percentofpeoplewithlymphomahave

non-Hodgkin lymphoma (NHL). The rest have

Hodgkin lymphoma. There are many dierent kinds

o NHL. See Non-Hodgkin Lymphoma, beginning on

page 19 or more inormation about NHL.




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Questions to Ask Your Lymphoma Doctor. Talk with your

doctor about lymphoma and how the doctor plans to treat the

disease. This will help you to know more about the disease and

treatment. It will help you to be involved and make decisions.

This guide includes questions to ask your doctor about treatment

and questions to help you choose a specialist (see the pocket on

the back inside cover).

Tracking Your Lymphoma Tests

These tips may help you save time and know more about yourhealth:

Askyourdoctorwhycertaintestsarebeingdoneandwhatto

expect.

Discusstestresultswithyourdoctor.

Askforandkeepcopiesoflabreportsinafilefolderorthree-ring binder. Organize the reports in date order.

Findoutifandwhenfollow-uptestsareneeded.

Markappointmentsthatarecominguponyourcalendar.

You can view, print or order the ree LLS bookletUnderstanding Lab and Imaging Tests to learn

more about lab tests and what to expect. Go to

www.LLS.org/reematerials or contact the Inormation Resource

Center or a copy.


www.LLS.org or (800) 955-4572.


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Part 2 Hodgkin Lymphoma

You can view, print or order the ree LLS booklet

Hodgkin Lymphoma or more details about

treatment at www.LLS.org/reematerials. Or contact


Hodgkin lymphoma is one o the most curable orms o cancer.

Doctors dont know what causes most cases o Hodgkin lymphoma.

It is most likely to start when a person is in his or her 20s or 30s.

It is less common in middle age and becomes more common again

ater age 60.

Signs and Symptoms

The most common sign of Hodgkin lymphoma is one or more

enlarged (swollen) lymph nodes. The enlarged lymph node may be in

the neck, upper chest, armpit, abdomen or groin. It is usually painless.

Signs and symptoms o Hodgkin lymphoma may include

Swollenlymphnodes

Coughandshortnessofbreath

Fever

Nightsweats

Tiredness

WeightlossItchyskin.


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Asign is a change in the body that the doctor sees in an

examoralabtestresult.Asymptom is a change in the

body that a patient can see or eel.


Having the correct diagnosis is important or getting the right

treatment. Some patients may need to get a second medical opinion

about the diagnosis beore they begin treatment. Talk to the doctor

about the tests used to make the diagnosis.

Doctors do a test called a lymph node biopsy to ind out i a

patient has Hodgkin lymphoma.

How is a Lymph Node Biopsy Done?

Asurgeonremovesallorpartofanenlargedlymphnode.

Thelymphnodeisexaminedunderamicroscopebya

pathologist (a doctor who looks at cells and tissues

rom the body to detect disease).

It may be important to get another opinion about the

biopsy results rom a second pathologist.

The doctor will do other tests to stage the disease (to see how

widespread the disease is). See Lymphoma Stages on page 13 or

descriptions o the stages.




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The tests or staging include

Bloodteststocheckredcell,whitecellandplateletcounts;

blood tests are also done to check or other signs o disease

BonemarrowteststolookforHodgkinlymphomacellsinthe

marrow

Imagingteststocreatepicturesofthechestandabdomento

see i there are lymphoma masses in the lymph nodes, liver,

spleen or lungs. Examples o imaging tests are

Chest x-ray

CT (computed tomography) scan

MRI (magnetic resonance imaging)

PET (positron emission tomography) scan.

How are the Blood and Bone Marrow Tests Done?

Blood tests. Usually a small amount o blood is taken rom

the patients arm with a needle. The blood is collected in

tubes and sent to a lab.

Bone marrow aspiration.Aliquidsampleofcellsistaken

rom the marrow.

Bone marrow biopsy.Averysmallamountofbonefilled

with marrow cells is taken rom the marrow.




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Lymphoma Stages

Stage I

One lymphnode region

or a single

organ.

Stage III

Two or more

lymph node

regions above

and below the

diaphragm.

Stage IV

Widespread

disease in lymph

nodes and/or

other parts o

the body.

Stage II

Two or morelymph node

regions on the

same side o

the diaphragm.Diaphragm

Diaphragm

PatientsarealsodividedintoAorBcategories.Bcategory

patientshavefever,alotofsweatingand/orweightloss.A

patients do not.

Allstagesoflymphomacanbetreated.


www.LLS.org or (800) 955-4572.


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Bloodandmarrowtestsmaybedoneinthedoctorsofficeorin

ahospital.Abonemarrowaspirationandabonemarrowbiopsy

arealmostalwaysdonetogether.Bothtestsaredonewithaspecial

needle. Some patients are awake or the procedure. They get

medication irst to numb the part o the body that will be used totake the sample o cells. This is usually the patients hip bone. Some

patients are sedated (asleep) or the procedure.

Bloodandmarrowtestsmayalsobedoneduringandafter

treatment. The tests are repeated to see i treatment is destroying

lymphoma cells.

Treatment

Hodgkinlymphomacanbecuredinabout75percentofall

patients. The cure rate in younger patients is about 90 percent.

There are dierent types o Hodgkin lymphoma. Talk to your

doctor about the type o Hodgkin lymphoma that you have andyour treatment choices.

Factors that may aect treatment include

ThetypeofHodgkinlymphoma

Thestageandcategoryofthedisease

Diseasethathasnotrespondedtotreatment Diseasethathascomebackaftertreatment

Othermedicalproblems,suchasaverylowredcellcount

(anemia), diabetes mellitus, heart or kidney disease.


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Combination chemotherapy along with involved ield radiation

therapy is the most common treatment. Involved ield radiation

therapy uses high-energy rays to target the Hodgkin lymphoma

cells. Other parts o the body are protected to reduce harm to

healthy cells.

Chemotherapy without radiation therapy may be the treatment

or patients with widespread Hodgkin lymphoma and ever, night

sweats or weight loss.

Chemotherapyisgivenincycles,usuallyseveralweeksapart.A

number o cycles are needed. The treatment may last rom six to 10

months. It is outpatient treatment or most patients. Some patients

may have to stay in the hospital or a short time i they develop

a ever or have other signs o inection. Some patients who need

antibiotics may stay in the hospital until the inection is gone.

Examples of Chemotherapy Combinations Usedto Treat Hodgkin Lymphoma

ABVDAdriamycin (doxorubicin), bleomycin,

vinblastine and dacarbazine

BEACOPPbleomycin,etoposide,Adriamycin

(doxorubicin), cyclophosphamide, Oncovin

(vincristine), procarbazine and prednisone

Stanford V mechlorethamine, doxorubicin, vinblastine,

vincristine, bleomycin, etoposide and prednisone




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High-dose chemotherapy may also kill normal blood-orming cells

in the marrow. Chemotherapy may cause very low counts o red

cells, white cells or platelets.

Some patients may need a blood transusion or drugs calledblood cell growth actors until the side eects o chemotherapy

wearoff.ExamplesofredcellgrowthfactorsareAranesp

(darbepoetin ala) and Procrit (epoetin ala). These can increase

red cell counts.


Blood Transfusion at www.lls.org/reematerials.

Or you can contact the Inormation Resource Center

or a copy.

Hodgkin lymphoma aects the bodys ability to ight inection.

Chemotherapy and radiation can add to the problem. Good

treatment and ollowing the doctors advice will help lower the risko inection. White cell growth actors may be part o treatment.

Neupogen or Neulasta (also called G-CSF) and Leukine

(also called GM-CSF) can increase the number o neutrophils

(white cells).

See Lymphoma Treatment Side Effects onpage35,formore

inormation.

Autologous Stem Cell Transplantation. Hodgkin lymphoma

patients who have high-dose chemotherapy may also need an

autologousstemcelltransplant.Autologousmeansthatthe

patients own cells are used or the transplant.




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The goal o autologous stem cell transplantation is to help

the body start a new supply o blood cells ater high-dose

chemotherapy. With an autologous transplant

Thepatientsownstemcellsarecollectedfromthepatientsblood or marrow and stored ater the irst cycles o drug

therapy are completed.

Then,thepatientisgivenhigh-dosechemotherapytokillthe

lymphoma cells. This treatment also kills normal stem cells in

the marrow.

Next,thestemcellscollectedbeforechemotherapyareinfused

back into the patients blood through a central line.

This treatment is not a good choice or all lymphoma patients.

The decision to have an autologous transplant depends on a

number o things, such as

Whatothergoodtreatmentchoicesthepatienthas

Thepatientsphysicalabilitytohaveastemcelltransplant.


Blood and Marrow Stem Cell Transplantationor more inormation. Or contact the Inormation

Resource Center or a copy.


www.LLS.org or (800) 955-4572.


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Relapsed Hodgkin Lymphoma. In some patients, Hodgkin

lymphoma may come back (called a recurrence or relapse).

The doctor will treat these patients again with chemotherapy. The

treatment oten gives patients very long disease-ree periods.

Childhood Hodgkin Lymphoma. Children and teens with

Hodgkin lymphoma should be treated at medical centers that

have a pediatric oncology team.

It is important or young adults and parents o children to talk to

members o the oncology team about the

Stageofthedisease

TypeofHodgkinlymphoma

Labtestresults.

Doctors use this inormation about the patients disease inorder to determine the most eective therapy. Children and

young adults with Hodgkin lymphoma are usually treated with

combination chemotherapy, sometimes with the addition o

radiation therapy to increase local control o the disease.

SeeAbout Clinical Trials on page 34 or more inormation.


(800) 955-4572.


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Part 3 Non-Hodgkin Lymphoma

You can view, print or order the ree LLS bookletNon-Hodgkin Lymphoma or more details about

treatment at www.LLS.org/reematerials. Or contact


There are many types o non-Hodgkin lymphoma (NHL). Most

peoplewithNHLhaveaB-celltypeofNHL(about85percent).

TheothershaveaT-celltypeoranNK-celltypeoflymphoma.

NHL that is

Slow-growingiscalledindolentorlow-grade

Fast-growingiscalledaggressiveorhigh-grade.

Talk to your doctor about the type o NHL that you have and your

treatment choices.

There are treatments or every type o NHL. Some patients with

ast-growing NHL can be cured. For patients with slow-growing

NHL, treatment may keep the disease in check or many years.

This can be true even when tests show disease remains in some

parts o the body.




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Some Types of Non-Hodgkin Lymphoma

Slow-Growing or Indolent NHL

Follicular lymphoma the most common slow-growing NHL

Chronic lymphocytic leukemia

Cutaneous T-cell lymphoma

Lymphoplasmacytic lymphoma

Marginal zone lymphoma

Mucosa-AssociatedLymphoidTissue(MALT)Lymphoma

Small cell lymphocytic lymphoma

Waldenstrm macroglobulinemia

Fast-Growing or Aggressive NHL

DiffuselargeB-celllymphomathemostcommonast-growing NHL

AIDS-associatedlymphoma

Anaplasticlargecelllymphoma

Burkittlymphoma

Central nervous system (CNS) lymphoma

Follicular lymphoma (transormed)

Lymphoblastic Lymphoma

MALTlymphoma(transformed)

Mantle cell lymphoma (most types)

Peripheral T-cell lymphoma (most types)




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NHL

You can view, print or order the ree LLS act

sheets Mantle Cell Lymphoma; Cutaneous T-Cell

Lymphoma; or Waldenstrm Macroglobulinemia

or the ree LLS booklet Chronic Lymphocytic Leukemia. Go to

www.LLS.org/reematerials or contact the Inormation Resource

Center or copies.

Signs and Symptoms

The most common sign o NHL is one or more enlarged lymph

nodes in the neck, armpit or groin. Enlarged lymph nodes also can

be near the ears or elbow.

Asign is a change in the body that the doctor sees in

anexamoralabtestresult.Asymptom is a change in

the body that a patient can see or eel.

Signs and symptoms o NHL may include

Swollenlymphnodes

Fever

Nightsweats

Tiredness

Lossofappetite

Weightloss

Rash.


www.LLS.org or (800) 955-4572.


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NHL


Having the correct diagnosis is important or getting the right

treatment. Some patients may need to get a second medical opinion

about the diagnosis beore they begin treatment. Talk to the doctor

about the tests used to make the diagnosis.

Doctors do a test called a lymph node biopsy to ind out i a

patient has NHL. Sometimes a biopsy is done to examine cells rom

other parts o the body, such as the lungs.

How is a Lymph Node Biopsy Done?

Asurgeonremovesallorpartofanenlargedlymphnode.

Thelymphnodeisexaminedunderamicroscopebya

pathologist (a doctor who looks at cells and tissues rom

the body to detect disease).

Thedoctormaylookatthecellsfromthebiopsytoseeif

there are changes in the chromosomes o the NHL cells.

(Each cell in the body has chromosomes that carry genes.

Genes give the instructions that tell each cell what to do.)

It may be important to get another opinion about the biopsy

results rom a second pathologist.

Immunophenotyping is done to ind out i the patients NHL cells

areBcellsorTcells.Thisisalabtestthatcanbedoneusingthe

sample o cells rom the lymph node biopsy or with blood or bone

marrow biopsy samples.


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The doctor will do other tests to stage the disease. See Lymphoma

Stages on page 13 or descriptions o the stages.

Aphysicalexam,labandimagingtestshelpthedoctortoseehow

widespread the disease is. The doctor will check Thenumberoflymphnodesthatareaffected

Wheretheaffectedlymphnodesare(forexample,intheabdomen

or the chest or in both parts o the body)

Whetheranycancercellsareinotherpartsofthebodybesides

the lymph nodes or lymphatic system, such as the lungs or liver.

The tests or staging include

Bloodteststocheckredcell,whitecellandplateletcounts.

Bloodtestsarealsousedtolookforothersignsofdisease.

BonemarrowteststolookforNHLcellsinthemarrow.

Imagingteststocreatepicturesofthechestandabdomentosee

i there are lymphoma masses in the lymph nodes, liver, spleen or

lungs. Examples o imaging tests are

Chest x-ray

CT (computed tomography) scan

MRI (magnetic resonance imaging)

PET (positron emission tomography) scan.

Other staging tests may be done or some types o NHL.




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Treatment

The doctor has to take into account many actors to make a

treatment plan or a patient with NHL, including

ThetypeofNHL

Thestageandcategoryofthedisease

Thepatientsoverallhealth.

Types o treatment are

ChemotherapythemaintypeoftreatmentforNHL

DrugtherapyRituxan (rituximab) and certain other drugs are

used to treat some types o NHL

Radiationtherapyanimportantaddedtreatmentgivenalong

with chemotherapy or some types o NHL

StemcelltransplantationaprocedureforsometypesofNHL

WatchandwaitanapproachforsometypesofNHL

Newtypesoftreatmentnowunderstudyinclinicaltrials.

Chemotherapy is given in cycles, usually several weeks apart.

Patients need a number o cycles o treatment. The treatment may

last rom six to 10 months.




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NHL

High-dose chemotherapy may also kill normal blood-orming cells

in the marrow. Chemotherapy may cause very low counts o red

cells,whitecellsorplatelets.Aredcelltransfusionordrugscalled

blood cell growth actors may be needed until the side eects o

chemotherapy wear o.


Blood Transfusion at www.lls.org/reematerials. Or

you can contact the Inormation Resource Center

or a copy.

Examples o these growth-actor drugs are

Aranesp (darbepoetin ala ) and Procrit (epoetin ala) these

can increase the red cell count

Neupogen or Neulasta (also called G-CSF) and Leukine

(also called GM-CSF) these can increase the number o

neutrophils (white cells).

Most treatment or NHL usually takes place in an outpatient

setting. Some patients may need to stay in the hospital or a short

time or example, i they develop a ever or have other signs o

inection. Some patients who need antibiotics may stay in the

hospital until the inection is gone.


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Some Drug Combinations Used to Treat NHL

Many drug combinations are used to treat NHL. The

drug choice depends on the type o NHL and the stage o

treatment.

AnumberofdrugcombinationsincludeRituxana

monoclonal antibody therapy. Monoclonal antibody

therapies kill certain types o cancer cells. They can cause

side eects but do not cause many o the side eectscaused by chemotherapy.

R-CHOP: Rituxan, cyclophosphamide, doxorubicin

(hydroxydoxorubicin), Oncovin (vincristine) and,

prednisone

R-FCM: Rituxan, ludarabine, cyclophosphamide andmitoxantrone

R-CVP or F-CVP: Rituxan or ludarabine, plus

cyclophosphamide, vincristine and prednisone

R-HCVAD: Rituxan, cyclophosphamide, vincristine,

Adriamycin (doxorubicin) and dexamethasone alternating

with R-MTXAraC: Rituxan, methotrexate, cytarabine

(ara-C)


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Rituxan for NHL Treatment Types and Stages

Disease-Type Treatment-Stage Treatment

Follicular, CD20-positive,B-cell

Newly diagnosed(irst-line treatment)

R-CVP(Rituxan +cyclophosphamide,vincristine andprednisone)

Low-grade,or ollicular,CD20-positive,B-cell

Maintenance ostable disease orpartial or completeresponse aterirst-line treatmentwith CVP

RituxanRelapsed orreractory

Relapsed orreractory ater

initial Rituxantreatment

CD20-positive,Diuse largeB-cell

Newly diagnosed(irst-line treatment)

R-CHOP(Rituxan +cyclophosphamide,doxorubicin, Oncovin andprednisone) or certain

other anthracycline-basedchemotherapies




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Some Other Drugs Used to Treat NHL

Treanda (bendamustine) adrugthatisFDA-approvedto

treatpatientswithrelapsed,slow-growingB-cellNHLthathas

progressed during or within six months of treatment with Rituxan

or a Rituxan-containing regimen. Treanda is also approved to

treat patients with chronic lymphocytic leukemia (CLL).

Bexxar (tositumomab) and Zevalin (ibritumomab) two

monoclonalantibodiesthatareFDA-approvedtotreatNHL.

These are called radioimmunotherapies. This means that they

carry a radioactive substance to the lymphoma cells, reducingradiation side eects to normal cells. The treatment is approved

or relapsed or reractory CD20-positive, low-grade, ollicular or

transformedB-celllymphomas.

Velcade(bortezomib) adrugthatisFDA-approvedtotreat

mantle cell lymphoma and is also being studied in clinical trialsor some other types o NHL.

Relapsed or Refractory NHL. Disease can come back months

or years ater treatment ends. This is called relapsed NHL. Or,

some patients may not respond to treatment or newly diagnosed or

relapsed NHL. This is called reractory NHL.

Doctors can change the patients treatment or give added treatment.

There are many drug choices and approaches to treatment. I

relapse occurs long ater treatment, the same drugs that were

used or the patient beore may be eective. In other cases, new

drugs or treatment approaches are used. Patients with reractory

NHL should talk with the doctor about the risks and beneits oparticipating in a clinical trial.




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Childhood NHL.Burkittlymphomaisthemostcommontypeof

NHLsubtypeinchildrenaged5through14years.Diffuselarge

B-celllymphomaisthemostcommontypein15-to29-year-olds.

Children and teens with NHL should be treated at medicalcenters that have a pediatric oncology team.

It is important or young adults and parents o children to talk to

members o the oncology team about the

Stageofthedisease

TypeofNHL

Labtestresults.

Doctors use this inormation about the patients disease in order

to determine the most eective therapy. Treatments used or

children with NHL may be dierent rom those used or adultswith NHL.

Watch and Wait for Slow-Growing NHL. In most cases, a

patientbeginstreatmentforNHLrightaway.Butwhenapatient

has NHL that is widespread throughout the body and is not

growing or is growing slowly, the doctor may recommend a

watch and wait approach.

The watch and wait approach means that a doctor watches a

patients condition but does not treat with drugs or radiation

therapy. Patients may think that they should have treatment

rightaway.Butforpatientswithslow-growingdiseaseandno

symptoms, it is common not to start treatment. This allows thepatient to avoid side eects o therapy until treatment is needed.


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NHL

Patientsinwatchandwaitneedfollow-upvisitswiththedoctor.At

each oice visit the doctor will check or any health changes. The

results o exams and lab tests over time will help the doctor advise

the patient about

Whentostarttreatment

Thetypeoftreatmenttohave.

Treatment will begin i a patient develops symptoms or there are

signs that the NHL is starting to grow.

Patients may be treated with one to ive drugs. The goal o treatment

is a series o remissions each lasting a number o years. This can

be true even when tests show disease remains in some parts o the

body. Many patients lead active, good-quality lives.

Maintenance for Slow-Growing NHL. People with some types

o slow-growing lymphoma may stay in treatment to protect theirremission. This is called maintenance treatment.

Radiation Therapy. Radiation uses high-energy rays to kill

lymphoma cells in one area. Radiation can be used along with

chemotherapy when there are very large masses o lymphoma cells

in a small area o the body. Radiation can also be used when largelymph nodes are pressing on an organ (such as the bowel) and

chemotherapy cannot control the problem. Radiation usually isnt

the only treatment or NHL because the lymphoma cells are likely

to be in many areas o the body.


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NHL

Stem Cell Transplantation. Astemcelltransplant(sometimes

called a bone marrow transplant) is used to treat some patients

with NHL.

Donated stem cells (allogeneic transplant) or the patients own

stem cells (autologous transplant) are inused into the patients

blood ater chemotherapy ends.

More inormation about allogeneic stem cell transplantation

ollows. Inormation about autologous stem cell transplantation

begins on page 33.


Blood and Marrow Stem Cell Transplantation

and the ree act sheet Cord Blood Stem Cell

Transplantation or more inormation. Or contact the Inormation

Resource Center or copies.

Allogeneic Stem Cell Transplantation. Stem cells rom a donor

are transused into the patients blood ater chemotherapy ends.

Sometimesthedonorcanbeabrotherorasister.Apersonhas

about a 1 in 4 chance o having stem cells that match his or her

brothers or sisters stem cells. When there is no related donor, the

donor can be an unrelated person with stem cells that match the

patients.

High-dose chemotherapy is given to patients to kill lymphoma cells

in the body beore a stem cell transplant.

The transplanted stem cells go rom the patients blood to the

marrow. The stem cells start a new supply o red cells, white cells

(including immune cells) and platelets.




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NHL

The donated stem cells make immune cells that do not totally

matchthepatientscells.Agoalofthistherapyisforthedonor

immune cells to recognize that the patients lymphoma cells do

not belong in the patients body and to kill them. This desired

eect is called grat versus lymphoma.

Allogeneicstemcelltransplantationcanbeahigh-risktreatment.

The decision to do a transplant depends on

Thepatientsage

Thepatientsoverallhealth

Howwellthedonorcellsandpatientcellsmatch

Thepatientsresponsetodrugtherapy.

The decision also depends on the patients understanding o the

beneits and risks o the transplant. I the doctor thinks a patient

might beneit rom a transplant, he or she will talk about these

actors with the patient.

Allogeneicstemcelltransplantationismostsuccessfulinyounger

patients. Patients up to about 60 years o age who have a matched

donor may be considered.

Stem Cell Transplants Under Study for NHL

Doctors are studying the types o stem cell transplantation called

autologous stem cell transplantation and reduced-intensity

transplantation. These may be helpul or some patients.




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NHL

Autologous Stem Cell Transplantation. Many patients with

lymphoma cannot have an allogeneic stem cell transplant. Doctors

are studying the use o autologous stem cell transplantation in

clinical trials to treat certain NHL patients. This type o transplant

is used to treat patients with other kinds o blood cancer. In these

cases, it is not a cure, but it can give patients longer disease-

ree periods than standard-dose chemotherapy without stem cell

transplantation.

The goal o autologous stem cell transplantation is to help

the body start a new supply o blood cells ater high-dosechemotherapy. With an autologous transplant

Thepatientsownstemcellsarecollectedfromthepatients

blood or marrow and stored ater the irst cycles o drug therapy

are completed.

Then,thepatientisgivenhigh-dosechemotherapytokillthelymphoma cells. This treatment also kills normal stem cells in

the marrow.

Next,thestemcellscollectedbeforechemotherapyareinfused

back into the patients blood through a central line.

Reduced-Intensity Transplantation. The reduced-intensity

transplant (also called a nonmyeloablative transplant) is also

under study. It uses lower doses o chemotherapy in combination

with an allogeneic stem cell transplant. Older and sicker patients

may be able to be helped by this treatment.


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About Clinical Trials

Clinical trials are used to study new drugs, new treatments or newuses for approved drugs or treatments. Doctors are testing new drugs

and new combinations of drugs in clinical trials to treat all types of

lymphoma.Agrowingnumberofclinicaltrialsincludeolderadults.

There are clinical trials for

Newlydiagnosedlymphomapatients

Patientswhodonotgetagoodresponsetotreatment

Patientswhorelapseaftertreatment

Patientswhocontinuetreatmentafterremission(maintenance).

Some clinical trials test new ways to use drugs that are already

approved. For example, changing the amount of the drug or givingthe drug along with another type of treatment might be better.

Askyourdoctoriftreatmentinaclinicaltrialisrightforyou.You

can also call the Information Resource Center for information

aboutclinicaltrials;oruseourfreeclinicaltrialsserviceat

www.LLS.org/clinicaltrials.

You can view, print or order the free LLS booklet

Understanding Clinical Trials for Blood Cancers at

www.LLS.org/freematerials or contact the Information

Resource Center for a copy. You can also watch the free LLS Web

video My Clinical Trials Journey at www.LLS.org/journeys.


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Lymphoma Treatment Side Effects

There are many possible side eects o treatment or Hodgkinlymphoma and NHL. Patients react to lymphoma treatment in

dierent ways. Most side eects are mild and last only a short time.

Other side eects may be serious or last a long time. When side

eects occur, most

Canbehelpedwithtreatment

Donotlastlong

Clearupwhentreatmentends.

The number o red cells may decrease (this is called anemia) in

patientstreatedwithchemotherapy.Bloodtransfusionsorgrowth

factorstoincreaseredcellsmaybeneeded.Aranesp

and Procrit

are drugs that might be given to increase the red cell count.

Aseveredropinwhitecellsmayleadtoaninfection.Infections

caused by bacteria or ungi are treated with antibiotics. To help a

patients white cell count to improve

Theamountofchemotherapydrugsmaybereduced.

Thetimebetweentreatmentsmaybeincreased.

Growthfactors,suchasNeupogen, Neulasta and Leukine,

may be given to increase neutrophil counts.




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Common Side Effects. Some o the common side eects o

treatment or Hodgkin lymphoma and NHL may include

Mouthsores

Nausea

Vomiting

Diarrhea

Constipation

Bladderirritation

Bloodintheurine.

Other side eects o treatment may include

Extremetiredness

Fever

Cough

Rash

Hairloss

Weakness

Tinglingsensation

Lung,heartornerveproblems.

Talk to your doctor about the possible side eects o your treatment.

You can also call the Inormation Resource Center.




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Fertility. The ability to conceive a baby may be aected by

lymphoma treatment in both men and women. Patients who are

concerned about ertility should to talk to their doctors beore

treatment begins. For example, men who plan to have children

in the uture may want to consider banking sperm beore starting

treatment. I a couples ability to have children is not aected by

treatment, their chance to have a healthy baby is the same as that

o the general population.

Patients should talk with their healthcare providers about any

long-term eects o treatment. Cancer-related atigue is one type olong-term eect.


Understanding Drug Therapy and Managing Side

Effects and the ree act sheets Fertility; Fatigue;

Long-Term and Late Effects of Treatment in Adults; and Long-

Term and Late Effects of Treatment for Childhood Leukemia

or Lymphoma or more inormation. Or contact the Inormation

Resource Center or copies.

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www.LLS.org or (800) 955-4572.


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Take Care of Yourself

Keepallappointmentswiththedoctor.

Discusshowyoufeelwithmembersofthehealthcareteamat

each visit.

Followthedoctorsadviceforpreventinginfection.

Eathealthyfoodseachday.Itisokaytoeatfourorfivesmaller

meals instead of three bigger ones.

Contactthedoctorabouttirednessorothersymptoms.

Donotsmoke.Patientswhosmokeshouldgethelptoquit.

Getenoughrestandexercise.Talkwithyourdoctorbeforestarting

an exercise program.

Keepahealthcarefilewithcopiesoflabreportsandtreatment

records.

Seethefamilydoctortokeepupwithotherhealthcareneeds.

Talk with family and friends about how you feel. When family and

friends know about lymphoma and its treatment, they may worry less.

Seekmedicaladviceifyourmooddoesnotimproveovertime.

For example, if you feel sad or depressed every day for a two-week

period, seek help. Depression is an illness. It should be treated

even when a person is being treated for lymphoma. Treatment for

depression has benefits for people living with cancer.

Rememberthattheoutlookforlymphomapatientsisimproving.

New treatments and cures for more patients are on the horizon.

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(800) 955-4572.


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Were Here to Help

The Leukemia & Lymphoma Society (LLS) has chapters around

the nation. LLS chapters oer support groups and can also arrange

or a patient to talk with another person who has the same type o

lymphoma.Tofindthechapterinyourarea,call(800)955-4572.

Or visit the Web site at www.LLS.org.

For more information and support. You can watch

the free LLS Web video My Personal LymphomaJourney at www.LLS.org/journeys. The free LLS

booklets Each New Day: Ideas for Coping with Blood Cancers and

Financial Health Matters may be helpful to you. LLS also has free

booklets for and about children. You can view, print or order any

of these at www.LLS.org/freematerials. Or contact the Information

Resource Center for copies of any LLS booklets.

Language Services

Members of your healthcare team want you to understand the

information they are giving you. Let your doctor know if you

want a professional healthcare interpreter who speaks your

native language or uses sign language. Many times, this is a free

service. Contact a patient advocate if you are not sure. For more

information, contact the Information Resource Center (IRC) at

(800)955-4572.LanguageservicesareavailableforIRCcalls.




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Medical Terms

Antibiotics. Drugs that are used to treat inections caused by

bacteria and ungi. Penicillin is one type o antibiotic.

Antibodies. Proteins that help ight inection in the body.

Chemotherapy or drug therapy. Treatment with chemical agents

to treat lymphoma and other diseases.

Chromosomes.Anyofthe23pairsofcertainbasicstructures

in human cells. The chromosomes are made up o genes. Genes

give the instructions that tell each cell what to do. The number

or shape o chromosomes may be changed in blood cancer cells.

Clinical trials. Careul studies done by doctors to test new drugs

or treatments, or new uses or approved drugs or treatments. The

goal o clinical trials or blood cancers is to improve treatment

and quality o lie and to ind cures.

Combination chemotherapy or drug therapy. The use o two or

more drugs together to treat lymphoma and other diseases.

FDA. The short name or the United States Food and Drug

Administration.PartoftheFDAsjobistoassurethesafety,and

security o drugs, medical devices, and the U.S. ood supply.

Hematologist.Adoctorwhotreatsbloodcelldiseases.




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Medical Terms

Immune response. The reaction o the body to oreign

material. Examples o oreign material are an inection-causing

microorganism, a vaccine or the cells o another person used oran allogeneic stem cell transplant.

Immune system. Cells and proteins that deend the body against

inection. Lymphocytes, lymph nodes and the spleen are some

parts o the immune system.

Immunophenotyping.Alabtestthatcanbeusedtofindoutif

thepatientslymphomacellsareBcellsorTcells.

Monoclonal antibody therapy.Atypeoftherapythattargetsand

kills cancer cells. Monoclonal antibodies are immune proteins

made in the laboratory. They are designed to attack a speciicblood cancer cell. These agents produce ewer toxic eects on

normal tissues than chemotherapy does.

Oncologist.Adoctorwhotreatspatientswhohavecancer.

Pathologist.Adoctorwhoidentifiesdiseasesbystudyingcellsand tissues under a microscope.

Platelet. Atypeofbloodcellthathelpspreventbleeding.

Platelets cause plugs to orm in the blood vessels at the site o an

injury.


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Medical Terms

Radioimmunotherapy.Atreatmentthatusesantibodiestocarrya

radioactive substance to lymphoma cells to kill them.

Refractory lymphoma. Lymphoma that has not responded to

initial treatment. Reractory disease may be disease that is getting

worse or staying the same.

Relapsed lymphoma. Lymphoma that responded to treatment but

then returns.

Remission. No sign o the disease and/or a period o time when

the disease is not causing any health problems or the patient.

Spleen. Anorganfoundontheleftsideofthebody,nearthe

stomach. It contains lymphocytes and removes red cells that no

longer work rom the blood.

Stem cell.Atypeofcellfoundinmarrowthatmakesredcells,

white cells and platelets.

White cell.Atypeofbloodcellthathelpsthebodyfightinfection.


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Notes

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Pocket foler


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or:

Home Office

1311 Mamaroneck Avenue

White Plains, NY 10605

Information Resource Center (IRC) 800.955.4572 (Lanuae interpreters available upon request.)

www.LLS.or

Our Mission: Cure leukemia, lymphoma,

Hodgkins disease and myeloma, and improve the

quality of life of patients and their families.

LLS is a nonprofit oranization that relies on the enerosity of iniviual , founation an corporate contributions to

avance its mission.

For more information, please contact:

lymphoma patient guide

Documents