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  • Common Questions - National Bone Marrow Transplant Link
    condition Obtaining medical care if needed Reporting symptoms to health care staff Gathering information Keeping family members and friends up to date about the patient s condition Monitoring the number of visitors Maintaining a clean home environment after hospitalization Preparing food Providing transportation to and from the hospital for follow up care Knowing that your caregiver is well prepared for his her responsibilities may give you greater confidence Organizations exist that support caregiver needs and it may be worth the time to contact these groups Sharing unique concerns with other caregivers and receiving mutual support can help Check if caregiver discussion groups are offered at the transplant center This is a good place to voice concerns and get practical suggestions about caregiver responsibilities Caregivers won t want to burden the patient with additional problems and these groups may provide needed support for them Selecting A Caregiver The most important consideration in selecting a caregiver is to make sure that your primary caregiver is someone you feel comfortable with and is someone who cares deeply for you Other things you may wish to consider include whether or not the caregiver will feel comfortable in a hospital environment Most SCT units have

    Original URL path: http://www.nbmtlink.org/common_questions/questions_caregiver.htm (2015-03-26)
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  • Common Questions - National Bone Marrow Transplant Link
    be visited by a physical therapist Will you have access to a social worker or counselor during the transplant Can the hospital accommodate your dietary needs Can you ask for food at any time of the day or do you have to order it a day in advance Are you allowed to eat raw fruits and vegetables Having a flexible eating schedule can be helpful as you may be nauseated and may not want to eat during conventional mealtimes What is the average time that the nurses have worked in the BMT unit How experienced are the physicians at the center and are there specialists available to handle complications should they arise Is there a support group for patients or their families What is the survival rate for patients with your condition in your age group undergoing your type of transplant How does the staff feel about patients putting up Do Not Disturb or Please Knock signs on the door Could someone who has undergone a transplant at the center contact you to tell you about their experience What is the visitor policy How flexible is it Having your caregiver stay at the hospital overnight can be very comforting What living arrangements can be made for you and your family if you need to move away from your home to the transplant center What will the cost of the living expenses be Can the center provide any assistance to defray some of the family s expenses Does the center have a long term follow up clinic that is easily accessible and will respond to questions once you leave the transplant center This is particularly important if your oncologist in your area of residence has very little experience with transplants Individuals undergoing a transplant from an unrelated donor should also inquire

    Original URL path: http://www.nbmtlink.org/common_questions/questions_center.htm (2015-03-26)
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  • Common Questions - National Bone Marrow Transplant Link
    will reverse its position especially if there is a second reviewer or if you are undergoing this treatment as part of an approved clinical trial Be sure to comply with the time requirements Ask for the appeal in writing and send it certified mail with return receipt requested See if your doctor will supply medical information that supports the treatment and include it with the appeal If there is notice of an appeal and you cannot get a quick reversal continue to follow the appeal process At this point your doctor and transplant center should also be providing the insurer with scientific support information and include a listing of other institutions now providing this procedure Be persistent The paper trail between your transplant center and your health insurer may become very important if coverage is denied Organize your own paper trail file If your health insurance is paid through your employer ask if they can and will make efforts to help Sometimes the employer may pay for treatment rather than work with the insurer At other times the employer can put pressure on the insurer particularly if the employer spends a lot on health benefit coverage At some point it may be advisable to consult an attorney The attorney will require information to determine if the insurer is being discriminating in its policies It is possible in some areas that laws protecting disabled persons may apply The definition of who is disabled or handicapped could cover the patient in some cases Should you require the help of an attorney consult one who specializes in insurance denials Individuals at insurance companies generally want to assist you Case managers for example can be very helpful to patients Often medical directors who are physicians make the decisions about what would be the best care Approaching them as people who want to help is the best way to begin There are also government agencies at the federal level such as the Equal Employment Opportunity Commission and at the state level such as the Commission on Human Rights which are designed to help the average citizen These agencies are user friendly which means that you can personally go to the agency and speak to an investigator about your problem Sometimes they might even be willing to file suit for you Medicare and Medicaid If you are a Medicare or Medicaid patient contact the treatment center s social worker or patient financial services office to discuss your options They will work with you to help you understand what coverage is offered If you are denied coverage ask to be informed of your appeal rights You have the right to appeal the denial of a service that is medically necessary If you have Medicare make sure the transplant is conducted in a Medicare friendly facility Call 800 MEDICARE if you have questions about your coverage Financial Aid There are some places you can turn to for help with transplant expenses While there are no agencies or organizations

    Original URL path: http://www.nbmtlink.org/common_questions/questions_cost.htm (2015-03-26)
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  • Common Questions - National Bone Marrow Transplant Link
    in such a small number that the body s defense system will be able to destroy them Purging is done differently from center to center Some centers in fact don t do it at all If you have questions about these issues ask them Your doctor and other medical professionals should be able to get you the information that you need Allogeneic Transplants Related and unrelated allogeneic and syngeneic transplants are most commonly used in persons with diseases affecting bone marrow such as leukemia aplastic anemia and some lymphomas The idea is to replace unhealthy marrow with healthy marrow Sometimes a disease such as leukemia interferes with the stem cell growth causing cells to stop developing and or become defective Eventually these abnormal or immature cells enter the bloodstream causing serious illness A stem cell transplant provides healthy stem cells to patients whose marrow is diseased The transplant is actually the transfer of healthy stem cells from a donor to a recipient Types of Stem Cell Collection Bone Marrow Stem Cell Transplant Stem cells are collected from the patient s or donor s bone marrow Historically this has been the traditional transplant and requires general anesthesia in an operating room Stem cells are collected from the hip bone When stem cells are collected from the bone marrow a large needle is inserted into the back of the hipbone and marrow is withdrawn The hip bones in the pelvis are marrow rich bones Since this procedure is performed under anesthesia the donor doesn t feel anything during the marrow collection but may experience some discomfort in the back area for a few days afterward About 5 10 of the donor s marrow is withdrawn an amount that the body easily replenishes within just a few weeks This process is known as bone marrow retrieval sometimes referred to as a harvest and is done in an outpatient surgery center Peripheral Blood Stem Cell Transplant When stem cells are taken from the circulating blood the procedure is more like a blood donation The stem cells in the circulating blood are called peripheral blood stem cells PBSC Like the stem cells in the bone marrow they are able to divide and produce red cells white cells and platelets The concentration of peripheral blood stem cells in the blood however is very low In order to collect them medications known as colony stimulating factors or growth factors are given to the donor to stimulate the bone marrow to produce more stem cells which are then released into the blood stream The growth factors are administered as injections under the skin daily for a maximum of five days duration Once they are in the blood these stem cells are collected in one or more sessions normally taking four to six hours each Stem cell collections are performed as outpatient procedures Donors should plan to spend most of the day in the hospital on the day of collection In this procedure which is called apheresis the blood

    Original URL path: http://www.nbmtlink.org/common_questions/questions_type.htm (2015-03-26)
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  • Resource Guide for Bone Marrow/Stem Cell Transplant - Resources and Support - National Bone Marrow Transplant Link
    of the transplant process Highlighted are financial and insurance concerns physical and practical issues More than 60 000 patients families and health professionals have benefited from this remarkable booklet Use the right hand menu to view an online version of this guide Click here to download a PDF version of this guide 1038K 52pg In order to view download and or print documents that are in Adobe PDF format you

    Original URL path: http://www.nbmtlink.org/resources_support/rg/index.htm (2015-03-26)
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  • About Resource Guide for Bone Marrow/Stem Cell Transplant - National Bone Marrow Transplant Link
    care team is the best source of current medical information Over a decade ago there was an unmet need for information and support regarding stem cell transplant Because of this a dedicated group of SCT survivors family members friends and health professionals responded by writing the Bone Marrow Transplant Resource Guide Friends Helping Friends The booklet was very well received and has since been distributed to more than 50 000 people worldwide and to countless others via the Internet The overwhelming response to this publication led to the creation of the National Bone Marrow Transplant Link nbmtLINK in 1992 The nbmtLINK s outreach to patients and families continues to be dynamic but the focus remains steadfast to help patients as well as their caregivers families and the health care community meet the many challenges of stem cell transplant by providing vital information and support services We know that medical technology will continue to change the nature of stem cell transplant Much has been learned Much is yet to be discovered We encourage you to use this booklet as a guide to enhance the recommendations of your physician and health care team It is not a substitute for medical advice or

    Original URL path: http://www.nbmtlink.org/resources_support/rg/rg_history.htm (2015-03-26)
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  • History of bone marrow transplant treatment - National Bone Marrow Transplant Link
    stem cells When talking about a stem cell transplant one must consider both the source of the stem cells from the patient from a related donor from an unrelated donor and the way in which the cells are collected from the peripheral blood from the bone marrow space directly or from the placenta after delivery Using the latest research the health care team will make a recommendation about which stem cell source and which method of collection is most appropriate to the medical needs of the patient Throughout this publication we will be using the term stem cell transplant and its abbreviation SCT which includes bone marrow peripheral blood and cord blood transplant related or unrelated Physicians always caution against using the term miracle in connection with stem cell transplant It is as they remind us a modern medical procedure involving some risk It comes with no guarantee However few would deny that there has been tremendous progress in the field Examples include The acceptance by most insurance companies that SCT is a standard rather than experimental treatment for a number of diseases The result has been an increase in the number of insured patients The list of diseases and conditions with treatment potential from SCT has steadily increased Once considered a last resort for leukemia SCT is now successful for a number of illnesses and performed earlier in the course of the disease Thanks in part to media coverage of transplant patients and their stories stem cell transplant has received greater awareness and acceptance Due to this exposure donor registries throughout the world have increased their number of volunteers However increasing the number of donors on the registries is still a critical concern for minorities who identify themselves as Black or African Americans American Indians or Alaska Natives Asians Hawaiian or Other Pacific Islanders Hispanic or Latino or mixed race individuals The maximum age at which patients are considered for SCT has increased due to advances in the SCT field The use of reduced intensity chemotherapy radiation and medical supportive care allows older patients to better tolerate treatment This type of transplant is referred to as a nonmyeloablative SCT In addition patients who do not have a genetically matched sibling or an unrelated donor available can benefit from a treatment approach utilizing cord blood from unrelated donors as a source for stem cells Cord blood transplants were only offered to children in the past however recently conducted clinical trials have demonstrated the feasibility of using cord blood transplants as an option for adults The post transplant prognosis for patients has dramatically improved This is due in part to better medical supportive care including treatments for transplant related side effects such as graft versus host disease GVHD and infection Moreover the average hospitalization time for transplant has been substantially shortened The development of new drugs such as STI 571 also known as Gleevec may make it possible for individuals with chronic myelogenous leukemia to avoid undergoing a transplant altogether At

    Original URL path: http://www.nbmtlink.org/resources_support/rg/rg_intro.htm (2015-03-26)
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  • Bone Marrow Transplant Process - National Bone Marrow Transplant Link
    regarding donor searches If you have questions about any part of the donor search process speak to your doctor or transplant coordinator Don t be in the dark about the status of your search Two factors are important in locating a match The first is a test known as HLA human leukocyte antigen typing The antigen is a substance acting like a marker unique to you not unlike a set of fingerprints A simple blood test is all it takes to begin the process of HLA typing Most HLA typing today is performed using a DNA based method to match patients and donors DNA testing allows patients and donors to be more closely matched The goal is to find a match for at least six key antigens The ability to identify donors is improving and some transplant centers are trying to match even more antigens The second factor in finding a matched unrelated donor may be the amount of representation of your ethnic or racial group in the registries Because these antigen tissue types are inherited and some are unique to racial or ethnic backgrounds the greatest chance of locating a donor may come from the same group A lack of donors in your ethnic or racial group may make it more difficult to locate a match Ambitious efforts to increase the number of minority donors on the registries are underway You do not have to have the same blood type as your donor to be a suitable match If blood types are different the patient will become the donor s blood type after the transplant This is because the stem cells from a donor have been programmed to produce the donor s blood type and will continue to do that in their new environment A cord blood transplant may be a possibility if you meet specific criteria The use of cord blood is based on the size of the unit as the number of stem cells required is based on the patient s weight Some transplant centers are conducting research to combine multiple cord units for transplant in order to provide the necessary number of stem cells It is important to remember that it takes time to carry out a donor search Your transplant center manages the search and will inform you of the results If you ve been told there are potential unrelated donor matches for you more time is required to identify the best matched donor A formal search begins to narrow down candidates and generally takes several weeks or months a cord blood search usually takes less time If a donor is located willing and eligible then final evaluation begins If no suitable matches are found other strategies need to be discussed with your doctor Bone Marrow Stem Cell Transplant Stem cells are collected from the patient s or donor s bone marrow Historically this has been the traditional transplant and requires general anesthesia in an operating room Stem cells are collected from the hip bone When stem cells are collected from the bone marrow a large needle is inserted into the back of the hipbone and marrow is withdrawn The hip bones in the pelvis are marrow rich bones Since this procedure is performed under anesthesia the donor doesn t feel anything during the marrow collection but may experience some discomfort in the back area for a few days afterward About 5 10 of the donor s marrow is withdrawn an amount that the body easily replenishes within just a few weeks This process is known as bone marrow retrieval sometimes referred to as a harvest and is done in an outpatient surgery center Peripheral Blood Stem Cell Transplant When stem cells are taken from the circulating blood the procedure is more like a blood donation The stem cells in the circulating blood are called peripheral blood stem cells PBSC Like the stem cells in the bone marrow they are able to divide and produce red cells white cells and platelets The concentration of peripheral blood stem cells in the blood however is very low In order to collect them medications known as colony stimulating factors or growth factors are given to the donor to stimulate the bone marrow to produce more stem cells which are then released into the blood stream The growth factors are administered as injections under the skin daily for a maximum of five days duration Once they are in the blood these stem cells are collected in one or more sessions normally taking four to six hours each Stem cell collections are performed as outpatient procedures Donors should plan to spend most of the day in the hospital on the day of collection In this procedure which is called apheresis the blood circulates through a machine called a cell separator that removes the peripheral stem cells and returns the rest of the blood to the body The stem cells are then stored and frozen until the time of the transplant for autologous bone marrow transplants If the stem cells are collected from a related or unrelated donor they are given immediately Cord Blood Transplant Since the first cord blood transplant CBT in 1988 tremendous strides have been made in this field Generally CBT is not offered as a treatment option outside of clinical trials It is mainly offered to children or young adults who meet the criteria for enrollment in these clinical trials However recently conducted research trials have demonstrated suitability of cord blood transplants in a selected group of adult patients Since the number of stem cells required for transplant are based on body weight most CBT s are used with patients weighing less than 90 pounds To overcome this limitation some transplant centers are conducting clinical trials in which two different cord blood units are combined There are far reaching applications for the use of umbilical cord blood stem cells for transplant The advantages are many It can be frozen stored and readily available Cord blood also poses

    Original URL path: http://www.nbmtlink.org/resources_support/rg/rg_understand.htm (2015-03-26)
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