Description: These are some of the most frequently asked questions from patients, family members, co-workers and friends contacting one of The Leukemia & Lymphoma Society (LLS) chapters or the Information Resource Center.
Please contact the Information Resource Center at (800) 955-4572 or at Contact Us for clarification on any Q & A. Information Specialists are available to answer your questions Monday through Friday, 9 a.m. to 6 p.m., Eastern Standard Time. You may leave a message at (800) 955-4572, 24 hours a day and an information specialist will return your call by the next business day.
1.Who is the best doctor for my diagnosis?
Choosing a physician can be a difficult and personal decision. LLS does not offer a list of the "best" physicians. The free LLS fact sheet "Choosing A Specialist" offers detailed information with links to tools that can assist you in making a choice. Factors to consider when choosing a physician are listed below. For more information see "Choosing a Specialist" and our Web page "Making Treatment Decisions."
Credentials: Is the doctor an oncologist with expertise in treating the specific blood cancer that is suspected or diagnosed?
Is the physician's affiliated hospital or treatment center accredited and experienced in the treatment of blood cancers?
Is the physician able to discuss all treatment options: standard treatment and when appropriate, clinical trial options?
Insurance coverage: Are the physician's services and the 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 healthcare team?
Time and Geography: How often will the patient need to visit the physician and is transportation or the cost of transportation and housing an issue?
Questions? Email us.
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2.How can I find the best treatment center?
Selecting a treatment center that matches your needs is important. You may want to create a list of your requirements and then find ways to best address those needs. The decision about where to get treatment may be based on a recommendation from your medical practitioner, your insurance carrier or by the geographic location of your home. Your choice may depend on the diagnosis, treatment (including participation in a clinical trial)and ability and willingness to travel. 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.
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3.What type of doctor specializes in lymphoma?
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.
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4.Is leukemia (or lymphoma, myeloma) inherited?
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. Click on Diseases to find information on causes for the most common blood -related cancers.
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5.What are the statistics for the survival of leukemia, lymphoma and myeloma?
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 50%; Hodgkin lymphoma 86%; non-Hodgkin lymphoma 64% and myeloma 34%. Leukemia rates by type of disease(for all age groups)are: ALL 65.3%; CLL 74.8%; AML 20.7% and CML is 44.4%. These figures differ for children ages 0-19 and people over 75.
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6.Does The Leukemia & Lymphoma Society offer any financial assistance?
LLS has a Patient Financial Aid program that 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 complete and return the financial aid application to your local chapter.
LLS also has a Co-Pay Assistance Program that offers financial support towards the cost of insurance co-payments and/or insurance premium costs for prescription drugs. Patients must qualify both medically and financially for this program.
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7.What services does The Leukemia & Lymphoma Society provide?
Patient Services:
LLS offers many free services for patient and families through its Home Office and Chapters across the United States and Canada, including its Information Resource Center and this Web site. Click on Find Support for a description of LLS's Chapter Programs such as:
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8.I'm on chemotherapy and do not know which side effects I need to call my physician about.
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 LLS. 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.
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9.How can I find out the latest research in treating my disease?
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.
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10.Do you offer services for patients living outside of the United States?
For Scientists:
All LLS Research Grant Programs are open for applicants worldwide. LLS features select professional and patient education programs globally via this Web site. To view these programs click to LLS's webcast education calendar.
For Patients & Caregivers:
LLS features disease information and select professional and patient education programs globally via this web-site. To view or listen to these programs click to LLS'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 cannot financially assist persons wishing to travel to the United States for treatment. The St. Jude's Hospital for Children in Memphis Tennessee will provide free services to children from outside the United States if they are previously untreated and/or currently are eligible for one of St. Jude's Clinical Trial programs.
The National Cancer Institute provides a list of International Cancer Information Centers that provide information and referral for patients and families and a list of other International organizations dedicated to cancer research and treatment at http://cis.nci.nih.gov/resources/international.htm
Additional questions? Email us.
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11.How do I get my medical records from a doctor?
If you want to have a copy of your medical records, you must submit a written request to the hospital or physician's office. A health care provider must have the patient's written authorization to disclose medical records or the information contained in them. Some hospitals have their own form that needs to be completed.
Patients may receive copies of their medical records, however the originals must remain in the physician's or hospital's file.
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12.What is Medicare Part D and how can I find out if I am eligible?
Medicare is offering a variety of prescription drug plans administered by insurance and other private companies. Anyone with Medicare Part A and/or B can join. The plan is referred to as Medicare Part D and is optional. Patients need to enroll in a Medicare Part D plan in order to receive the prescription drug benefit.
Like other insurance, there is a monthly premium, a yearly deductible and co-payments for part of the cost of prescriptions. Those amounts- and the drugs they cover- will vary by plan. The Medicare program offers a “drug finder tool” that will help patients evaluate coverage of plans in their region. It can be found at: http://plancompare.medicare.gov/formularyfinder/selectstate.asp
To find out more information on Medicare Part D contact the Centers for Medicare and Medicaid Services (CMS) at: http://www.medicare.gov or 1-800-MEDICARE.
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13.What are clinical trials and how can I learn more about them?
A cancer clinical trial, sometimes called a research study, is a study conducted by medical scientists to improve the care and treatment of cancer patients. There are clinical trials that test and develop new and improved ways to diagnose and treat cancer in people, prevent or alleviate treatment side effects, help prevent a recurrence of cancer or improve the comfort and quality of life of persons with cancer.
Clinical trials are important for the treatment of leukemia, Hodgkin and non-Hodgkin lymphoma, myeloma, myelodyplastic syndromes or myeloproliferative diseases (blood cancers) because they provide promising new treatment options and offer the hope of increased survival and/or improved quality of life. A treatment that is proven safe and effective in a cancer clinical trial will often be approved by the U.S. Food and Drug Administration (FDA) and become a standard treatment for future patients with cancer.
Order or read online the free LLS booklet "Understanding Clinical Trials for Blood Cancers" for more information. In addition, Information Resource Center IRC) staff are skilled in providing assistance to people searching for clinical trial programs. You may reach the IRC by calling LLS at(800) 955-4572, by using the Live Help feature on the LLS Web site or by sending an email.
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14.What is a remission?
A complete disappearance of a disease, usually as a result of treatment. The terms complete or partial are used to modify the term remission. Complete remission means all evidence of the disease is gone. Partial remission means the disease is markedly improved by treatment, but residual evidence of the disease is present.
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15.What does “Watch and Wait” or “Watchful Waiting” mean?
Watchful Waiting is an approach that is used to closely monitor a patient’s condition without giving any treatment until symptoms appear or change. The doctor will monitor patients for disease progression and other signs and symptoms. It is usually recommended for patients in early stages of indolent or chronic forms of blood cancers.
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