#220
Birmingham, AL 35244
205-989-0098
The Leukemia & Lymphoma Society is the world's largest voluntary health organization dedicated to funding blood cancer research, education, and patient services. The Society's mission: Cure leukemia, lymphoma, Hodgkin's disease and myeloma, and improve the quality of life of patients and their families.
"At a very scary time in my life, the Society reached out to me with understanding and real financial assistance. I cannot begin to express what this meant to me at a time when it felt like my world was falling apart."
"When my child was diagnosed with ALL, it felt like our whole family was turned upside down. The Society was there for me, and paired me with another mom who’s child also had this disease. Being able to talk with someone who had ‘walked in my shoes’ was more helpful than you’ll ever know."
"At a very scary time in my life, the Society reached out to me with understanding and real financial assistance. I cannot begin to express what this meant to me at a time when it felt like my world was falling apart."
"When my child was diagnosed with ALL, it felt like our whole family was turned upside down. The Society was there for me, and paired me with another mom who’s child also had this disease. Being able to talk with someone who had ‘walked in my shoes’ was more helpful than you’ll ever know."
These are some of the most frequently asked questions, from patients, family members, co-workers and friends contacting one of The Leukemia & Lymphoma Society's chapters or the Society's Information Resource Center
Choosing a physician can be a very difficult and often deeply personal decision. The Society does not offer a list of "best" physicians. The Society's Fact Sheet "Choosing A Specialist" offers detailed information with direct links to tools that can assist in making an informed choice. Listed below are factors to be considered when choosing a physician. For a more detailed discussion view the Fact Sheet on-line.
Credentials; is the doctor an oncologist with expertise in treating the specific blood related cancer that is suspected or diagnosed
Is the physician 's affiliated hospital, or treatment center accredited and experienced in the treatment of blood related cancers
Is the physician able and willing to discuss all possible treatment options; standard treatment and when appropriate, clinical trial options
Insurance coverage; is the physician's services and treatment facility where physician practices covered by the patient's insurance plan
Communication; Is the patient comfortable with the style and level of communication with the physician and their health care team
Time and Geography; how often must the patient visit the physician and is transportation or the cost of transportation and housing an issue.
It is important to select a treatment center that matches your requirements. It may be important to create a list each of the important requirements and then find ways to best fulfill those needs. The decision may be driven by a recommendation from your medical practitioner, your insurance carrier or by the geographic location of your home.
There are several types of settings that should be considered depending on the disease and the willingness of the patient to travel or to participate in a clinical trial. The selection could include a Comprehensive Cancer Center, a Community Clinical Oncology Program, a University Affiliated Hospital or Center or a Community Cancer Center. Each of these designations is used for a particular type of center with a variety of specific functions.
Go to our Web site section Decision Tools for further information including further descriptions of each type of center.
Physicians who specialize in the treatment of lymphoma are called hematologists. They are trained in the management of blood-related disorders and specialize in oncology or cancer treatment. They will coordinate all of the care for a patient with lymphoma including ordering the treatments such as chemotherapy. If a stem cell transplant becomes necessary in treating the disease then the hematologist usually works directly with the transplant team.
No. There is little to no evidence that these diseases are inherited. There are genetic components to the diseases and often there are alterations in the DNA but the cause of these changes is unknown and occurs later in life.
Survival is measured in several ways so it is important to define each measure. The survival statistics are often presented as five-year survival, that is, the percentage of people who survive five years from the date of diagnosis. The five-year survival rates for the blood cancers (for all age groups) are: leukemia 49%; Hodgkin lymphoma 86%; non-Hodgkin lymphoma 63% and myeloma 33%. Leukemia rates by type of disease (for all age groups) are: ALL 65.2%; CLL 74.2%; AML 20.4% and CML is 42.3%. These figures differ for children ages 0-19 and people over 75.
The Society's Patient Financial Aid program provides supplementary financial assistance to patients in need. The program is supported entirely by public contributions. To apply for the program, simply contact your local chapter or fill-out and return the convenient online application (Word 6.0 document) to your local chapter.
Patient Services
The Society offers many free services for patient and families through its 59 chapters, Visit the information resource center and this website. Click on Find Support for a description of the Society's Chapter Programs such as:
* Education Programs for survivors, families and friends
* Family Support Groups
* First Connection- a telephone support program linking you with a trained peer volunteer who has experienced a similar situation
* Trish Greene Back to School Program for Children with cancer
* Patient Financial Aid Program Click on the Chapter to locate the chapter nearest you.
* The Information Resource Center (IRC) offers one on one interaction with a Leukemia & Lymphoma Society Information Specialist for blood related cancer disease and coping information. Email the IRC a question or within the United States call us at 1-800-955-4572.
Web-site Services:
* Personalize your pages to view information and receive periodic News and email updates on pre-selected topics
* Visit the Bulletin Board and choose a topic(s) of interest to discuss with peers
* Visit the Patient Services and Disease Information sections of this web-site and the web-event calendar for updated disease and support information.
Side effects of treatment with chemotherapy agents are usually discussed with patients before the treatment is started. If detailed information about particular drugs is needed use the booklet entitled Understanding Drug Therapy published by the Society. From the perspective of the physician the side effects of greatest concern may be fever, breathing difficulties, hives or rashes, rapid heartbeat, confusion, and redness or pain at the IV site. From the patient's perspective, any side effect causing discomfort or limiting usual activity such as diarrhea or nausea is a concern. Report any of these side effects when they first appear. Sometimes the more common side effects can be managed with medications to reduce discomfort.
Usually people are looking for the most recent advances in applied or clinical research. The press often reveals these findings and disease outcomes as a news article. Check the News and Research Reports section of this site for updates on blood related cancers. Go to our Clinical Trials section for information on how new treatment options are developed and how to find out about current Clinical Trial options for your disease. Personalize this Web site to send you news on pre-selected topics of interest. Periodically ask members of your health care team for research updates on your disease and how they might or might not currently apply to the management of your disease. Do not hesitate to ask all members of the health care team including your family physician. The hematologist/oncologist is often the best-informed person in the health care team regarding research advances.
For Scientists:
All Society Research Grant Programs are open for applicants worldwide. The Society features select professional and patient education programs globally via this Web site. To view these programs click to The Society's web cast education calendar.
For Patients & Caregivers
The Society features disease information and select professional and patient education programs globally via this web-site. To view or listen to these programs click to The Society's web event calendar. Persons visiting this web site can personalize the information they view and receive periodic email updates on selected topics of interest. Users may also speak with others coping with blood related cancers by joining our Web site bulletin board.
The Leukemia & Lymphoma Society Patient Financial Aid Program, Family Support Groups and First Connection Program are available only for people residing in the United States.
The Leukemia & Lymphoma Society is committed to reaching out to those with leukemia, Hodgkin and non-Hodgkin lymphoma and myeloma in meaningful ways. Programs have been developed all over the country to meet the needs of patients, families and oncology professionals; the people who deal with blood cancer every day and the people who care for them.
We have listened to the feedback from patients, volunteers and scholars. We have heard that the day-to-day benefits they receive from support, outreach, community and our strong research program make a difference.
The Society's programs for patients and their families include:
*Family Support Groups - Healthcare professionals lead regularly scheduled group meetings, bringing together patients, families and friends
*First Connection (Peer-to-Peer) Program - First Connection is a peer-to-peer telephone support program linking patients and their families with a trained volunteer who has experienced a similar situation
*Back to School - The Trish Greene Back to School Program for Children with Cancer is designed to increase communication among healthcare professionals, parents, patients and school officials to assure a smooth transition from active treatment back to school and daily life
*Finances - The many challenges of a blood-related cancer diagnosis include managing your household finances and healthcare insurance, and understanding your rights in the workplace as a cancer survivor or a caregiver
*Education Programs - The Leukemia & Lymphoma Society offers patient and family education and information for individuals living with cancer
*For Caregivers - When someone is diagnosed with a blood cancer it will dramatically affect the lives of families and all others who have a relationship with the patient
*Helpful Links - Follow the links to organizations that can help you cope with blood-related cancers
*End-of-Life - This section assists patients and families navigate the challenges and concerns of the terminal phase of an illness.
*Grief - This section contains information to help those living with grief and the pain of loss of a loved one.
*Accessing Home Care - Learn about home-care services
People who have recently received a diagnosis of a blood cancer often have questions about the disease, the prognosis and the treatments available. This section of the Web site is arranged to provide information to answer some of these questions and assist patients in finding additional resources.
It is important to learn about the disease, but also to learn about your insurance coverage, healthcare facilities and how to obtain support for yourself and your family. Specific questions may also be answered by information specialists at The Leukemia & Lymphoma Society’s Information Resource Center.
The word "diagnosis" means to distinguish or identify a disease. Patients usually arrive at the doctor's office with a series of complaints or symptoms. Through questioning and examination the physician may also observe abnormal "signs," such as an enlarged spleen. The results of laboratory tests provide further information. The accumulated evidence leads the physician to a decision about the final diagnosis.
Patients who receive a diagnosis often wish to learn more about the disease and the tests used to determine the diagnosis. This section is here to assist
