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  • Resources and Support - National Bone Marrow Transplant Link
    guide should not be construed as medical advice Consult with your physician regarding your medical decisions and treatment The listed resources are not intended to be endorsements This booklet was made possible by a generous educational grant from The Susan G Komen Breast Cancer Foundation Use the right hand menu to view an online version of this guide Click here to purchase a copy of this guide Cost 2 copy

    Original URL path: http://www.nbmtlink.org/resources_support/sc/index.htm (2015-03-27)
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  • Resources and Support - National Bone Marrow Transplant Link
    Bone Marrow Transplant Link Managing Editor Myra Jacobs M A CFRE National Bone Marrow Transplant Link Medical Reviewer Patricia Steele RN BSN MSN University of Michigan Resource Editor Rachael Perry Americorps VISTA Volunteer Advisors James Armitage M D University of Nebraska Mary Horowitz M D M S Medical College of Wisconsin Roy Baynes M D Karmanos Cancer Institute Roy Jones M D University of Colorado Jacqueline DeVos Peer Support Volunteer Elly C Kirschner M A National Association of Breast Cancer Organizations Stephen Forman M D City of Hope National Medical Center William Peters M D Ph D Karmanos Cancer Institute Linda Frame RN MS AOCN Susan G Komen Breast Cancer Foundation Kathy Reynolds RN CS Karmanos Cancer Institute Emil Frei III M D Dana Farber Cancer Institute Ginny Thompson CHES Susan G Komen Breast Cancer Foundation Lisa Gleicher Esq Cindy Van Pelt Peer Support Volunteer Reviewers Tracey Cavender ACSW Henry Ford Health System Claire Keller RN Karmanos Cancer Institute Linda Diaz ACSW Karmanos Cancer Institute Sandy Shobe Margaret Flowers RN Karmanos Cancer Institute Sam Silver M D Ph D University of Michigan Cancer Center Mary Jane Frey RN Detroit Medical Center Susan Slavin Esq Karen Imarisio Bloomfield Township Public Library

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  • Resources and Support - National Bone Marrow Transplant Link
    makes the way easier Underlined words may found in the Glossary You may be reading this booklet having experienced a recent breast cancer diagnosis The shock of this news may still be difficult and fresh Or you may be someone who has lived with breast cancer for years coping with an unexpected recurrence of the disease Your physician might have introduced the unfamiliar term stem cell transplant to you Or you may have read about it on your own How you view the prospect of a stem cell transplant may be influenced by factors such as your age general health marital status or financial circumstances For you and all other women in this situation there are questions that require answers And while your own point of entry in reading this booklet is important the information is meant to be relevant to every woman considering a stem cell transplant for breast cancer Who qualifies for this procedure Stem cell transplant is often suggested to women with advanced breast cancer that has spread to other areas metastatic disease Stem cell transplant is also recommended to some women with early breast cancer who are at high risk for relapse such as those with many positive lymph nodes under their arm axillary nodes and to some women with locally advanced cancer such as inflammatory breast cancer To learn more about stem cell transplant you must have some general understanding of bone marrow transplant BMT Nearly 100 years ago physicians began to experiment with bone marrow transplant It was only in the past 30 years that real advances were made Bone marrow is the spongy tissue found in the cavities of the body s bones It contains special cells called stem cells from which all blood cells are produced Each type of blood cell begins its life as a stem cell The stem cells divide and form the different cells that make up your blood and immune system These include White cells that fight infection leukocytes and form the basis of the immune system lymphocytes Red cells that carry oxygen erythrocytes Platelets that help blood clot You can see that any change in the function of the bone marrow would have powerful effects within the body BMT is used in some situations to replace bone marrow that no longer works normally Simply explained a BMT involves removing bone marrow cells from the bone with a needle and then giving it to a patient through a transfusion Once the new marrow cells enter the bloodstream they travel to the patient s bones and begin to reproduce Transplant procedures vary according to the disease being treated Diseases such as leukemia lymphoma multiple myeloma aplastic anemia and various blood disorders are often treated with BMT The steps involved in a BMT may differ slightly from one treatment center to another Highly trained medical staff from centers specializing in bone marrow transplant handle the procedure There are several types of BMTs They are categorized according to the source of

    Original URL path: http://www.nbmtlink.org/resources_support/sc/sc_intro.htm (2015-03-27)
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  • Resources and Support - National Bone Marrow Transplant Link
    through a machine that separates blood cells Stem cells are removed and the remainder of the blood cells are returned to you This outpatient process takes about two to four hours a day The process is repeated for about three days or until enough stem cells are collected Patients usually tolerate this procedure well During apheresis some patients report numbness or tingling in the fingers or toes hand or leg cramps dizziness chills or lightheadedness Each of these is easily corrected After this procedure is completed and enough stem cells are collected they are frozen and stored for future reinfusion The next step in the process is called conditioning or high dose chemotherapy Its purpose is to destroy cancer cells in the body more effectively than is possible with standard doses of chemotherapy Conditioning involves receiving a combination of chemotherapy in high doses and or radiation The general sequence of treatment will vary slightly from center to center At some hospitals the first few days of conditioning may be done as an outpatient At others you will be admitted to the hospital Generally taking 5 to 10 days conditioning is completed one or two days prior to the reinfusion returning of your stem cells These doses of chemotherapy are much higher than you have received before Your physician will discuss the drugs being administered You will rest for a day or so after the high dose chemotherapy When the drugs are gone from the body the stem cells will be returned Once again the central line or catheter is used The stem cells taken from you earlier and stored are made available They are thawed in a warm saline solution Slowly the cells are reinfused into your bloodstream You may develop a bad taste in your mouth during this time due to a preservative used in protecting the frozen cells Some patients report that it tastes similar to garlic or oysters Others report a metallic type taste Try sucking on a hard candy at this time Although you are not sedated during the reinfusion you may wish to rest or sleep during the procedure If you choose family or friends may stay with you during the reinfusion Medications are used to minimize side effects from the chemotherapy such as nausea vomiting and diarrhea You may expect to experience poor appetite hair loss and fatigue These side effects are temporary lasting from a few days to a few months see Short Term Side Effects Because the high dose chemotherapy dramatically lowers the blood count the risk of infection increases This is referred to as being immunocompromised The medical staff will watch you carefully They ll check for mouth sores sinus infections skin conditions coughs and urinary problems You ll be asked to report any unusual changes or fever Antibiotics are commonly needed to get you through this low immunity period You ll begin to feel better as your white blood cell count increases and returns to normal For many women having a stem cell transplant this is generally about nine or ten days About two weeks after the rescue platelet counts will also return to normal You can expect to have several outpatient clinic visits in the weeks following transplant Care During Transplant Increasingly the standard protocols for stem cell transplant using well established treatments are being combined with outpatient care You may receive part of your treatment in the hospital and part of it as an outpatient Extended hospital stays of 20 to 21 days once considered mandatory for transplant have been replaced by shorter stays of 8 to 9 days This allows you and your caregiver to move to nearby lodging more quickly Each day you ll return to the hospital for outpatient treatment Much of your transplant related care may now be done out of the hospital This living arrangement is more home like than the hospital You re given a greater sense of control and may feel less like a sick patient when returning to your apartment at the end of a day Wearing your own clothes instead of hospital gowns is a welcomed perk Some patients express concern about the risk of infection while out of the hospital There is no significantly greater risk of infection in the outpatient setting In fact it may actually be safer away from hospital organisms While you are an outpatient you will require a caregiver s 24 hours per day see Role of the Caregiver This is a big job However most friends or relatives are willing to assume this responsibility For some women there may be no one readily available to serve in this role When this is the case it may influence where and how post transplant care is given Sometimes full inpatient care may be the best option If your transplant center does not have a lodging facility nearby and you are still asked to consider outpatient treatment pose the following questions What happens when complications occur Is there access to a transplant physician 24 hours a day 7 days a week Are visiting nurses used for outpatient care Be concerned about the medical center s quality of care and the availability of all kinds of services when considering outpatient treatment Let this information determine where you have your transplant not whether or not it is done on an outpatient basis Continued Recovery Following Transplant The next phase is the transition to a more normal life It is time to return to your home You ll be feeling somewhat stronger Most women look forward to leaving the treatment center environment with joy and anticipation This happiness however may be mixed with a sense of fear and anxiety Sometimes the transition is not easy Things were taken care of for you at the hospital Responsibility for your care is gradually being given back As previous family demands will continue be prepared to delegate them to others see Role of the Caregiver You now will be expected to make

    Original URL path: http://www.nbmtlink.org/resources_support/sc/sc_understand.htm (2015-03-27)
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  • Resources and Support - National Bone Marrow Transplant Link
    This can be the single most important factor in predicting how well you will cope They will have the need to do things to help you Let them It will decrease their feelings of helplessness Have someone check up on the emotional well being of family members too A comment like how are you holding up should be directed toward caregivers often This kind of nurturing is good for you and for those who care for you Ask about services like BMT support groups and or breast cancer support groups Talk to social workers at the transplant center to discover what is available If you have computer skills check out the online BMT support groups see Resource Listing Speak with your clergy if this gives you additional support and strength Read books with positive affirmative messages Use diversions like soothing music or a new hobby If you are from a rural community or have chosen a transplant center far from home you may feel somewhat isolated You may have concerns surrounding childcare or other family issues Rely on the social work staff at the treatment center There are people to help you through this experience Understanding Feelings Given the dramatic nature of a stem cell transplant it is reasonable to expect emotional reactions and feelings to be greatly heightened It may help to identify some of the most common responses Fear and Anxiety You wouldn t be normal if you didn t experience some fear and anxiety regarding your stem cell transplant It can be scary Sometimes the fear goes beyond the transplant itself You may be anxious about how your family will cope time away from work or issues like inadequate insurance coverage Recognize when anxiety appears Signs would include the inability to sleep difficulty focusing at work or having trouble understanding what your physician tells you Talk about your fears with your physician family and friends Communicating how you feel may provide some relief Depression You may have bouts of feeling deeply sad and tearful A cancer diagnosis can naturally have that effect Depression occurs when there is a severe and enduring state of extreme sadness negative thinking and changes in eating or sleeping There is a tendency to become isolated and withdrawn from others This vicious cycle can lead to loneliness and greater depression If you have had a history of depression or have taken medication for nerves be sure to inform your doctor The episodes of feeling depressed can usually be worked through If you come to feel that others are very concerned about your deep sadness or that life is not worth living it s time to get help from a professional therapist Certain medications may also produce symptoms of depression Discuss this with your physician or transplant team Guilt If children or family members are left at home while you re having your stem cell transplant there may be additional worry and guilt It is natural that you be concerned about their well being

    Original URL path: http://www.nbmtlink.org/resources_support/sc/sc_coping.htm (2015-03-27)
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  • Resources and Support - National Bone Marrow Transplant Link
    Insurance companies generally want to help 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 way to begin If you receive a denial of coverage time is of the essence Many companies provide only a short period of time for an appeal You will need to appeal directly to the insurer before you will be permitted to file a lawsuit A denial must be in writing It should include information about how to appeal If it does not request that information in writing Don t panic A no at this stage may really mean either probably not or provide us with more information and we will reconsider There is almost always room for more discussion Although you may feel angry or hurt don t be disheartened There are ways to fight back Consider the reasons given for denial of coverage Does the insurance company consider the transplant to be experimental or investigative Is the denial based on a pre existing condition Is there some reason you are not entitled to certain benefits while others are Involve your physician and transplant center Often insurers will change their minds once provided with strong documentation from doctors If your insurance is paid for by an employer find out if the employer can and will make efforts to help Sometimes the employer may pay for the treatment rather than hassle 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 Most importantly do everything required by the insurer to submit an appeal Keep the time limits carefully in mind They may be as short as 30 days Successful strategies for appeal include the following Request that your physician intervene and send a detailed report medical articles scientific information and other materials that are responsive to the reasons for denial Keep careful records of the paper trail you have developed and do not be afraid to do your own research Contact the patient advocate office or a BMT social worker at your transplant center Ask your employer to assist you if your health coverage is through your employment or your spouse s employer Seek information from organizations serving bone marrow transplant patients Retain an attorney with expertise in this field to help you More and more women with breast cancer are finding success in these insurance disputes Do not give up see Resource Listing If you are underinsured or have no coverage for transplant expenses you may have to borrow funds or plan fund raising activities Family friends or your employer may offer help with these activities Contact the BMT social worker Request names of organizations that not only provide financial support but will help you plan strategies for raising funds see Resource Listing You may want to consider participation in a clinical trial as expenses are sometimes less Even if you

    Original URL path: http://www.nbmtlink.org/resources_support/sc/sc_considering.htm (2015-03-27)
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  • Resources and Support - National Bone Marrow Transplant Link
    Patient Advocacy Coalition 850 E Harvard Ave 465 Denver CO 80210 303 744 7667 http www patientadvocacy net Patient Advocate Foundation 780 Pilot House Dr 100C Newport News VA 23606 800 532 5274 or 757 873 6668 http www patientadvocate org Transportation Support Airlifeline 50 Fullerton Ct 200 Sacramento CA 95825 800 446 1231 http www airlifeline org Corporate Angel Network Inc Westchester County Airport 1 Loop Rd White Plains NY 10604 914 328 1313 http www corpangelnetwork org National Patient Air Transport Helpline 4620 Haygood Rd 8 Virginia Beach VA 23455 800 296 1217 http www mercymedical org Cancer Information on the Internet The Internet is a valuable tool for medical research It offers a wealth of information some helpful some misleading Evaluate Internet material by asking What is the source of this information Is it factual or opinion Is it based on someone s experience How current is this information Additional information may be found by using a search engine Search engines are powerful searching programs that are helpful in finding information anywhere on the Web Some of the popular ones are Yahoo http www yahoo com Infoseek http www infoseek com Alta Vista http www altavista com Begin searching with specific terms Use broader terms next For example specific terms would be stem cell transplant and breast cancer A broader term would be only breast cancer Using quotation marks will result in a more specific search but use the Help key to find out how to enter search terms correctly If you are not comfortable using a computer ask staff at the public library for assistance Breast Cancer Information Clearinghouse http www nysernet org CancerAnswers http canceranswers org CancerNet http cancernet nci nih gov Oncolink http oncolink upenn edu PDQ http cancernet nci nih gov pdq htm Clinical Trial Web Sites http www scitalk com http www nabco org trials http cancertrials nci nih gov http cancernet nci nih gov http www centerwatch com http www askcnet org Books Bone Marrow Transplant Resource Guide Friends Helping Friends National Bone Marrow Transplant Link 800 LINK BMT Breast Cancer The Complete Guide Yashar Hirshaut M D and Peter Pressman M D Full Catastrophe Living Using the Wisdom of Your Body and Mind to Face Stress Pain and Illness Jon Kabat Zinn Ph D Guide to Stress Reduction John Mason Ph D Heal Yourself A Step by Step Program for Better Health Through Imagery Martin Rossman M D Holding Tight Letting Go Living with Metastatic Breast Cancer Musa Mayer Hope is Contagious The Breast Cancer Treatment Survival Handbook Margit Esser Porter Love Judy Judy Hart Not Now I m Having a No Hair Day Humour and Healing for People with Cancer Christine Clifford The Race is Run One Step at a Time My Personal Struggle and Every Woman s Guide to Taking Charge of Breast Cancer Nancy Brinker Survivors Guide to a Bone Marrow Transplant What to Expect and How to Get Through It Keren Stronach 800 LINK BMT We

    Original URL path: http://www.nbmtlink.org/resources_support/sc/sc_resource.htm (2015-03-27)
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  • Resources and Support - National Bone Marrow Transplant Link
    have data from scientific studies comparing this treatment to standard therapies The new data come from five separate clinical trials Preliminary summaries were released April 15 1999 by the American Society of Clinical Oncologists For further information and statements by organizations such as the Susan G Komen Breast Cancer Foundation the American Society for Blood and Marrow Transplantation and Y Me go to the following National Cancer Institute Web site

    Original URL path: http://www.nbmtlink.org/resources_support/sc/sc_updates.htm (2015-03-27)
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