In this phase, you’ll make practical, physical, and emotional preparations for your transplant. This will be a very busy time for you and your family.
Here is a list of things that will happen and things that you will need to do during this phase. You can check off items as you go along:
- Meet your team — Meet your doctor and members of your healthcare team. Take this time to ask about your treatment and have them answer your questions.
- Learn about your transplant — Read this entire guide at least once, along with the additional information at the back.
- Make a list of questions — Make a note of anything that you don’t understand about your transplant, anything in the guide that isn’t clear, and any other questions you have.
- Choose a caregiver — Identify a family member or friend to act as your caregiver. Make sure this person understands what the role entails. Give your caregiver a copy of this guide and ask him or her to read it at least once.
- Get financial clearance — Meet with a representative from Patient Financial Services (PFS) and speak to your health insurance company. Check that your outpatient stem cell transplant and medications are covered.
- Make decisions about your fertility — If fertility is a concern for you, speak with your healthcare team about your options. Ask for an appointment with a fertility specialist to discuss how your treatment may affect your ability to have children in the future and steps you may be able to take to preserve your fertility.
- Speak to your children about your treatment — If you have children, talk to them about your treatment to help build trust and their sense of security.
- Arrange childcare — If you have children, they cannot stay with you at your NY Presbyterian Guest Facility or apartment during your outpatient transplant, so you should arrange for childcare.
- Arrange pet care — If you have pets, they cannot stay with you at your NY Presbyterian Guest Facility or apartment during your outpatient transplant, so you should make arrangements for them.
- Attend orientation — You and your caregiver will attend the virtual orientation for outpatient autologous stem cell transplant patients. Ask your clinical coordinator for details.
- Pretransplant evaluation — You’ll undergo a series of medical tests. Your clinical coordinator will schedule these tests with you.
- Lodging — Your clinical coordinator will make arrangements for you to stay at the NY Presbyterian Guest Facility or apartment and will give you details.
- Nutrition consultation — Meet with a dietitian to review special dietary requirements and safe food handling.
- Social work consultation — Meet with a social worker who will explain the psychological, emotional, and financial support services offered by the social work team.
- Mobilization —You will give yourself injections of a medication to increase the number of stem cells in your bloodstream.
- Harvesting — You will visit our Blood Donor Room, where your stem cells will be collected from your bloodstream.
- Have your catheter inserted — You will visit the Interventional Radiology department where a central venous catheter will be inserted into your upper chest wall.
- Learn catheter care — A nurse will show you and your caregiver how to care for your catheter and change your dressings.
- Make decisions about your hair — Think about whether you’d like to cut your hair. Visit a wig store if you decide to wear a wig.
- Prepare for clinic visits — Purchase a tote bag or rolling case to carry your supplies to the Outpatient BMT Clinic every day.
On or around Day −30, you’ll meet with your attending doctor and other members of your healthcare team. Your attending doctor will walk you through your treatment plan. This plan takes into account your disease, your overall health, and other factors. Your healthcare team will update your treatment plan as you undergo tests before your transplant.
One of the most important steps in preparing for your transplant is choosing your caregiver. This person is usually a family member or a close friend and will be an important part of your healthcare team. Your caregiver will be responsible for a lot of the day-to-day medical, practical, and emotional support you need during your outpatient transplant.
Your caregiver will receive specific instructions from your healthcare team about his or her responsibilities. Some of these responsibilities will include:
- Gathering information from your healthcare team
- Caring for your catheter
- Making sure you take your medications and keeping a written record of when you take them
- Taking your temperature every 4 hours while you are awake and away from the clinic. Keeping a written record of your temperatures
- Keeping a written record of how much liquid you drink every day
- Noticing any changes in your condition
- Telling your healthcare team about any new symptoms you may have or changes in your condition
- Calling for medical help in an emergency
Dealing with financial and insurance issues
Preparing your meals according to a low-microbial diet
Bringing you to and from the hospital
Maintaining a clean environment in your NY Presbyterian Guest Facility, apartment, or house
Keeping family members and friends up to date about your condition
Managing the number of visitors you have and keeping you away from anyone who is sick
Paying attention to your moods and feelings
Communicating with you and listening to you
Understanding your needs and your decisions
Choosing the right caregiver
Being a caregiver is a full-time, 24-hour, 7-day a week responsibility. It is tiring, demanding, and stressful—especially if your condition, schedule, or treatment changes.
While you’re undergoing your transplant, your caregiver may not be able to work and will need to stay with you for most of the day and night. (While you are in the Outpatient BMT Clinic, your caregiver can take some personal time. This is something we strongly recommend).
It is important for your caregiver to maintain a positive attitude, calm demeanor, and flexible approach while also providing you with the support and encouragement you need. It’s important for you to understand that the caregiver role is challenging and that your caregiver may at times feel overwhelmed by the responsibilities.
Take time now to think about who you would like to be your caregiver. It should be somebody you trust and who can take the time to care for you. Your caregiver should be someone who can offer you the practical and emotional support you need.
If there isn’t 1 single person who can act as your caregiver, then it may be possible for you to have different caregivers scheduled during different times. It is best to limit the number of caregivers to 1 or 2 individuals.
Resources for caregivers
We have included a link to a useful resource titled Caregivers’ Guide for Bone Marrow/Stem Cell Transplant at the end of this guide.
Early on in your journey with us, you will meet with a representative from MSKCC’s Patient Financial Services who will be your financial counselor. He or she will gather information about your treatment plan, contact your insurance company, and find out what aspects of your care are and are not covered. Your financial counselor will be available to answer questions about your medical expenses and bills throughout your treatment.
Stem cell transplants are complex and expensive. The administrative staff from Patient Financial Services will check that your pretransplant tests, high-dose chemotherapy, stem cell infusion, post-transplant care, housing, medications, and other expenses are covered by your insurance plan. If they are, then you will be “financially cleared” to begin treatment.
Before you become a transplant candidate, your overall physical condition needs to be evaluated. You will need to make several trips to MSKCC to undergo tests. We often refer to this as the “work-up” or “restaging” period. During the work-up, you will need to have some or all of the following tests:
- Chest x-ray — This is done to ensure your lungs are clear and there is no evidence of pneumonia or other problems.
- Blood tests — These are done to evaluate your kidney and liver function and to assess your white blood cells, hemoglobin level, and platelet counts. Your past exposure to certain viruses is also checked.
- Urine tests
- Electrocardiogram (EKG) or echocardiogram (ECG) — This is done to give your healthcare team information about your heart.
- Pulmonary function tests (PFTs) — These are breathing tests that measure your lung function.
- Computed tomography (CT) scan — This is an x-ray that provides images of soft tissue and bone. Some scans use contrast dye that you drink or have injected into your body. Tell your doctor if you have a known allergy to contrast dye, seafood, or iodine. If you have an allergy, you may need to be given medications to prevent a reaction to the dye before your scan.
- Dental exam — You must have a full dental exam before your transplant. Any cavities, loose fillings, or gum disease should be taken care of before your transplant. This can be done by your own dentist or by our dentist here at MSKCC. If you see your own dentist, please ask him or her to provide a note saying that you have no dental problems. If there are issues, please ask your dentist to contact the MSKCC dentist.
- Positron emission tomography (PET) scan — This is a scan that is used to look at your organs and the way they function in your body.
- Bone marrow aspiration and biopsy — A bone marrow aspirate is a small sample of bone marrow, usually taken from the back of your hip. Your hip will be numbed, a needle will be inserted into the bone marrow, and a small amount of bone marrow liquid will be taken out. A bone marrow biopsy will be performed at the same time. This biopsy involves collecting a tiny piece of bone for examination. This is done to evaluate how well your bone marrow is producing cells and to check for any sign of cancer in the marrow.
- Skeletal survey — This is an x-ray of the major bones in your body that is done to check for any signs of disease. This can take a few hours to complete.
These tests are usually done in the 30 days before your transplant (Day −30 onwards), but sometimes the pretransplant evaluation can take longer. Your clinical coordinator will work with you and your caregiver to schedule the tests.
The results of the tests will be used to plan your treatment, adjust it to your specific needs, and make sure that it is safe to start your treatment.
Your doctor or nurse will explain any other tests that you may need.
Your cancer treatment will affect your fertility. It is likely that you will not be able to conceive a child naturally after high-dose chemotherapy.
In some cases, it’s possible to take steps to preserve your fertility before you start treatment. Women can freeze eggs or embryos and men can bank sperm. These steps may allow you to have a biological child in the future. If you have received chemotherapy in the past, there is a risk that your sperm or eggs have already been damaged, so preserving your fertility may not be an option.
We have summarized the most common steps that people take to preserve their fertility before undergoing a stem cell transplant. If you want to learn more about fertility preservation options and other ways you may build a family after your transplant, ask your doctor or nurse for a referral to a fertility expert.
Options for men
Men can freeze sperm before treatment. The first step is to schedule an appointment at a sperm bank, where you will masturbate and collect your ejaculated semen in a sterile cup.
The sperm bank will analyze the specimen to be sure there are healthy sperm to freeze. The semen is then placed in vials and frozen. It can be stored for as long as you want, even for many years. We recommend that men collect 3 separate specimens if possible, abstaining from sex for 2 to 5 days before the first collection and in between the other collections.
For more information, please read the resource titled Sperm Banking and Cancer and Fertility: Information for Men included at the back of this guide. These are also available online:
Options for women
Women can freeze eggs or embryos before treatment. The first step is to schedule an appointment with a reproductive endocrinologist (a gynecologist with special training in fertility). Ask your doctor or a member of your healthcare team to refer you to a reproductive endocrinologist.
Your reproductive endocrinologist will evaluate your fertility and give you advice on how best to proceed.
If these tests show that your eggs can be collected successfully, on or around the second day of your period, you will start giving yourself daily hormone injections. The hormones will stimulate some of the eggs in your ovaries to mature. You will need to take the injections for about 10 days, during which time you will be closely monitored by your reproductive endocrinologist. Once the eggs are fully mature, you will be scheduled for the egg retrieval. This is an outpatient procedure done using anesthesia, so you will be asleep. Your eggs will be collected using a very thin needle passed through the wall of your vagina.
If you are going to store embryos, your eggs will be fertilized with sperm in the laboratory before freezing. This is called in vitro fertilization (IVF). If you are going to store eggs, they will not be fertilized with sperm before freezing. The frozen eggs or embryos can be stored for as long as you want, even for many years.
Another possible option to preserve fertility is ovarian tissue freezing. However, this procedure is experimental.
For more information, please read the information titled Cancer and Fertility: Information for Women and Selecting a Reproductive Endocrinologist included at the back of this guide. They are also available online:
Financial issues related to fertility preservation
Unfortunately, fertility preservation is not covered by most insurance plans. Sperm banking can cost about $1,000 and egg or embryo freezing can cost $10,000 to $15,000. There are also annual storage fees.
The financial staff at the sperm bank and your reproductive endocrinologist will contact your insurance company to determine if you have coverage.
There are financial assistance programs available, such as Fertile Hope, a discount program for eligible patients managed by LiveSTRONG. For more information about this, ask your nurse or a member of your healthcare team for an application or go to the Fertile Hope Website at: http://www.fertilehope.org/
Being open with your children helps to build trust and a sense of security. During your transplant, your children will not be able to stay with you at your NY Presbyterian Guest Facility or apartment. This can be upsetting for parents and children, so clear communication is recommended. When speaking to your children about your illness and transplant, we recommend that you:
- Always take into consideration your child’s age, developmental stage, and individual personality.
- Use the proper names and terms (“bump” or “boo boo” are confusing) when describing your diagnosis and transplant. Prepare your child for changes in your appearance, energy level, and daily routine (e.g., not going to work and having multiple medical appointments).
- Be cautious about promising that you will be home by an exact date, as discharges can be delayed for a number of reasons.
- Invite your child to ask any and all questions. Remember, it is okay not to have all the answers.
- Validate and accept your child’s feelings.
- Reassure your child that he or she is not responsible for your illness and that cancer is not contagious.
- Set aside family time in which the transplant is not the only focus.
Your children won’t be able to stay with you during your outpatient transplant. Before you move into the local apartment or NY Presbyterian Guest Facility and undergo your transplant, you will need to make arrangements for childcare. We recommend that you:
- Identify family members or friends who know your children well enough to care for them during the transplant period.
- Maintain your child’s daily routine as much as possible.
- Prepare your child for these changes and help him or her adjust to the transition.
- Expect that your child may have some reactions or may show normal signs of adjustment during the transition.
- Engage your children’s teachers, counselors, clergy, and other adults involved in their life to support them during this time.
- Educate your child’s caregiver about the transplant process in case your child has questions during the separation.
Later in this guide, we suggest ways for you to maintain a strong connection to your children while you are living at the NY Presbyterian Guest Facility or apartment. You'll find it under “Coping With Separation From Children.”
For more assistance related to childcare, contact your social worker.
Animals can carry diseases and may present risks to you while your immune system is compromised. During your transplant period (chemotherapy through recovery), you should minimize direct contact with animals. Your pets won’t be able to stay with you at the NY Presbyterian Guest Facility or apartment, so you should arrange for them to be cared for while you are away from home.
You should also take the following precautions:
- Make sure that your pet is up to date with immunizations and any booster shots. Have your veterinarian check your pet’s stool for parasites.
- Have your pet treated for fleas. If your pet walks through wooded areas, have it screened for ticks.
- If you do come into contact with your pets, do not allow them to sleep with you. Do not allow your pets to lick you in the face.
- Wash your hands after touching your pet.
- Protect yourself from bites or scratches.
- Do not clean cat litter boxes or clean up after your dog in the street. Have someone else do these things for you.
- Avoid all contact with birds, lizards, snakes, turtles, iguanas, exotic pets, hamsters, or other rodents while you recover. Contact with bird or reptile waste may expose you to certain infectious germs.
After you have recovered from your transplant, you will be given additional instructions on pet care in the resource titled Returning Home After Your Autologous Transplant included at the back of this guide.
During your outpatient transplant, lodging will be provided for you and your caregiver at the NY Presbyterian Guest Facility at the Helmsley Medical Tower. A staff member from Patient Financial Services will make the reservation for you.
The Helmsley Medical Tower is located at 1320 York Avenue, just two blocks from MSKCC. On the upper east side of Manhattan, this neighborhood offers a wide range of restaurants, pharmacies, dry cleaners, grocery stores, and specialty shops. The NY Presbyterian Guest Facility is designed to meet your unique needs by providing comfort and convenience, along with many amenities.
You will be staying in a fully furnished suite. Each kitchen is equipped with a standard-size refrigerator and stove, a coffeemaker, a microwave oven, and a supply of cookware and dinnerware. The coordinated furnishings include a dining table with chairs and cable television. The size of the suite is based on availability at the time of your outpatient transplant. You can check in to your suite anytime after 3:00 pm on your reservation day.
During your stay at the NY Presbyterian Guest Facility, you will enjoy special amenities, including:
- 24 hour concierge/doorman service
- Daily maid service
- High-speed internet access
- Free copy of USA Today delivered daily
- Cable television in all rooms, including HBO
- Electronic key card access to each room
For additional information on the NY Presbyterian Guest Facility, please visit: http://www.nyphhousing.com/Hospitality/hospitality.html
MSKCC will pay for your room charges only. When you check in, you will be asked to provide your credit card just in case you incur other charges, as described below:
- Parking is a separate charge. The rate is approximately $45 per day; however, NY Presbyterian Guest Facility guests are given a $10 per day discount. Parking is in an underground garage with an entrance on East 70th Street.
- A gym pass is available for $10.00 per day for your caregiver only.
- Copier and fax machines are available for a fee per page.
- Laundry facilities are available; you can purchase a key card to use washers and dryers in the building.
In an autologous transplant, your stem cells are first mobilized and then harvested (“collected”) from your body before you receive chemotherapy.
Mobilization is the process of increasing the number of stem cells produced by your bone marrow and released into your bloodstream.
Stem cell harvesting is the process of collecting and separating whole blood into its major components (red blood cells, white blood cells, platelets, and plasma) then removing stem cells from the white blood cell component.
Once your stem cells have been harvested, they are frozen and stored, then infused into your body after your chemotherapy; this is your stem cell transplant.
Normally, your stem cells live in your bone marrow, where they are difficult to access and collect for transplantation (although a few circulate in your bloodstream).
To increase the amount of stem cells in your bloodstream, you’ll be given injections of a medication called granulocyte colony-stimulating factor (GCSF). GCSF stimulates your body to make more stem cells than usual and encourages the stem cells to move into your bloodstream, where they can be collected much more easily. This process is called mobilization. GCSF drugs include filgrastim (Neupogen®), pegfilgrastim (Neulasta®), and plerixafor (Mozobil®).
In most cases, GCSF injections are self-administered, meaning that you will inject yourself with the medication at home. You’ll be given GCSF in prefilled syringes, which you’ll keep in your refrigerator. Your clinical coordinator will create a mobilization calendar for you that will tell you when to give yourself the injections. The number of injections you will need depends on several factors, including your weight.
A full guide to giving yourself GCSF injections called Directions for Giving an Injection Below the Skin with Neupogen® (Filgrastim) or Neulasta® (pegfilgrastim) in a Pre-Filled Syringe is included at the back of this guide. Your nurse will go over this information with you as well.
Some patients will not give themselves injections, but will instead be given a different type of GCSF called plerixafor. If plerixafor is recommended for you, the injections will be given by a nurse in the BMT clinic.
A patient undergoing stem cell harvesting. Blood is withdrawn through an IV line in one arm and circulated through the machine, where stem cells are collected. The rest of the blood is returned through an IV line in the other arm.
Harvesting your stem cells
The GCSF injections will stimulate the growth and mobilization of your stem cells, and then they will be harvested. Harvesting is the procedure used to collect some of these stem cells in your blood.
Before you are scheduled for stem cell harvesting, a nurse or doctor will examine your veins to see if they are healthy enough for the procedure. If your veins are not healthy enough, you will have a catheter inserted, which will be used during harvesting to collect the stem cells. The catheter will remain in place for several weeks or months.
The harvesting procedure is done in the Blood Donor Room. You will have 3 to 5 harvesting sessions to collect enough cells. The exact number of sessions is determined by the number of stem cells that are collected in each session. You will be notified each day if you need to return for another harvesting session. Each session will last 3 to 4 hours.
You should eat dairy products and other foods that are rich in calcium the night before and the morning of your harvesting session. Wear comfortable clothes.
During the procedure, you will be lying in a bed or sitting in a reclining chair. You will be connected to a machine either by IV tubes in your arms or by your catheter. Blood will be withdrawn through the IV line or catheter and circulated through a machine that collects your stem cells. The rest of your blood will be returned to you.
If you wish, you can watch TV or read during your procedure. A family member or friend may sit with you. Since patients sometimes complain of feeling cold during the procedure, blankets will be available.
A patient undergoing stem cell harvesting using a catheter instead of IV lines. Blood is withdrawn from the catheter and circulated through a machine that collects the stem cells. The rest of the blood is returned through the catheter.
After your harvesting procedure is done, a dressing will be applied to your arm to prevent bleeding. It should remain in place for at least 3 hours, but not more than
5 hours. If your catheter was used, it will be flushed and recapped.
Your stem cells will be brought to our stem cell laboratory, where they’ll be frozen and stored safely until your transplant day.
After harvesting, most patients have minimal side effects and can resume their regular activities. The most common side effects are:
- Low platelet count or low red blood cell count. Either may require a transfusion
- Numbness or tingling in your lips, hands, or feet caused by a temporary decrease in the calcium levels in your blood
Call your doctor if you:
- Develop a temperature of 100.4°F (38°C) or higher
- Develop flu-like symptoms
- Notice any redness, bleeding, drainage, or pain at your catheter or needle insertion site
- Notice any bleeding or bruising
- Notice numbness or tingling in your lips, hands, or feet
- Notice significant pain on the left side of your body
Prior to starting your conditioning treatment, you and your caregiver will come to MSKCC’s Interventional Radiology department at the main hospital to have a central venous catheter inserted into your upper chest wall.
A central venous catheter is a tube that is inserted into a large vein near your collarbone. On the outside of your body, the catheter divides into 2 or 3 smaller tubes called lumens.
A central venous catheter allows your healthcare team to give you liquids, electrolytes, blood transfusions, and chemotherapy and other medications without having to keep sticking you with a needle. Having a catheter will make your treatment much more comfortable.
The catheter will stay in your body throughout your treatment and is usually removed 2 to 3 weeks after you receive your stem cell transplant.
Before your catheter is inserted
Your clinical coordinator will work with you to schedule the procedure to insert your catheter.
The day your catheter is inserted
Your catheter will be inserted at MSKCC’s main hospital. You will most likely already be staying in a NY Presbyterian Guest Facility or apartment within walking distance of MSKCC’s main hospital; if you’re not, you should arrange transportation between your lodging and the hospital.
You should report to the Surgical Day Hospital (SDH) several hours before your procedure is scheduled to take place. This will allow your medical team to evaluate you and make sure everything is in order before they insert your catheter.
Enter the hospital through the main entrance at 1275 York Avenue. Take the
M elevators at the top of the escalator to the 2nd floor. Enter through the glass double doors to the SDH. Check in at the desk. Please arrive on time.
The placement of your catheter should take about 30 minutes. First, an IV line will be inserted, and you will be given medication through the line to make you sleepy. Your blood pressure, heart rate, breathing, and oxygen levels will be monitored during your procedure.
A small area near your collarbone will be numbed with a local anesthetic. Depending on the type of catheter recommended for you, either 1 or 2 small incisions (surgical cuts) will be made near your collarbone. The catheter will be inserted through the incision(s) and threaded into the vein.
Once your catheter has been inserted into your chest, the incision(s) near it will be stitched closed. Your body will absorb your stitches. They will not need to be removed. Your catheter will be stitched to your skin at the point where it exits your body so that it will stay in position.
A small area near your collarbone will be numbed. One or 2 small incisions will be made and your catheter will be inserted. Once the catheter has been inserted, it will exit your chest wall and split into a number of lumens—tubes that allow your medical team to access your blood, give you fluids, infusions, etc.
After your catheter has been inserted
After your catheter has been inserted, you will be monitored in the SDH for 2 to 3 hours before being allowed to return to your NY Presbyterian Guest Facility or apartment.
You will need to leave the dressing(s) covering the incision(s) near your collarbone in place and dry for 24 hours. After 2 days, you can remove these dressing(s) and leave the incision(s) open to the air. The strips of adhesive tape that cover the incisions should be left in place until they start to peel off. This should happen about 3 to 5 days after your procedure.
The point where the catheter exits your body (exit site) will still need to be covered with a dressing. The stitch at this site will keep your catheter in place until the cuff becomes fully anchored.
If you have discomfort at your incision sites or along the tunnel, ask your nurse for medication to relieve your pain.
Taking care of your catheter
Taking good care of your catheter is important. When you visit the Outpatient BMT clinic each day, your nurse will change your dressing and caps on the lumens and flush your catheter as needed. When you are in your NY Presbyterian Guest Facility, apartment, or home (and anywhere else away from the BMT clinic) you and your caregiver are responsible for caring for your catheter.
A nurse will teach you how to care for your catheter. You will learn how to change the dressing while making sure that it remains free from germs; this is known as “sterile technique.” Using sterile technique will decrease your risk of infection. Your caregiver will learn how to change your dressing with you. For more information on how to care for your central venous catheter, please read the resource Caring for Your Central Venous Catheter, which is included at the back of this guide.
Your nurse will also give you supplies, including dressing change kits, gauze pads, tape, clamps, and other essentials.
Your catheter should not interfere with your day-to-day activities as you get ready for your transplant, but you should avoid strenuous activities and contact sports.
Problems with your catheter
You and your caregiver should be on the lookout for any problems with your catheter. Infection is the most serious complication to watch out for. Look at your catheter site daily. Notify your doctor, NP, PA, or nurse if you experience any of the following:
- Redness, swelling, or drainage (a liquid that can vary in color but may be clear, bloody, or green/yellowish) at your exit site
- Pain or tenderness at your exit site
- A temperature of 100.4°F (38°C) or higher
- Flu-like symptoms or chills
Other complications may be related to the catheter itself. Notify your doctor, NP, PA, or nurse if you experience any of the following:
- A hole, break, or leak in the catheter
- Swelling in your face, neck, or arm, on the same side of your body as your catheter
Clamping the catheter above a leak.
If your catheter is leaking at any time, clamp it above the leak. Use the white catheter clamp on the catheter, if possible. If the white clamp is not available, use the clamp found in the emergency kit. Wipe the area that is leaking with an alcohol pad and then cover the site with tape. Follow the instructions in your Emergency Guide for BMT Outpatients (included at the back of this guide). If it is between 8:00 am and 8:00 pm, call the BMT Outpatient Clinic. If it is after 8:00 pm, call your attending physician or go directly to the Urgent Care Center.
You can find detailed instructions on how to care for your catheter in Caring for Your Central Venous Catheter, which is included at the back of this guide. You should read it in full and refer to it when you are changing your dressings and catheter caps and flushing your catheter.
There are 2 main activities in this phase of your journey. You’ll receive your high-dose chemotherapy. On Day 0, your stem cells will be taken from storage and infused back into your body through your catheter.
Here is a list of things that will happen during this phase. You can check off items as you go along:
- Outpatient BMT Clinic — You’ll start making daily visits to the Outpatient BMT Clinic.
- Conditioning regimen —You’ll receive high-dose chemotherapy to kill your cancer. The chemotherapy will also kill the cells in your blood and damage your immune system.
- Learn about side effects — The side effects of chemotherapy are significant. Take time to learn about the side effects you’ll experience by reading this entire guide along with accompanying information.
- Monitor temperature and liquid intake — Your caregiver will take your temperature every 4 hours and monitor how much liquid you drink. Your caregiver will record this information in a diary. Your healthcare team will check this information when you and your caregiver come to the clinic.
- Learn about sexuality and transplantation — Learn about the impact that treatment and transplantation can have on your sexuality.
- Rest day (Day −1) — You’ll come to the clinic for an evaluation.
- Transplantation (Day 0) — You’ll come to the clinic. Your stem cells will be taken from storage and thawed. They will then be infused into your body through your catheter. This is your transplant.
We cover each of these activities in detail later in this section.
While you are being cared for on an outpatient basis, you will receive all your care, including your chemotherapy, transplant, and post-transplant care, at the Outpatient BMT Clinic. The clinic is located on the 4th floor of the main hospital. You’ll make daily visits to the clinic and will only be admitted to the inpatient BMT unit if you need more care than can be provided to you in the outpatient clinic.
In the morning when you come to the clinic, you should wear comfortable clothing that allows for easy access to your catheter (e.g., shirts that open at the front, sweatshirts, or large t-shirts). Avoid wearing clothing that is too difficult to take off or put back on.
You should bring these items to the clinic with you each day:
- A list of all prescription and nonprescription medications you are taking, along with dosages and frequency. This should include patches, creams, vitamins, nutritional supplements, herbal products, and over-the-counter medications
- All the prescription medications you were instructed to take during the bone marrow transplant period
- Your temperature and oral intake diary. Your caregiver will use this to keep track of your temperature and liquid intake while you’re away from the clinic. This will be explained later
- Books, newspapers, an audio player, a laptop, or tablet computer—whatever you need to pass the time
- A notebook to write down key pieces of information and any questions you or your caregiver may have
You should arrive at the clinic at your scheduled time. Once you arrive, you’ll check in with the session assistant and then you’ll be brought to a private room. Your room will have a bed and bathroom. There is a bedside entertainment unit with a TV and a computer. A light breakfast and lunch will be provided for you.
Your NP or PA will come to your room and will sit with you and your caregiver. Your NP will ask you a series of questions about how you are feeling and will do a physical exam. Your nurse or a patient care technician will check your vital signs and weight. Your NP or PA will check your temperature and oral intake diary; the diary is explained later in this guide.
Each day, some of your blood will be taken and sent for testing. Your blood will be checked to see how your white blood cells, red blood cells, and platelets are recovering. Your blood will also be used to check the health of your kidneys, measure your electrolyte levels, and identify any signs of infection, such as the presence of harmful bacteria or viruses.
Once you’ve been examined, you will wait in your room in the clinic for your test results to return. This can take several hours. This is a good time for your caregiver to take a break; he or she can take some personal time or run errands. You will be safe in the care of your healthcare team. We highly recommend that caregivers leave the hospital and take this time to unwind.
After several hours, your test results (sometimes referred to as “labs”) will come back from the lab. Your healthcare team will analyze the results and will make decisions about your care. The rest of your visit to the clinic that day will depend on your test results.
Here are some things that can happen based on your test results:
- You could be given IV fluids to hydrate you.
- You could be given an infusion of platelets, red blood cells, or other blood components.
- Your medication could be changed.
- Your treatment could be left as is.
All of this will be explained to you. You’ll remain in the clinic until all necessary treatments are completed and then you’ll be free to leave. You’ll return to your apartment or NY Presbyterian Guest Facility, where your caregiver will continue to monitor your temperature and liquid intake.
The conditioning regimen is another name for the high-dose chemotherapy that you will receive before your transplant. The regimen you will receive depends on your disease, previous treatments, and your treatment plan.
The conditioning regimen starts on a negative numbered day. Depending on your treatment plan, you may have 1 or multiple days of chemotherapy. Your stem cell transplant always takes place on Day 0. Remember that every day after your transplant is referred to as a positive numbered day (e.g., Day +1, Day +2, etc.).
Day −14 to Day −2
Conditioning regimen (chemotherapy)
Stem cell infusion
Your clinical coordinator will work with you to plan your schedule and will provide you with a treatment calendar. He or she will tell you the date and time of your treatment.
On the morning of your chemotherapy treatment, you and your caregiver will make the first of your regular visits to the Outpatient BMT Clinic.
Once you have checked in and been evaluated by your NP or PA, you will meet with your clinical pharmacist. Your pharmacist will explain the medications you will take throughout your treatment and will show you how to use your pill box. Your pharmacist will give you all the medications that you will need to take, along with a list that tells you when to take each different medication.
Once you have been evaluated and your pharmacist has spoken to you about your medications, you’ll receive your chemotherapy.
Before you receive your chemotherapy, a number of safety checks will be done to make sure everything is correct. Once all the safety checks have been completed, your nurse will give you IV fluids (to keep you hydrated), antinausea medication, and the chemotherapy medication through your catheter.
A patient receiving chemotherapy through a catheter.
During your visit on the day you receive chemotherapy, your healthcare team will use this time to talk to you about the rest of your transplant journey.
Your healthcare team will make sure that the logistics of the next few days are clear, including what happens on transplant day and what happens after your transplant.
They will talk to you about the side effects you’ll start to experience after your chemotherapy. You’ll be given printed materials that explain these side effects in detail and you’ll be shown what to do if you need to get help while you are in your apartment or NY Presbyterian Guest Facility.
From the time you start receiving your chemotherapy, your caregiver must take your temperature every 4 hours while you are away from the Outpatient BMT Clinic and monitor all of the liquids you drink. Your caregiver will write this information in the Temperature and Oral Intake Diary. A sample page from the diary is included at the back of this guide.
Your nurse will give your caregiver a thermometer and will show him or her how to use it. Your nurse will show both of you how to use the diary.
If your temperature is 100.4°F (38°C) or higher, your caregiver needs to follow the instructions in your BMT Emergency Guide. If it is between 8:00 am and 8:00 pm, call the Outpatient BMT Clinic at (212) 639-2399. If it is after 8:00 pm call (212) 639-2000 and ask for the doctor covering bone marrow transplant.
You should drink 2 liters or 64 fluid ounces of liquids each day. Try to drink steadily throughout the day—little and often.
Your caregiver should bring the diary to the clinic each day. Your NP or PA will review the diary with you and your caregiver each day at the clinic.
The day between your chemotherapy and your transplant day is a rest day. This rest day allows the chemotherapy medication to work and then leave your body. When you receive your stem cells, there will be no trace of the chemotherapy medication in your body, so the transplanted stem cells will not be harmed.
On the rest day, you will come to the Outpatient BMT Clinic as usual, where you will be evaluated. Your healthcare team will also use the rest day to speak with you about your stem cell infusion, communicate important information, and teach you and your caregiver useful skills.
Now that you’ve received chemotherapy to kill the cancer cells in your body, it’s time for your stem cell infusion—your transplant.
On Day 0, the stem cells that were separated from your blood and frozen earlier will be reinfused into your body. These stem cells will give you back your ability to make new blood cells and fight infections.
The morning before your transplant
On the morning of Day 0, your transplant day, you and your caregiver should come to the Outpatient BMT Clinic as usual, at your scheduled time. Give yourself extra time to get to the clinic, as you may feel tired after your chemotherapy.
Your stem cell infusion
Before the stem cell infusion, your frozen stem cells will be removed from storage in the stem cell laboratory and brought to your room. The stem cells are stored in clear plastic bags that look like bags of blood. The bags will be placed in a warm water bath to thaw.
You will be given medications about 30 minutes before your transplant to help reduce any side effects that you may experience during the infusion.
Once the stem cells are thawed, your NP, PA, or doctor will infuse the stem cells into your body through your catheter. You will be closely monitored and your vital signs will be checked frequently during and after the infusion.
You may experience some side effects during and after your infusion. The common side effects are nausea, vomiting, a tickle in your throat, or a cough. Other side effects that can occur include low blood pressure, chills, and fever.
It’s important that you communicate with your healthcare team and with your caregiver during your transplant. Let your healthcare team know how you’re feeling and tell them if you experience any side effects. If you do experience side effects, your healthcare team will treat your symptoms.
During and after your transplant, you may notice a strong, garlic-like taste in your mouth. Your urine, sweat, and skin may also have a garlic-like smell. You may not notice the smell but those around you will. This smell is caused by the preservative used to store your stem cells and will gradually go away over 1 to 2 days. The Nutrition Department will give you lemons to cut up and use as safe, natural air fresheners.
Your urine may appear bloody for 24 hours after your stem cells are infused into your body. This is your body’s way of getting rid of the byproducts of the stem cells that are not needed.
After your stem cells are infused through your catheter, you will remain in your hospital room for 4 to 6 hours for observation. After that, you will be allowed to return home to your NY Presbyterian Guest Facility or apartment to rest.
Now that you’ve had your transplant, you will enter a period of watching and waiting for your stem cells to begin producing new blood cells, a process called engraftment.
As engraftment occurs, the number of white blood cells, red blood cells, and platelets in your blood will return to normal. The amount of these cells, called your “counts,” will be monitored daily. You will remain in a nearby apartment or NY Presbyterian Guest Facility and will return to the outpatient clinic each day to have your progress evaluated and to have adjustments made to your treatment.
Here is a list of things that will happen during this phase. You can check off items as you go along:
- Learn about chemotherapy side effects — You may experience side effects associated with your treatment and transplant. We’ve compiled a list of these side effects. Read this information and make a note of any questions you or your caregiver have.
- Return to the Outpatient BMT Clinic — You will make daily visits to the clinic until your healthcare team tells you that you can come less often.
- Testing — You will undergo blood tests and other tests as needed to monitor your progress. You will have blood drawn each time you return to the clinic.
- Neutropenia — The low number of white blood cells in your blood will leave you vulnerable to infection, so you will need to take precautions to avoid any sources of infection.
- Low-microbial diet — Because you are neutropenic, you will eat a diet that contains a low number of potentially harmful microbes.
- Low platelet count — The low number of platelets in your bloodstream will make you vulnerable to bruising and bleeding. You will need to take care to avoid causes of bleeding.
- Low red blood cell count — You will experience fatigue.
- Transfusions — You may need to receive a blood transfusion to boost the numbers of red blood cells and platelets in your bloodstream.
- Personal care — Because you are neutropenic and have a low platelet count, you will need to take special care when you bathe, shower, and brush your teeth.
- Changes to Sexual Activity — Learn how to be sexually active in a safe way after your transplant.
- Learn about engraftment — The stem cells that have been reinfused into your body will find their way to your bone marrow and begin to make new blood cells. This is called engraftment. You should read about this process and write down any questions you have.
- Recovery of your counts — Over time, as your stem cells engraft and begin to produce new blood cells, your counts will improve.
- Exercise — You will try to remain physically active after your transplant by limiting the amount of time you spend in bed and walking a little each day.
We will cover each of these topics in detail later in this section.
After your transplant, you will receive all your care in the Outpatient BMT Clinic—the same place where you had your chemotherapy and your transplant. Each morning, you will return to the clinic, just like you did on the mornings before chemotherapy and your transplant.
Chemotherapy will kill the cancerous cells in your body and will prepare your bone marrow to receive your transplant. However, the side effects associated with chemotherapy are not to be taken lightly. These side effects may include the loss of your ability to fight infections, infertility, hair loss, fatigue, nausea and vomiting, mouth sores, or mouth tenderness.
Your healthcare team will help you understand and prepare for these side effects. Before you receive your chemotherapy, make a list of questions that you would like to ask about these side effects. Talk through these questions with your caregiver and your healthcare team.
Low white blood cell count (neutropenia)
Your chemotherapy will severely damage your ability to fight infections and heal. It’s important that you understand why this happens, how to watch for danger signs, and how to avoid infections and injuries.
One side effect of chemotherapy is called neutropenia. Neutropenia is a condition in which you have a lower than normal number of neutrophils (a type of white blood cell) in your bloodstream. Neutrophils play a crucial role in your immune system—they are one of the first types of cells that travel to the site of an infection. Once they reach the site of an infection, they ingest and fight potentially harmful microorganisms.
Because your chemotherapy will kill your stem cells, you will lose your ability to make new neutrophils. Since your neutrophils are not being replaced, the number of neutrophils in your bloodstream will drop to a very low level, leaving you at high risk of infection. You and your caregiver will work together to watch for any sign of infection. You’ll keep a record of your temperature, even when you are in your
NY Presbyterian Guest Facility or apartment, and you will have to take very careful precautions to avoid infection.
Low platelet count (thrombocytopenia)
In addition to losing your ability to make neutrophils and other types of white blood cells, you’ll also lose your ability to make platelets. Platelets clump together to help stop bleeding. After your chemotherapy, the number of platelets in your bloodstream will be very low, a condition called thrombocytopenia.
You will need to take special care to avoid cuts and strenuous activities that may cause bleeding. You need to take special care of your gums and mouth because it’s common for bleeding to happen there.
After your transplant, your healthcare team will take samples of your blood each day to count the number of neutrophils and platelets in your bloodstream.
As your stem cells take hold and start to make new blood cells, the number of neutrophils in your bloodstream (sometimes referred to as your absolute neutrophil count, or ANC) will increase, as will your number of platelets (called your platelet count). All together, these are known as “your counts” and they are key signs that your transplant has worked. You’ll hear the term “counts” used frequently by your healthcare team.
More in depth information about living with neutropenia and low platelet levels are included later in this guide.
After chemotherapy, the number of red blood cells in your blood will be very low.
Red blood cells are the cells that transport oxygen around your body. Because the number of red blood cells in your blood will be low (anemia), oxygen will not travel around your body as easily as before. This means that you will feel tired. Your caregiver may need to help you carry out day-to-day activities until your red blood cell count returns to normal. Don’t be afraid to ask for help, even with things you used to do with ease.
Even though you will feel tired after your chemotherapy and your transplant, you should still try to remain active.
Nausea and vomiting
Nausea and vomiting are common side effects of chemotherapy. Chemotherapy acts on a specific part of your brain that may trigger nausea and vomiting. Nausea and vomiting can also be caused by stress or just the thought of having chemotherapy. The amount of nausea and vomiting you have will depend on your past experience and the type of chemotherapy you will receive. Sometimes, you may experience nausea during your chemotherapy treatment, or it may be delayed for several hours or days. It is important to manage nausea because it can keep you from eating and drinking.
You will be given medication to prevent and control nausea prior to receiving chemotherapy. You will also be given a prescription for antinausea medication to take home with you. These medications work differently for each person. If the medication you are taking isn’t helping, tell your NP or doctor. You may need to try a different medication or take more than one kind of antinausea medication to feel better. Your healthcare team will work with you to prevent and treat nausea and vomiting.
Diarrhea is frequent, loose, watery bowel movements. It can also cause stomach cramps, gas, and pain in the stomach or rectal area. Diarrhea can be caused by cancer treatments, medications, infection, stress, or other medical conditions. If you are having diarrhea, you can become dehydrated due to loss of body fluids and electrolytes. If your diarrhea continues for more than 24 hours, call your doctor or NP. Medications are available to treat diarrhea but do not take any over-the-counter medication until you have been evaluated by your doctor, NP, or PA.
Constipation is the passage of dry, hard stool that occurs when materials move too slowly through the large intestine. The normal length of time between bowel movements varies for each person. If you are having fewer bowel movements than what is normal for you, or if you haven’t had a bowel movement for more than
2 days, you are probably constipated.
There are many causes of constipation, including not drinking enough liquids or not eating enough fiber, a decrease in your activity, not moving around or walking enough, and side effects of certain medications including chemotherapy. Medications are available to treat constipation. Talk to your NP, PA, or doctor if you haven’t had a bowel movement for more than 2 days.
Some chemotherapy drugs affect the cells that line the mouth and digestive tract. This is known as mucositis. Mucositis can cause redness, swelling, tenderness, and sores on the lining of your mouth, tongue, and lips. You may experience some mouth and throat discomfort that can make it difficult to eat or swallow.
Skin changes are common side effects of cancer treatment. These changes include increased dryness, flaking, discoloration, and darkening. Your skin will be very sensitive to the sun and may sunburn very easily. Avoid bright sunlight; and when outdoors, wear sun block (SPF 30) and protective clothing, such as long-sleeved shirts, long pants, and a hat.
The chemotherapy that kills cancer cells also kills the cells that make your hair. Most patients will lose their hair during their transplant.
Losing your hair can be an unpleasant and upsetting experience. Like many patients, you can choose to cut your hair short before your transplant to take control of this process and to lessen the shock of losing your hair. Talk this through with your caregiver, friends, and family.
Before your transplant, it is also a good time to think about whether you would like to wear a wig. Modern wigs can look very natural and wearing one might make you feel more comfortable. There are many wig stores in New York, a list of them is included in the resource Hair Loss During Cancer Treatment, which is included at the back of this guide. You can get one while you still have your hair, or bring a clipping of your hair, if you’d like your wig to match your natural hair.
As you know, your chemotherapy will kill not only the cancerous cells in your body, but also healthy stem cells that make the different types of cells in your blood. This is why you received a transplant.
Neutrophils, a type of white blood cell, play a crucial role in your immune system. In the days and weeks after your transplant, you will have a very low number of neutrophils in your bloodstream. This will leave you at high risk for infection.
You and your caregiver will need to take careful precautions to avoid infections while you are neutropenic. These precautions will include eating a special, low-microbial diet (a diet that contains a low number of potentially harmful microorganisms), washing carefully, taking care of your mouth, and other precautions.
Avoiding sources of infection
One of the best ways to avoid infection is to avoid sources of infection. This is easier said than done—you and your caregiver will need to be careful about seeing visitors, what you touch, and where you go. While you are neutropenic, you should try to avoid:
- Shaking hands with people. When you do shake hands with people, use hand sanitizer, such as Purell®, afterward
- Contact with animals, including your pets—they can’t stay with you during your transplant
- Contact with soil or dirt. You should not keep any plants in your NY Presbyterian Guest Facility or apartment and should not accept gifts of flowers or plants
Your caregiver will need to carefully manage who comes to see you while you are neutropenic. He or she needs to make sure that friends, family, and other visitors understand the following precautions:
- Children under the age of 12 are not allowed to visit or stay with you during your transplant period.
- People who have any signs of a cold, flu, or who have been exposed to any contagious illness are not allowed to visit you, either in the clinic or in your NY Presbyterian Guest Facility or apartment.
- Your caregiver and any visitors must wash their hands for 15 to 20 seconds before each visitor enters your room at the clinic or at your NY Presbyterian Guest Facility or apartment.
- You must wash your hands or use hand sanitizer prior to eating and after using the bathroom.
- While you are in the clinic, visitors and caregivers must use the visitor’s restroom in the hallway and not the restroom in your room. This is to minimize the spread of bacteria in the room.
- No fresh cut flowers or live plants are allowed in your NY Presbyterian Guest Facility or apartment or in your hospital room.
Telling people who love you and want to make sure that you’re okay that you can’t be with them can be difficult, but you and your caregiver need to be vigilant. You can explain to them that it’s just for a short period of time, and that by taking these precautions, you are making sure that you can see them as soon as possible. They will understand.
We strongly recommend that you use a computer or tablet and programs like Skype, Google Talk/Hangouts, or FaceTime to keep in touch with friends and family when you are neutropenic.
Eating a low-microbial diet
While your counts are returning to normal, and until told otherwise by your healthcare team, you will need to eat what is called a low-microbial diet.
A low-microbial diet contains fewer microbes (also called microorganisms) than would ordinarily be found in everyday foods. Microbes are tiny living organisms, such as bacteria, viruses, yeast, and molds. This diet helps people with weakened immune systems and low blood counts reduce the risk of food-borne illnesses caused by bacteria and other microbes that are found in some foods and drinks. Eating a diet that contains fewer microbes will help prevent you from getting sick.
Microbes can attach to foods and grow, but you can’t always see, smell, or taste them. They are more likely to grow on milk, unrefrigerated foods, undercooked foods, certain fruits and vegetables, unpasteurized juices, and vegetable sprouts—but in reality, they can grow on any food.
You will need to take careful precautions with the food you eat, including:
• Buying foods that you know have been stored properly and are safe to eat
• Storing food safely in your NY Presbyterian Guest Facility or apartment
• Keeping your kitchen very clean
• Keeping your refrigerator very clean
• Handling food safely
• Eating only food that you know has been prepared and cooked in keeping with a low-microbial diet
• Cooking foods thoroughly
Refer to the resource titled Low-Microbial Diet at the back of this guide. Follow the guidelines very carefully when you or your caregiver are buying, handling, preparing, and cooking food.
Showering and bathing
While you are neutropenic, keeping yourself clean is very important.
You should shower or bathe daily. When you shower or bathe, use soap that can kill germs. Look for the words “antibacterial” or “antimicrobial.” Dial® is one example, but there are many others.
When you shower or bathe, take extra care to wash yourself thoroughly. Begin with your upper body, then the middle section, and wash the lower area including your feet last. Wash carefully under your arms, in your anal and genital areas, and in any skin folds. Germs tend to live in those moist areas. You may shampoo your scalp with soap once a day.
After you urinate or move your bowels, wash your buttocks and genital area with antibacterial soap. You can also use moist wipes. Pat the area dry. Wash your hands well afterward.
When you wash or bathe, take care of your catheter; detailed instructions on how to protect your catheter against water are included at the back of this guide.
While you’re neutropenic and have a low platelet count, you will need to change the way you brush your teeth and care for your mouth. This will help to avoid infection and bleeding.
Follow these guidelines to take good care of your mouth:
- You will be given a mouthwash to rinse your mouth before and after meals and at bedtime. The number of rinses may be increased to every 2 hours, depending on how your mouth feels.
- Use an ultra-soft toothbrush.
- You may use toothpaste that you buy in the store, but only the mouthwash that your nurse gives you. Most mouthwashes that you buy in the store contain alcohol, which could irritate and dry your mouth and throat.
- Do not use dental floss.
- Avoid licking your lips. It increases dryness and chapping.
- Apply a lubricant like Burts Bees® or Chapstick® after you clean or rinse your mouth and every 2 to 4 hours as needed. This will help keep your lips moist.
- To avoid an infection in your mouth, your doctor will prescribe an oral antifungal antibiotic. Use it as instructed.
- If your mouth becomes sensitive, avoid hot, spicy, acidic, or coarse foods. You may prefer soft or liquid food served chilled or at room temperature.
- If you have pain in your mouth, your doctor will prescribe medication for the pain.
Platelets clump together to help stop bleeding. Because you will have a very low platelet count after chemotherapy, you will need to take special care to avoid cuts and strenuous activities that may cause bleeding. You will need to take special care of your gums and mouth because it’s common for bleeding to happen there. You and your caregiver will need to take these special precautions:
- Avoid sharp objects, such as razors, scissors, and nail clippers. You should only shave using an electric razor/shaver and not a razor that has a blade.
- Do not have manicures, pedicures, waxes, electrolysis, or tattoos.
- Do not have any dental work done.
- Follow the guidelines on mouth care (above).
- Do not use rectal suppositories, enemas, or tampons.
- Do not take your temperature rectally (in the rectum).
- Consider using stool softeners or laxatives if you are straining to have bowel movements.
- Avoid tight clothing or any clothing that you have to strain to put on or take off.
You should avoid any activities that may result in injury. These include:
- Contact sports
- Climbing ladders
- Strenuous exercise
- Weight lifting
You should take precautions when you are having sex. You should use lubrication if needed and avoid anal and oral sex. Avoid strong thrusting, as this can cause bleeding.
You should avoid medications that have not been prescribed to you by your medical team. Do not take:
- Aspirin or products that contain aspirin
- Nonsteroidal anti-inflammatory drugs (NSAIDs) such as ibuprofen (Advil®)
- Vitamin E
All of these medications make it more difficult for your blood to clot and are very dangerous for somebody with a limited ability to heal and clot.
Call your doctor if you develop any symptoms of bleeding. Be on the lookout for:
- A faint red rash on your torso, arms, or legs
- Vaginal spotting or heavy menstrual bleeding
- The appearance of broken blood vessels in the whites of your eyes
If you notice that you are bleeding, take the following steps immediately:
- Apply direct pressure on the bleeding site.
- After applying pressure, follow the BMT Emergency Guide. If it is between8:00 am and 8:00 pm, call the BMT Outpatient Clinic at (212) 639-2399. If it is after 8:00 pm, call (212) 639-2000 and ask for the doctor covering bone marrow transplant.
- Apply ice over the bridge of your nose for nosebleeds.
Call your doctor immediately if you:
- Have black bowel movements, blood in your stool, or rectal bleeding
- Have blood in your urine
- Have a headache that does not get better, blurred vision, or dizziness
- Cough up blood, vomit blood, or get a nose bleed that doesn’t stop after a few minutes with applied pressure or ice
Your chemotherapy will cause you to have a very low red blood cell count, a condition known as anemia. Hemoglobin in red blood cells carries oxygen from the lungs to the tissues in all parts of the body. When your red blood cell count is low, your body can’t carry oxygen as well. Anemia can make you feel tired and weak. You may also feel dizzy or lightheaded when changing positions quickly from lying to standing.
Some of the side effects of anemia include:
- Increased tiredness
- Rapid heartbeat
- Shortness of breath
- Pale skin
If you have anemia, your doctor may prescribe 1 or more of the following:
- A blood transfusion
- Changes to your diet
- Iron supplements
Your doctor may recommend a transfusion to boost the number of platelets or red blood cells in your body.
If your doctor recommends a transfusion, it will be given to you through your catheter during one of your regular visits to the Outpatient BMT Clinic.
A transfusion of red blood cells usually takes 2 to 4 hours. A transfusion of platelets usually takes 30 to 45 minutes.
Sources of blood for your transfusion
The blood used in your transfusion is donated at our blood bank. There is no substitute for real blood, so we are incredibly grateful to the people who donate blood.
Your friends and relatives may donate red blood cells and platelets—this is known as a directed donation. Your friends and relatives are eligible to donate if they:
- Are between 16 and 75 years old. No parental consent is required for those who are at least 17 years old
- Weigh at least 110 pounds
- Are in good health
- Have not had an illness such as hepatitis, jaundice, cancer, etc.
- Do not have signs of a cold or active allergy at the time of donation
- Have not taken aspirin, or any medication that has aspirin or NSAIDs (ibuprofen, Motrin®, Naprosyn®, Anaprox®, Advil®, Aleve®) within 3 days before giving blood
- Have identification showing their name and photograph or signature
- Have not consumed alcohol for at least 8 hours before donating
Blood donations can be arranged by appointment at our Blood Donor Room, which is located at:
MSKCC Schwartz Building Lobby
1250 First Avenue (between East 67th and East 68th Streets)
New York, NY 10065
For more information about making a directed donation and to make an appointment, your friends and family should call our Blood Donor Room at (212) 639-7643.
If your friend or family member has a blood type that isn’t compatible with yours, then their blood will be released for use with other patients at MSKCC.
Directed donations will be held for you for 30 days. After that, the blood will be released for use with other patients at MSKCC.
Making sure blood is safe
After it is donated, all blood is tested for:
- Hepatitis B and C
- Exposure to the HIV virus
- The presence of a virus associated with a very rare form of leukemia
- West Nile virus
- Trypanosoma cruzi (a type of microorganism)
The chance of getting any of these from donated blood is very small. Directed donations are tested in exactly the same way as other donations.
Risks associated with blood transfusions
Blood transfusions have some risks. These risks include the very slight chance of having an allergic reaction or of acquiring an infection through tainted blood.
Side effects during and after your transfusion
Transfusions sometimes cause reactions. The most common symptoms are fever, chills, and hives. These can be treated with a variety of medications. Transfusion reactions are rarely life threatening. The nursing staff constantly checks all patients while a blood transfusion is taking place.
Allergic reactions can sometimes occur up to 48 hours after the transfusion. Call your doctor immediately if you have:
- A temperature of 100.4°F (38°C) or higher or chills
- Flushing of your face
- Hives, rash, or itching
- Trouble breathing or shortness of breath
- Lower back pain
- Nausea or vomiting
- Weakness or fainting
- Blood in your urine
- Chest pain (If you are having chest pain, call your local emergency number immediately)
Throughout your treatment, it’s very important that you communicate clearly with your healthcare team and your caregiver about your side effects.
Tell your healthcare team how you’re feeling. Describe how your body feels. Describe how you’re doing emotionally. Tell them if anything is worrying you. If you notice changes in how you feel, describe what has changed. If anything bothers you, even if it seems minor, tell your healthcare team. The more information you can communicate to your healthcare team, the more they’ll be able to help you. There is usually something that they can do to make you feel more comfortable.
Children under 12 will not able to visit you during your transplant because of the risk of infection. This separation will be difficult for you, your child, and the rest of your family. We know from past experience that patients with children experience a range of feelings and reactions related to this separation.
We strongly recommend that you talk to one of our social workers about being separated from your children. Have your caregiver tell any member of your healthcare team that you’d like to speak with a social worker and they will make sure to come and see you. They will listen to your concerns and help you develop a plan to maintain strong ties to your children while you are undergoing treatment.
Here are some things that other patients have done to remain in contact with their children during their transplant.
- Use a computer or tablet and programs like Skype, Google Talk/Hangouts, or FaceTime to talk to your children regularly. Set up a time that you talk to them each day, such as when they get home from school and before they go to bed. Get into a routine of using the computer to see them and talk to them.
- Paint or create other crafts to send home. Craft supplies can be provided to you by the Patient Recreation Center. Ask a member of your healthcare team to arrange for the Patient Recreation Center to bring supplies to you.
- Use your cell phone or a tape recorder to make an audio recording of yourself as you read your children’s favorite stories. Upload these recordings to the web, give them to your caregiver, or e-mail them to your children. They can read along with these stories while listening to your voice.
- Keep copies of your children’s favorite stories with you in your apartment or NY Presbyterian Guest Facility. At night, you can use Skype to read along with them before they go to sleep.
- Ask your children to decorate your apartment or NY Presbyterian Guest Facility with pictures; your caregiver can bring them to you and you can show them hanging on the wall over Skype.
- Give your child a special coloring book or journal for times when they miss you, or when feelings are difficult. Your caregiver can bring the colorings to you. You can talk to your child about them over Skype or on the phone.
We understand that nothing will replace physical contact between you and your children, but we strongly encourage you to use all available technology to maintain a strong bond with them while you are away.
For more assistance related to maintaining your relationship with your children, contact your social worker.
Exercise is an important part of the recovery process during and after stem cell transplantation. Benefits of exercise include increasing energy, muscle strength, and bone density. Exercise can also prevent respiratory and circulatory problems and improve your ability to be as independent as possible.
While in the outpatient transplant program, you are encouraged to walk to and from the hospital daily, which will help maintain your conditioning. During the hours you are in the clinic, you are encouraged to walk in the hallways (wearing a mask and gloves) 2 to 3 times daily. While you are staying locally, you are encouraged to walk outside (weather permitting).
If you have special needs, you will be seen by a physical therapist for an evaluation.
Sexual intimacy provides pleasure and comfort for many people after their treatment. The information below can serve as a guide to being sexually active in a safe way after your transplant. You may have questions or concerns regarding your sexual activity. You are encouraged to discuss your concerns openly with your doctor, NP, PA, or nurse.
While it’s likely that you won’t be able to conceive a child naturally after high-dose chemotherapy, you and your partner should use contraception (birth control) during and after your chemotherapy. If a woman becomes pregnant with sperm or eggs damaged by exposure to radiation, chemotherapy, or other anticancer medications, there is a risk of miscarriage or birth defects.
It’s important to pick a method of birth control that fits your lifestyle and will be effective. Women can speak with their gynecologists to choose between the many available options. These options include condoms, which are very effective in preventing pregnancy when used correctly.
Protecting your partner from exposure to chemotherapy and other anticancer medications
There is little information about how much anticancer medication gets into a person’s body fluids, and even less about whether this poses any risk to a sexual partner. If this is a concern for you, consider using a barrier device whenever your partner may come into contact with your semen (if you are male) or vaginal fluids (if you are female). Barrier devices include condoms and dental dams. We don’t know how long these medications may be in your body fluids, but if you are concerned about this, you should use barrier devices each day you have chemotherapy and for 1 week afterward.
Protecting yourself from infection or bleeding during sex
You will be at increased risk of infection during your transplant period and for many months after your treatment.
Until your doctor tells you that your blood counts and immune system have recovered, follow these precautions:
- Avoid sex that involves penetration or contact with mucous membranes while your blood counts are low (your platelet count needs to be more than 50,000). This includes vaginal, oral, and anal sex or inserting fingers, vibrators, or other sex toys into your vagina or anus.
- Use latex condoms each time you have vaginal, oral, or anal sex.
- Use a barrier device (condoms or dental dams) anytime your partner’s saliva, vaginal secretions, or semen could enter your mouth.
- Abstain from any sexual activity that could expose your mouth to feces.
- Avoid sex that involves contact with mucous membranes if a genital infection is suspected or present in either you or your partner.
Hugging, cuddling, gentle touching, and kissing skin are other ways you can be intimate with your partner during this time. For additional information about being sexually active during and after treatment, see the additional resources at the back of this guide:
The American Cancer Society publishes 2 well-written books on sexuality following cancer treatment. They are available free of charge from your local American Cancer Society or on the ACS website:
Engraftment is when your body accepts the transplant and your white blood cell count starts to recover.
Almost immediately after your stem cells are infused into your body, they will travel through your bloodstream into your bone marrow. Once the stem cells arrive in your bone marrow, they will begin to engraft. This usually happens about 10 to 14 days after your transplant, but this may vary depending upon your disease and exact treatment. Platelets and red blood cells usually take a little longer to recover than white blood cells.
Each day when you return to the Outpatient BMT Clinic, you will have blood drawn. This blood will be analyzed and the different types of cells in your blood will be counted. When your stem cells engraft and start to divide, the number of white, red, and platelet cells will increase.
While you are waiting for engraftment, you may need to have blood and platelet transfusions. You’ll be given injections of growth factor, which is a medication that will speed up the production of white blood cells in your body.
Remember, you will be very vulnerable to infection during this time. You will need to take precautions, including avoiding sources of infection, washing your hands regularly, and eating a low-microbial diet. You will be closely monitored for any signs of infection.
When your cells start to engraft, you may experience bone pain or a rash on your body. These are common symptoms experienced during engraftment.
You will remain in your nearby apartment or NY Presbyterian Guest Facility for several weeks following your stem cell transplant, returning to the Outpatient BMT Clinic each day.
When your healthcare team sees that you are ready, they will allow you to return home. You and your caregiver will check out of your apartment or NY Presbyterian Guest Facility. You will still visit the clinic, but less frequently.
Before you return home, it’s important that you and your caregiver prepare for this transition. We created a resource titled Returning Home after Your Autologous Transplant. It is included at the end of this guide.
This guide provides guidance and support for caregivers of BMT patients.
This glossary explains terms that you may read in this guide, or hear from your healthcare team. If you hear a word or expression not listed here, don’t be afraid to ask your doctor or nurse.
Absolute neutrophil count - The percentage of polys and bands that are part of your total white blood count. If your ANC is less than 1000, you are very prone to infection.
Ablative therapy (ab-lay-tive) - Treatment that removes or destroys the function of an organ or system. For example, high-dose chemotherapy and radiation before a stem cell transplant is considered ablative therapy because it wipes out your immune system.
Afebrile - Having no fever; normal temperature.
Alopecia (al-o-pee-shuh) – See hair loss.
Ambulatory - The ability to walk; not confined to bed.
Anal - Related to the anus.
Analgesic - A drug used for reducing pain.
Anaphylaxis - An allergic reaction ranging from relatively mild (hives) to very serious (shock).
Anemia (uh-neem-ee-uh) - Low red blood cell count, which can cause you to feel fatigued and have shortness of breath. Anemia can be caused by a variety of conditions and diseases.
Anesthesiologist (an-es-the-zee-ol-o-jist) - A doctor who specializes in giving medications or other agents that prevent or relieve pain, especially during surgery.
Anesthetic - A medication or other substance that causes a loss of feeling or awareness. Local anesthetics cause a loss of feeling in one small area of the body. Regional anesthetics cause a loss of feeling in a part of the body, such as an arm or leg. General anesthetics cause a loss of feeling and a complete loss of awareness that feels like a very deep sleep.
Antibiotic – Medication used to kill organisms that cause disease. Since some cancer treatments can reduce your body’s ability to fight infection, antibiotics may be used to treat or prevent these infections.
Antibody - A protein produced by immune system cells and released into your blood. Antibodies defend against foreign agents such as bacteria. For example, if you get a tetanus vaccine, you will make a protein (antibody) which protects against tetanus, called a tetanus antibody. Each antibody works against a specific substance called an antigen.
Anticoagulant - Medication that reduces your blood’s ability to clot.
Antiemetic (an-ti-eh-meh-tik) - A drug that prevents or relieves nausea and vomiting.
Antifungal - A medication that kills fungi (organisms that cause infections). Patients undergoing treatment for cancer are especially vulnerable to fungal infections.
Antigen (an-tuh-jen) - A substance that causes your body’s immune system to react. This reaction often involves the production of antibodies. For example, your immune system’s response to antigens that are part of bacteria and viruses helps you resist infections. Cancer cells have certain antigens that can be found by laboratory tests. They are important in cancer diagnosis and in watching response to treatment.
Antihistamine - A medication used to relieve the symptoms of allergies like hives, stuffy nose, etc.
Antimicrobial - A substance that kills microorganisms such as bacteria or mold, or stops them from growing and causing disease.
Antinausea – See antiemetic.
Antioxidants (an-ti-ox-uh-dents) - Compounds that hold back chemical reactions with oxygen and are thought to reduce the risk of some cancers. Examples are vitamins C, E, and beta-carotene.
Apheresis - A procedure in which blood is collected, part of the blood (such as platelets or white blood cells) is taken out, and the rest of the blood is returned to the donor. Also called pheresis.
Artery - A vessel that carries oxygen-rich blood from your heart to your tissues. Blood is under pressure in arteries.
Autologous - Taken from an individual’s own tissues, cells, or DNA.
Axilla (ax-il-la) - Your armpit.
Bacteria (singular bacterium) - Small germs that can cause infection.
Benign - Not malignant or cancerous.
Biopsy (buy-op-see) - The removal of a sample of tissue to see whether cancer cells are present and to determine an exact diagnosis. There are several kinds of biopsies.
Blast cells – An immature blood cell.
Blood - The body fluid that flows through all the vessels except the lymph vessels and performs a number of critical functions. Blood is composed of a liquid portion called plasma and 3 other components: red blood cells, white blood cells, and platelets.
Blood chemistries - Multiple chemical determinations of your blood content. These tests are helpful in assessing your kidney and liver function.
Blood count - A lab study to evaluate the amount of white blood cells, red blood cells, and platelets in your body.
Blood transfusion - The infusion of red blood cells or platelets into your bloodstream to replace blood loss or to treat anemia.
Blood typing and cross matching - Making sure that the blood from a donor is compatible with yours before a blood transfusion. Blood cells contain factors that are not the same in all people. Before a transfusion can be given, blood samples from you and the donor are typed, or classified according to which of these factors are present. The 4 principal red blood cell types or groups are A, B, AB or O. Other factors such as Rh factor must also be checked.
Bone marrow - The spongy material in the center of bones where blood cells are made.
Bone marrow aspiration and biopsy - A procedure in which a needle is placed into the cavity of a bone, usually the hip or breast bone. A small amount of bone marrow is removed and examined under a microscope.
Bone marrow, stem cell, or cord blood transplant - A treatment for cancer, which severely injures or destroys your bone marrow. You are given high-dose chemotherapy with or without radiation (total body irradiation) to kill the cancer cells. The drugs also destroy your remaining bone marrow, preventing your body’s natural ability to fight infection. In allogeneic transplantation, the donor of the stem cells is another person. Stem cells can come from bone marrow, blood, or umbilical cord blood. In autologous transplantation, stem cells are taken from the patient. Some of your own bone marrow or stem cells are removed and set aside before treatment and then reinfused into your body. Blood cells start being produced a few weeks later.
Bone scan - An imaging method that gives important information about the bones, including the location of cancer that may have spread to the bones. A low-dose radioactive substance is injected into a vein and pictures are taken to see where the radioactivity collects, pointing to abnormalities.
Bowel - Pertaining to your intestines.
Bowel movement - Movement of feces through the bowel and out the anus. Also called defecation.
Brain scan - An imaging method used to find anything abnormal in the brain, including brain cancer and cancer that has spread to the brain from other places in the body. A radioactive substance is injected into a vein and pictures are taken to show where the radioactivity collects, indicating an abnormality.
Breastbone - The long, flat bone that forms the center front of the chest wall. The breastbone is attached to the collarbone and the first 7 ribs. Also called the sternum.
Capillaries - Tiny blood vessels located throughout the tissues of your body. They connect your arteries with your veins. Substances pass through them to nourish your cells.
Cardiac - Pertaining to your heart
Cardiomyopathy - Damage to the heart muscle affecting the way the heart pumps blood through the body.
CAT scan or computed axial tomography - A series of detailed pictures of areas inside the body taken from different angles. The pictures are created by a computer linked to an x-ray machine. Also called computed tomography scan, computerized axial tomography scan, computerized tomography, and CT scan.
Cataracts - A clouding of the lens of the eye that can result from radiation therapy.
Catheter (cath-eh-tur) - A thin, flexible tube through which fluids enter or leave the body; e.g., a tube to drain urine.
Central venous catheter - A thin, flexible tube that is inserted into a vein in the upper arm, thigh, neck, or below the collarbone. It is guided (threaded) into a large vein near the heart called the vena cava or into the right atrium of the heart. It is used for taking blood samples, and also to give liquids, blood transfusions, chemotherapy, and other medications. It avoids the need for repeated needle sticks.
Central venous line - A method of giving IV fluids, blood products, and medications. A catheter is inserted into a neck vein and into your other large blood vessels. There are many different types of central line catheters that may have multiple ports or lumens. Multiple ports allow more than one IV solution to be given at one time. Blood can also be drawn from this type of catheter.
Chemotherapy - Medications used to destroy malignant cells. Chemotherapy is often used with surgery or radiation to treat cancer.
Clinical trials - Human research studies that test new drugs or treatments and compare them to current, standard treatments. Before a new treatment is used on people, it is studied in the lab. If lab studies suggest the treatment works, it is tested with patients. These human studies are called clinical trials. Questions the researchers want to answer are: Does this treatment work? Does it work better than the one we use now? What side effects does it cause? Do the benefits outweigh the risks? Your doctor may suggest a clinical trial. Participation is voluntary.
Clot - To change from a liquid form into a solid or semi-solid; for example, when blood clots, it changes from a liquid to a semi-solid, helping to stop bleeding.
Colon - The large intestine.
Colony stimulating factors (CSF) - Types of growth factors that promote growth and division of blood-producing cells in bone marrow. CSFs are naturally produced in the body. Extra amounts may be given to reduce or prevent side effects of chemotherapy. See growth factors.
Complementary therapy - Therapies used in addition to conventional therapy. Some complementary therapies may help relieve certain symptoms of cancer, relieve side effects of conventional cancer therapy, or improve a patient’s sense of well-being.
Complete blood count (CBC) - A blood test to measure the type and number of blood cells. It lets doctors follow the course of your disease and to select the right dose of medication. The values are expressed in percentages.
Constipation - A condition of the bowel (large intestine). Difficulty having a bowel movement.
Contagious - A disease that can be spread from one person to another. Cancer is not contagious.
Creatinine clearance - A test that compares the level of creatinine in urine with the level of creatinine in the blood. Creatinine is a breakdown product of creatine, which is an important part of muscle. The test helps provide information on kidney function.
Culture - A procedure using a sample of blood, urine, throat secretions, or other biological material. It determines the specific germ (bacteria, fungus, or virus) responsible for an infection. Cultures also help determine which antibiotics may work best.
Cytogenetics - The process of analyzing the number and shape of cell chromosomes. The normal number of chromosomes is 46. Chromosomes may have changes in them when a patient develops cancer.
Decongestant - A medication that helps shrink mucous membranes and decrease the production of mucous.
Dehydration - Excessive loss of fluids from your body.
Diagnosis - Identifying a disease by its signs or symptoms and by using imaging procedures and laboratory findings.
Diarrhea - Frequent, loose, and watery stools.
Dietitian - A health professional with special training in nutrition who can help with dietary choices. Also called a nutritionist.
Diuretic - Substance that increases the elimination of water and salts (urine) from your body.
Dizziness - A sensation of instability and sometimes a feeling that you are aboutto fall.
Dose - The amount of medication taken, or radiation given, at one time.
Dysphagia - Difficulty swallowing.
Dyspnea - Shortness of breath.
Dystonic reaction - Tightening of your facial and neck muscle. It is a possible side effect of some antiemetic medications.
Echocardiogram (ultrasound cardiography) - A method of obtaining a graphic picture of the internal structure, position, and motion of your heart. It is done by using sound waves directed through your chest.
Edema - Build up of fluid within the tissues; swelling.
Electrocardiogram (EKG) - A method of evaluating your heart’s rhythm and muscle function by measuring electrical impulses.
Electrolytes - A general term for the many minerals needed to provide the proper setting for the cells of your body. Common electrolytes include calcium, sodium, potassium, and chloride.
Emesis - To vomit.
Engraftment - When stem cells infused into the body start to fix in place, grow, and make new blood cells.
Epstein-barr virus (EBV) - The virus that causes infectious mononucleosis or “kissing disease.” In patients whose immune system is not normal, it can cause an EBV-associated lymphoma. Symptoms include fever and swollen lymph nodes.
Esophagus - A tube that carries swallowed food to the stomach.
Excision - Surgical removal of tissue.
Expectorant - Medication that makes mucous in your respiratory tract thinner and easier to cough out.
Febrile – Fever; elevated body temperature.
Fellow - A physician who has completed residency. May be a fully trained pediatrician or internist and is doing further study to become a subspecialist in a field of interest.
Fertility preservation - A type of procedure used to help preserve a person’s ability to have children. A fertility preservation procedure is done before a medical treatment that may cause infertility, such as radiation therapy or chemotherapy. Examples of fertility preservation procedures include sperm banking, egg freezing, in vitro fertilization with embryo freezing, and certain types of surgery for cervical and ovarian cancer.
Filgrastim - A medication used to increase the number of white blood cells in patients who are receiving chemotherapy. Also called Neulasta® or pegfilgrastim.
Fungi (singular fungus) - A group of microorganisms larger than either bacteria or viruses. They can cause a serious infection when your immune system is compromised.
Gamma globulin - A protein component of blood plasma. It contains antibodies that are helpful against certain infections.
Gastroenterologist (gas-tro-en-ter-ol-o-jist) - A doctor who specializes in diseases of the digestive (gastrointestinal) tract.
Gastrointestinal tract/GI tract - The digestive tract. It is made up of the organs and structures that process and prepare food to be used for energy. For example, the stomach, small intestine, and large intestine.
GCSF (granulocyte colony-stimulating factor) - Medications that stimulate the production of neutrophils (a type of white blood cell). These include filgrastim (Neupogen®), pegfilgrastim (Neulasta®), and plerixafor (Mozobil®).
General anesthetic - A medication that puts you to sleep to prevent pain during
Genital - Refers to the genitalia (external and internal sex organs and glands).
Gland - See lymph node.
Groin - The area of your body where the legs join the abdomen.
Growth factors - A naturally occurring protein that causes cells to grow and divide. Too much growth factor production by some cancer cells helps them grow quickly. Other growth factors help normal cells recover from the side effects of chemotherapy.
Hair loss - This often occurs as a result of chemotherapy or from radiation therapy to the head. In most cases, the hair grows back after treatment ends.
Harvest - The removal of bone marrow or peripheral blood stem cells to be used for a hematopoietic blood stem cell transplant (HCT).
Hematocrit - The percentage of the volume of whole blood that is made up of red blood cells.
Hematologist (hem-uh-tahl-o-jist) - A doctor who specializes in diseases of the blood and blood-forming tissues.
Hematology - The study of blood and blood-forming organs.
Hematology/oncology (HEME/ONC) - A branch of medical science that treats disorders of the blood, blood-forming tissues, and tumor cells.
Hematoma (hem-uh-to-ma) - A collection of blood outside a blood vessel caused by a leak or an injury; a bruise.
Hematuria - Blood in the urine. Urine may be pink, red, or brown (cola colored).
Hemoglobin - The substance in red blood cells that carries oxygen.
Hemorrhage - A term for loss of blood from injury to the blood vessels or by a lack of certain blood elements, such as platelets.
Hemorrhagic cystitis - Bleeding into the bladder that causes bloody urine. It can be caused by certain viruses, as well as certain chemotherapy medications such as ifosfamide or cyclophosphamide.
Heparin - A medication that decreases the ability of blood to clot. It is often used to prevent clotting in central line catheters.
Hepatitis - An inflammation of the liver usually resulting in jaundice.
Hives - Itching welts caused by an allergic reaction.
HL-A (human leukocyte antigens) - Proteins (antigens) that appear on white blood cells, as well as cells of almost all other tissues. By typing for HL-A antigens, donors and recipients of white blood cells, platelets, and organs can be “matched.” This helps to make sure the transfused and transplanted cells will survive.
Hodgkin’s disease - A type of cancer that affects the lymphatic system. It occurs in a lymph node. Named for the doctor who first identified it.
Hospitalist - A doctor who specializes in the care of hospitalized patients.
Hydration - A reference to the amount of water in the body. You may be dehydrated, well hydrated, or excessively hydrated (edematous).
Hyperglycemia - High blood sugar.
Hypertension - High blood pressure.
Hypocalcemia – Not enough calcium in the blood.
Hypoglycemia - Low blood sugar.
Hypokalemia - Too little potassium in the blood.
Hypotension - Low blood pressure.
Ileus - Severe constipation.
Iliac crest - The top edge of your hip bone. Marrow is usually taken from it for a diagnosis of blood cell diseases.
Immune reaction - A reaction of normal tissues to substances recognized as “foreign” to the body.
Immune system - The system that defends the body against infection from bacteria and viruses. The immune system may also help the body fight some cancers.
Immunity - The state of your body’s defenses against an infection or possibly against a certain cancer.
Immunizations - Vaccines given to help your body resist disease.
Immunosuppression (im-mune-no-suh-preh-shun) - A state in which your immune system does not respond properly. This condition can be present at birth. It can also be caused by certain infections (such as human immunodeficiency virus or HIV), or by certain cancer therapies.
Immunotherapy (im-mune-no-ther-uh-pee) - Treatments that promote or support your immune system’s response to a disease such as cancer.
Implantable port (port-a-cath, infuse-as-port, or mediport) - A device that delivers fluids, medications, or blood directly into a vein. The entire device is surgically implanted under the skin and can be used for an extended period of time.
Incubation period - The period between exposure to a germ and the first sign of illness (e.g., chicken pox, from 8 to 21 days).
Indwelling catheter (Broviac or Hickman) - A central line surgically placed (usually in the chest) and into a large vein in your neck. It is used to administer medications, fluids, and blood products. May also be used to draw blood for testing.
Infection - Invasion of the body by disease-producing organisms.
Infectious disease - A disease caused by germs; one that can be passed from one person to another. Cancer is not an infectious disease.
Infertility - Not being able to produce children.
Inflammation - The triggering of local body defenses. It results in the outpouring of defensive cells (“polys”) from the circulation system into the tissues. Frequently associated with pain and swelling.
Informed consent - A legal document that explains a course of treatment and the risks, benefits, and possible alternatives. The process by which patients agree to treatment. If you are under 18 years of age, your parents or legal guardian must also sign this form.
Infusions - The introduction of a fluid into a vein.
Injections - Injections may be given intramuscularly (into a muscle), intravenously (into a vein), subcutaneously (just under the skin) or intrathecally (into the spinal column space).
Inpatient - A patient who is admitted to the hospital for treatment requiring an overnight stay.
Intern - A doctor in the first year of training following graduation from medical school.
Intrathecal (IT) - Within the spinal column. IT medication is given directly into the spinal column.
Intravenous (IV) - The administration of a medication or fluid directly into the vein.
Investigational drugs - Medications being studied by clinical investigation.
Irradiated - Treated with radiation.
Jaundice - A yellow color of the skin and white portion of the eyes. It is from a buildup of bilirubin, which is a broken down product of hemoglobin. It is a sign of liver disease or a blockage of the major bile ducts.
Kidney - The main organ involved in the filtering of certain bodily wastes. Also maintains the proper mineral and water balance.
Laxative - A substance that encourages bowel movements.
Lesion (lee-zhun) - A change in body tissue; sometimes used as another word for tumor.
Leukapheresis - The process of filtering white cells, leukocytes, or “polys” from the blood of the patient or a healthy donor. These cells may be given to you if you have a severe infection and a shortage of “polys”.
Leukemia (loo-key-me-uh) - Cancer of the blood or blood-forming organs. If you have leukemia, you may have a noticeable increase in white blood cells (leukocytes).
Leukocytosis (loo-ko-sigh-toe-sis) - Having more than the usual number of white blood cells.
Leukopenia - Decrease in white blood cell count.
Liver - An organ in your body that performs many complex functions. These include processes related to digestion, production of certain proteins, and elimination of many of the body’s waste products.
Local anesthetic - A medication given by injection into a part of your body to prevent pain in the area without putting you to sleep.
Long-term survivor – If you are 5 years from the last sign of disease and at least two years off therapy.
Lubricant - An oily or slippery substance.
Lumbar puncture (LP)/spinal tap - A procedure in which a thin needle is placed in your spinal canal. It is done to remove a small amount of spinal fluid or to give medication through the central nervous system.
Lumen - A tube that forms part of a catheter. Many catheters exit the body and separate into several lumens.
Lymph nodes/glands - An important part of your body in the defense against infections; commonly known as glands.
Lymphatic system - The tissues and organs that make and store lymphocytes (cells that fight infection) and the channels that carry the lymph fluid. It includes the lymph nodes, spleen, thymus, and bone marrow. The lymphatic system is an important part of your body’s immune system. Invasive cancers sometimes enter your lymphatic vessels (channels) and spread to your lymph nodes.
Lymphocytes - A type of white blood cell that helps your body fight infection. There are 3 main types of lymphocytes: (1) T cells help fight infections such as viruses and fungi. (2) B cells make proteins called antibodies that help fight infection. For example, if you receive a vaccination against tetanus, you make a protein (antibody) against tetanus. (3) Natural killer cells help fight viruses and other germs. They are sometimes given to help fight cancer.
Lymphocytosis (limf-o-sigh-toe-sis) - Having too many lymphocytes.
Lymphoma (lim-foam-uh) - Cancer of the lymphatic system, a network of thin vessels and nodes throughout the body. Lymphoma involves a type of white blood cell called a lymphocyte. The two main types of lymphoma are Hodgkin’s disease and non-Hodgkin’s lymphoma. The treatment methods for these two types of lymphomas are very different.
Magnetic resonance imaging (MRI) - A method of taking pictures of the inside of the body. Instead of using x-rays, MRI uses a powerful magnet and transmits radio waves through the body. The images appear on a computer screen, as well as on film. Like x-rays, the procedure is physically painless. However, you may find it uncomfortable to be inside the MRI machine.
Malignant tumor (muh-lig-nant) - A mass of cancer cells that may invade surrounding tissues or spread to distant areas of the body.
Metabolism - A general term for the many chemical processes needed for your body to live.
Metastasis (meh-tas-teh-sis) - The spread of cancer cells to distant areas of the body by way of the lymph system or bloodstream.
Microliter - One millionth of a liter.
Microorganism - A general name for any small living organism, such as bacteria, viruses, and fungi.
Mobilization - Taking medication to stimulate the growth of stem cells and move them into the bloodstream.
Monoclonal antibodies - Antibodies made in a laboratory to target substances called antigens. Monoclonal antibodies can be attached to chemotherapy drugs or radioactive substances. They are being studied to see if they can seek out antigens unique to cancer cells and deliver treatment directly to the cancer. This would kill the cancer cells without harming healthy tissue. Monoclonal antibodies are also used in other ways, for example, to help find and classify cancer cells.
Mozobil® - A brand of plerixafor. Plerixafor is a medication used together with granulocyte colony-stimulating factor (GCSF) to help move stem cells them from the bone marrow to the blood.
Mucositis - Inflammation of the mucous membrane (inside the mouth). It can cause painful mouth sores.
Mucous membrane - A lining of the internal surface of the body that produces mucous.
Myeloma - Cancer of blood plasma cells, a type of white blood cell.
Narcotic - A medication that relieves pain and can make you sleepy.
Nephrologist (nef-rol-o-jist) - A doctor who specializes in diseases of the kidneys.
Neupogen® - A brand of granulocyte colony-stimulating factor (GCSF)—a medication that stimulates the production of neutrophils (a type of white blood cell). Also called filgrastim.
Neurology - The branch of medical science that deals with the nervous system.
Neutropenia - A condition in which there is a lower than normal number of neutrophils (a type of white blood cell) in the body. While you are neutropenic, you will need to take precautions to prevent infection.
Neutrophils (new-trow-fils) - White blood cells that fight bacterial infection.
Non-Hodgkin’s lymphoma - Cancer of the lymphatic system. The difference between non-Hodgkin’s lymphoma and Hodgkin’s lymphoma is a type of cell called the Reed-Sternberg cell. This cell is only present in Hodgkin’s lymphoma. The treatment methods for Hodgkin’s and non-Hodgkin’s lymphomas are very different.
NPO - Abbreviation for “nothing by mouth.”
Nuclear medicine scan - A method for finding diseases of internal organs, such as the brain, liver, or bone. Small amounts of radioactive substances (isotope) are injected into the bloodstream. The isotope collects in certain organs. A special camera is used to create an image of the organ and detect areas of disease.
Nurse practitioner (NP) - A registered nurse with a master’s or doctoral degree. Licensed nurse practitioners diagnose and manage illness and disease. They work closely with your doctor. They can prescribe medication.
Oncologist (on-call-o-jist) - A doctor with special training in the diagnosis and treatment of cancer.
Oncology (on-call-o-jee) - The branch of medicine concerned with the diagnosis and treatment of cancer.
Ophthalmologist (of-thuh-mal-o-jist) - A medical doctor who specializes in diseases of the eye.
Orally - By mouth; e.g., a medication to be taken orally is one that is swallowed.
Organ - Several tissues grouped together to perform one or more functions in the body.
Orthopedic surgeon (or-tho-pe-dik) - A surgeon who specializes in diseases and injuries of the bones.
Osteoporosis - Brittle bones due to the loss of calcium.
Outpatient - A patient who visits a healthcare facility for diagnosis or treatment without spending the night. Sometimes called a day patient.
Packed red blood cell transfusion (PRBC) - A transfusion of red blood cells without the serum.
Palate - The roof of the mouth.
Pancreas - A large gland in the upper part of your abdomen. It secretes enzymes (chemicals) into your intestines for the digestion of food. It makes insulin, which is secreted into your bloodstream.
Pancreatitis - Inflammation (swelling) of your pancreas.
Pancytopenia - The decrease of all blood cells (red, white, and platelets).
Parotid gland - Salivary glands located at the side of your face in front of each ear. These glands become large if you have mumps. Total body irradiation may cause painful swelling of these glands, which is temporary.
Pathology - The branch of medicine involved in making diagnoses from the examination of tissues.
Pedicure - A beauty treatment in which toenails are trimmed/shaped and often polished or painted.
PET scan - A scan used to look at the organs and the way they function in the body. A small amount of radioactive sugar is injected into a vein, and a scanner is used to make detailed, computerized pictures of areas inside the body where the glucose is used. Because cancer cells often use more glucose than normal cells, the pictures can be used to find cancer cells in the body. Also called a positron emission tomography scan.
Petechiae – Tiny, localized hemorrhages from small blood vessels just below the surface of the skin. They are often caused by a low platelet count. They clear up as the platelet count increases.
Ph - A symbol that means acidity or alkalinity. A solution of pH 7 is neutral. Below 7 is acidic and above 7 is alkaline. The urine is usually slightly acidic, with a pH of 5.3.
Pharyngitis - Inflammation of the throat; sore throat.
Pharynx – Throat.
Pheresis/apheresis - A special method of collecting blood when only one part of the blood is needed.
Phlebitis - Inflammation of a vein. Signs include pain, swelling, and tenderness in an area. If a superficial vein is involved, the phlebitis can be felt as a cord-like thickening along the vein.
Physician assistant (PA) - A licensed medical professional who practices medicine under physician supervision. Physician assistants diagnose and manage illness and prescribe medications.
Plasma - The liquid portion of the blood in which blood cells are suspended. It contains many proteins and minerals necessary for normal body functioning.
Platelet - A part of the blood that helps repair (plug) holes in blood vessels after an injury. If you have low platelets, you are at risk for bleeding. Chemotherapy can cause a drop in the platelet count. This is called thrombocytopenia.
Plerixafor - A medication used together with granulocyte colony-stimulating factor (GCSF) to move stem cells from the bone marrow to the bloodstream.
Pneumonia - Infection of the lung.
Polys (neutrophils or granulocytes) - The group of white cells that helps to resist bacterial infection. A “poly” count of less than 1000 means less than normal protection and risk of infection.
Postop - After surgery.
Potassium - An element found normally in your blood; it is important for heart and muscle function.
Preop - Before surgery.
Prognosis (prog-no-sis) - A prediction of the course of disease; the outlook for a cure. A prognosis is based on the average result in many cases. It may not accurately predict your outcome, since the clinical course can vary from patient to patient.
Prophylactic - Treatment designed to prevent a disease or a complication that has not yet become clear.
Protocol (pro-teh-call) - A formal outline or plan, such as a description of what treatments you will receive and exactly when each should be given.
Pulmonary - Concerns or affects your lungs.
Pulmonary fibrosis - Thickened tissue in your lungs that causes coughing, difficulty breathing, and x-ray changes.
Pulmonary function tests (PFTs) - Special tests that are designed to evaluate the function of your lungs.
Radiation oncologist - A doctor who specializes in using radiation to treat cancer.
Radiation recall - Inflammation (swelling) of exposed skin and organs in areas of radiation therapy.
Radiation therapy - Treatment with high-energy x-rays to kill cancer cells or shrink tumors. The radiation can come from outside of the body (external radiation). Or, it can come from radioactive materials placed directly in the tumor (internal or implant radiation). Radiation therapy can be used to reduce the size of a tumor before surgery. It can be used to destroy any remaining cancer cells after surgery. Or, in some cases, it may be the main treatment.
Rectal - By or having to do with the rectum. The rectum is the last several inches of your large intestine closest to your anus.
Rectum - The last part of your large intestine.
Red blood cell - A cell that carries oxygen to all parts of the body. Also called erythrocyte and RBC.
Regression - The reduction of cancer, usually as the result of therapy. It is shown by the decreased size of the tumor or tumors.
Reinduction - To start over, i.e., a new treatment or protocol.
Rejection - The body’s inability to accept transplanted stem cells.
Relapse - Return of cancer after a disease-free period.
Remission - When the signs and symptoms of cancer fully or partly disappear. The period during which a disease is under control. A remission may not be a cure.
Renal - Pertaining to your kidneys.
Resident - A physician in the second or third year of training after completing medical school.
Resistance - Your ability to fight off and avoid disease.
Respiration - The process of breathing.
Respiratory tract - All parts of your body used for breathing.
Scan - A study using either x-rays or radioactive isotopes to create images of internal body organs.
Sedative - A medication given to make you drowsy or sleepy.
Sedimentation rate (SED) - The change in speed of the red blood cell count expressed in millimeters per hour. A SED rate that is over 25 or is increasing may indicate infection.
Septicemia/sepsis - A very serious bacterial or fungal blood infection. It usually spreads from another site of infection such as skin, bowel, or urinary tract. It can cause high fever, shaking chills, and heavy sweating. It is more likely to occur in patients with a very low white blood cell count.
Shingles (herpes zoster) - A viral infection of the nerve endings in the skin. It can cause blisters, crusting, and severe pain along the nerve. It is the same virus that causes chicken pox. Children who have not had chicken pox may get it from contact with someone who has shingles.
Simulation - When measurements and x-rays are taken and actual radiation treatment fields are determined.
Sinuses - Hollow spaces in the bones of your head.
Spinal cord - The cord or nerve tissue that runs through the center of your spinal column. It connects your brain to other parts of your body.
Spleen - An organ that filters your blood. It removes debris and old or dying cells from circulation. It also removes bacteria from the blood during the early stages of severe infections. It often becomes enlarged in those with leukemia and certain other diseases.
Stem cells - Primitive blood-forming cells in the bone marrow that give rise to white blood cells, red blood cells, and platelets. They are like the stem of a plant that gives rise to the flowers and leaves.
Sternum - The long, flat bone that forms the center front of your chest wall. Your breastbone is attached to the collarbone and your first 7 ribs. Also called breastbone.
Stomatitis - Mouth sores; this can be a side effect of some kinds of chemotherapy.
Suppository (rectal or vaginal) - A medication prepared for insertion into the anus or vagina, where it is generally absorbed into the bloodstream.
Susceptible - Tendency to develop a disease if exposed to it; not having immunity.
Symptom - A change or sign in the body or its function that indicates disease or infection.
T cell depleted blood stem cell transplant - A type of transplant in which T cells are removed in a laboratory after donor stem cells are obtained. This process reduces the likelihood of graft versus host disease that is caused by the donor’s
T cell or T lymphocyte - A type of white blood cell or lymphocyte that plays a major role in the body’s defense against viral and fungal infections.
TBI (total body irradiation) - High-dose radiation treatments given to the whole body.
Testicular mass - A swelling of the testis or testicle, the male reproductive gland.
Thrombocytopenia (throm-bo-sigh-toe-peen-e-uh) - A decrease in the number of platelets in your blood.
Thrombophlebitis - An inflammation of a vein.
Tinnitus - Ringing in your ears.
Tissue - A collection of cells similar in structure and function.
Tissue typing (human leukocyte antigen, HLA) - A special test of white blood cells to check the genetic match between a donor and the patient.
TLI (total lymphoid irradiation) - Radiation treatments given to the parts of the body where most of the lymphatic system is located.
Toxicity - A word used to describe the side effects caused by a medication.
Toxins - Poisonous substances; may be produced by germs.
Trachea - The windpipe.
Transfusion - A procedure in which a person is given an infusion of whole blood or parts of blood, such as red blood cells or platelets. The blood may be donated by another person or it may have been taken from the patient earlier and stored until needed. Also called a blood transfusion.
Transfusion reaction - An allergic response to blood products. Symptoms include hives, chills, or headaches.
Tumor - An abnormal lump or mass of tissue. Tumors can be benign (not cancerous) or malignant (cancerous).
Ulcer - A wearing away of normal tissues. It can be from corrosive chemicals (e.g., acids), infection, impaired circulation, or cancer. It can cause bleeding.
Ultrasound - An imaging method that uses sound waves to outline a part of your body. It can be done to any part of the body. A tumor or infection can be monitored this way.
Unpasteurized - Relating to perishable food that has not been pasteurized, i.e., heat treated to kill potentially harmful microbes.
Urinalysis - The process by which your urine is examined for various factors.
Urinary tract - The organs that have to do with the production and elimination of urine, i.e., kidneys, bladder, ureters, and urethra.
Varicella - Chicken pox, an infection caused by a virus. Children with cancer may have a problem with this infection if they have not had it before.
Vein - A blood vessel carrying blood from your tissues towards your heart and lungs. Veins are used to draw blood samples and administer IV liquids because blood in veins is not under pressure.
Veno-occlusive disease (VOD) - A disease caused by a block in the flow of blood in the liver. It results in weight gain, an enlarged liver, and yellowing of the skin. It can cause mild, moderate, or severe liver damage, or death.
Vertigo - Dizziness, especially the feeling that your surroundings are swirling.
Viruses - Measles, mumps, chicken pox, and the common cold.
White blood cells (WBC) - Cells in your blood that are most important in fighting infection. Examples are neutrophils, or “polys”, and lymphocytes, or “lymphs.”
X-ray - A form of radiation that can be used at low levels to produce an image of the body on film. It can be used at high levels to destroy cancer cells.
Zoster - varicella zoster - See shingles.