Welcome to our Autologous Stem Cell Transplant program at Memorial Sloan Kettering Cancer Center (MSKCC). You and your family will spend a lot of time with us in the weeks to come. We want it to be as comfortable as possible. This booklet will help you learn more about autologous stem cell transplantation and why you will need special care.
Before and during your transplant, you will learn how you and your family can help with your care. Your doctors and nurses will review this booklet with you and answer any questions you have. Your social worker will also talk with you and your family.
The Service works as a team. Your doctor, the one you see in the clinic, will be in charge of your care throughout your treatment. However, your doctor may not be the one to manage your day-to-day care while you are in the hospital. Attending doctors rotate on the inpatient unit. One attending will be responsible for your care for 2 weeks before another attending takes over. Any important decisions are made with your doctor.
Fellows, nurse practitioners, hospitalists and house staff are also partners in your care. The fellow is an internist doing special training in cancer. A nurse practitioner is a nurse who has an advanced degree in an area of care. This nurse practitioner can take patient histories, do physical exams, and prescribe treatments and medicine. He or she can also provide medical care with the doctors. The hospitalist is a doctor who only sees patients in the hospital. He or she will cover the unit at night. House staff are doctors who are completing their residency. They work under the supervision of the fellows and attending doctors. While you are here, you will come to know all of the members of your team. You can always contact your doctor if you have any questions. A team of primary nurses will be responsible for your day-to-day nursing care.
Bone marrow is found in the spaces in the center of the long bones in your body. Blood cells are made in the bone marrow: white blood cells (WBC) fight infection; red blood cells (RBC) carry oxygen; and platelets (PLT) help form clots to prevent bleeding. Stem cells are blood cells that have not yet become a specific kind of blood cell. All blood cells begin as stem cells; thus, by transplanting stem cells we can regenerate your blood cell forming ability. Stem cells tend to remain in the bone marrow, where they can become any type of blood cell the body needs, but some go into general circulation in the blood vessels.
Autologous Stem Cell Transplant
Autologous means “from yourself.” Stem cells will form your new bone marrow after you have been treated. The stem cells in your blood are collected (harvested) before you are treated with high-dose chemotherapy called the “conditioning regimen.” We call this stem cell harvesting. You will have injections of G-CSF to help your body make more stem cells.
Stem cell harvesting is done in the Blood Donor Room. It is very similar to giving blood. You will sit in a chair or lie in a bed and can read or bring music to listen to. It takes three to four hours for each collection. Several harvesting procedures (1-5) are usually required to get enough stem cells to support an autologous stem cell transplant.
Why You Need an Autologous Stem Cell Transplant
Your type of cancer responds to high doses of chemotherapy, radiation, or both. A side effect of these is that your bone marrow will be wiped out. When your treatments are finished, the stem cells will be given back to you (“transplanted”) through your catheter. The stem cells will allow your bone marrow to again produce blood cells. The stem cell infusion takes 15 to 30 minutes. It is very much like having a blood transfusion.
Stem cell transplants are used to rescue patients' bone marrow after treatment for many forms of cancer. These cancers are often treated differently. Your doctors and nurses will tell you about your treatment.
Relapse of your original disease can occur if the treatments did not destroy all the cancer cells. Some conditions may put a patient at a higher risk for relapse. Your doctor will discuss these with you.
There is no special diet to get ready for your transplant. You do not need to take more vitamins or gain weight. Our dietitians will help you keep your nutritional balance. However, if you are under- or overweight, try to get to your “normal” weight with your doctor's guidance, before admission.
The stem cells are collected by a machine that separates them from your blood. Before the procedure, your doctor or nurse will check the veins in your arms. If the veins are not easy to find, an IV catheter (a small flexible tube) may be inserted in a large vein in your neck or chest after a local anesthetic is injected. The catheter can stay in place for many months. It will be used to draw blood or give you chemotherapy after the harvesting. You will also need it for fluids, IV medicines, and blood transfusions. Broviac®, Hickman®, and Quinton® catheters are brands of long-term IV catheters. The catheter may have two or more branches called lumens. Wear shirts that button or zip in the front or tops with a low collar so that the catheter can be accessed easily throughout your care. If the veins on your arms are easy to find, you may not need a catheter for the harvest.
Blood is drawn from a vein in an arm or one of the lumens of the catheter. It is circulated through the machine. The stem cells are separated from your blood before it is returned to you through the other arm or another lumen on the catheter. One to five visits may be needed to collect enough stem cells.
Most patients have no side effects after the harvesting. They can go back to their regular activities. After your stem cells are harvested, they are frozen and stored until you need them. Before your harvesting, your nurse will give you the fact card, Peripheral Blood Stem Cell Harvesting.
In nearly all cases, patients become infertile after a stem cell transplant. This means you will not be able to have children naturally. Many patients can take steps before transplant to preserve their fertility.
Men can collect and freeze sperm (sperm banking)
Women may be able to collect eggs. The eggs can be fertilized to create embryos which are then frozen. Or, the eggs themselves can be frozen.
Frozen sperm, embryos, and eggs can be stored for many years. They can be thawed and used in the future, once you are medically cleared and ready to start a family. Tell your doctor or nurse if you want more information about options to preserve your fertility.
Being infertile does not affect your ability to be sexually active. However it is important to use birth control. Sexuality is covered in the booklet you will get before your discharge after transplant.
If radiation is part of your treatment, you will meet with the radiation team before your admission. You will have a planning session called simulation. During this session, you will have a computed tomography (CT) scan and several x-rays. Your chest will also be measured. These are all used to make lead shields to protect your lungs during some of the treatments, as your lungs are sensitive to radiation.
You must have a full dental exam. Any cavities, loose fillings, or gum disease should be taken care of before your transplant. You can have this done by your own dentist or you can see our dentists. If you see your own dentist, please ask him or her to provide a note that you have no dental problems. If there are questions, please ask the dentist to speak with an MSKCC dentist.
Before your treatment starts, you will have some tests that will tell us how your body is functioning. Some of these tests may have been done before your admission. The results of the tests will be used to watch for changes that may occur during or after your treatment.
Electrocardiogram (EKG), echocardiogram (ECHO) or other tests that give information about your heart
Pulmonary function tests (PFT's) - breathing tests that measure lung function
Computed tomography (CT) Scan - an x-ray that provides cross-sectional views and images of soft tissue as well as bone. It also provides measurements of your chest and is used to plan your radiation treatments.
Positron emission tomography (PET) Scan - a scan used to visualize physiologic function in body areas
Bone marrow aspiration - provides a sample of your bone marrow
Skeletal survey - An x-ray of the major bones in your body. This can take a few hours to do.
Your doctor and nurse will explain any other tests that you may need.
Go to the Admissions Center at 1275 York Avenue. You will be taken to your room on the transplant unit. A member of your healthcare team will examine you and take your health history. You will meet the nurse who will be your primary caregiver. Other nurses will help design and carry out your care plan. You may also meet the social worker, dietitian, psychiatrist, nursing assistants, case manager, and unit secretaries. You will be in the hospital three to five weeks. Be sure to ask any questions you have.
If you do not have a catheter already, you may go to have one placed just before your admission to the unit. You will then go from the Surgical Day Hospital to the bed on the transplant unit.
If you will have radiation, it is usually given before chemotherapy. When you finish chemotherapy, you may have one or two days of rest before your transplant. After these treatments, your blood cell counts will be very low. You will be at high risk for infection until your bone marrow begins to make new blood cells. To reduce the risk, all staff and visitors who enter your room will follow special rules. Your doctor and nurse will explain these in detail. It will be 10 - 20 days before your transplanted stem cells have made enough blood cells for you to leave the hospital.
Radiation is given to your whole body, to parts of your body that have many lymph nodes, or to an area that has many cancer cells. Whole body irradiation is called TBI. That stands for total body irradiation. Radiation given to lymph nodes is called TLI for total lymphoid irradiation. The treatments are fractionated. This means that only a part of the total dose is given during each treatment. Each session lasts 10 - 30 minutes. You will have 2 to 3 sessions each day for several days.
Depending on the type and stage of your disease, you may need more radiation to specific parts of your body. The extra radiation is called a “boost.” It depends on your illness. Your transplant doctor and the radiation oncologist will tell you more.
Having a radiation treatment is like having an x-ray. It does not hurt. Do not wear jewelry during radiation therapy. Metal may alter the radiation dose to that area. You and your clothes do not become radioactive during or after the treatments, and your body does not pass the radiation on to other people. If you wear contact lenses, your doctor or nurse will say when you should remove them. Wear your glasses instead.
Do not use any creams, facial or body lotions, oils, or shaving cream in the areas being treated. Use mild soap and warm water to bathe. You can use creams that your radiation nurse will give you.
Your family members can go with you to the Radiation Therapy Department when you have your treatments. They must wait outside the therapy room but can talk to you and see you on a video screen. Music is available in the treatment rooms. You may bring your own music if you prefer. The nurse will tell you more about how the radiation treatment is given and what you will do during the treatments.
High doses of chemotherapy are used to destroy cancer cells. You may receive several chemotherapy drugs before your transplant. Your doctor will tell you more about the drugs that you are going to receive. Your nurse will also give you information about the drugs and their side effects.
As with other treatments, there are side effects with radiation therapy and chemotherapy. You may have some or all of the possible side effects to varying degrees. We do not know which of the side effects you will have and how severe they will be. There may be days when you feel very sick because of the side effects. We can give you medicine to try to help you feel better, but you must tell us how you are feeling. This way, you can help us to care for you. Read the Side Effects Profile Chart below to check which side effects you can expect from your treatment.
Side Effects Profile
A mild skin reaction that looks like a sunburn. It will eventually turn into a tan. This effect is usually temporary. You may also notice that your skin is dry. When your treatments are completed, apply alcohol-free lotions, creams, or oils to help relieve the dryness. If you received radiation boost(s), skin changes in these areas may be more pronounced.
You may have a temporary decrease in the amount of saliva, which results in a dry mouth. This will improve over time.
Changes in the lens of the eye. This can cause cloudy vision. It is rare, but can occur years after treatment. These changes are often mild and do not seriously hurt vision. If dense cataracts form, they can usually be surgically removed.
Low thyroid function can develop months or years after treatment. Your doctor may prescribe an oral thyroid hormone to correct it.
Bone Marrow Suppression
Your blood counts will be low until your transplanted stem cells begin to work. Precautions will be taken to protect you from infections and bleeding.
Gastrointestinal Tract Symptoms
Nausea, vomiting, and diarrhea can occur because treatment destroys normal cells that coat the mouth, stomach, and intestines. You may have painful sores in the mouth, mild to severe pain in the throat or lower part of your food tube, or all of these. These can last some days but they are temporary.
Salivary Gland Symptoms
The salivary glands in front of the ears, under the lower jaw, and on both sides of the floor of the mouth may become tender and swollen for a few days after treatment is over. You may have a temporary decrease in saliva. This will get better with time.
Hair Loss (Alopecia)
Total loss of body hair may occur temporarily. Your hair will start to grow back starting about two to three months after the transplant. The color or texture may change when it grows back.
High-dose treatments may cause the inability to have children. You can be sexually active. Speak with your doctor or nurse about birth control you can use throughout your treatment.
Ask your doctor or nurse about sperm banking.
Sperm production may become decreased or absent.
Ask your doctor about freezing your eggs (ova).
Your periods may become spotty or stop altogether. You could need hormone replacement.
Risk of Another Cancer
A side effect of radiation and some chemotherapy drugs is risk of a second kind of cancer. This is rare. Ask your doctor more about it.
You will have daily activities before and after your transplant. Precautions will be taken to protect you from germs. Children under the age of 12 are not allowed on the unit. If you have children, ask the social worker about video-assisted options you can use.
Weight and Vital Signs
You will be weighed daily, in the morning. Your blood pressure, temperature, pulse, and breathing will be checked at least every four hours around-the-clock.
Walking in your room and sitting in a chair as often as possible will help keep your lungs and muscles healthy. Each room has stationary bike pedals. They can help keep you active.
Rest and Relaxation
Try to rest and relax. Integrative Medicine offers free yoga, meditation, massage, and music therapy. These can help you cope. Call (646) 888-0800 for more information. You may bring a calendar, a clock, games, books, crafts, playing cards, music, a cell phone and charger, pajamas, caps, and scarves, etc. from home.
If you bring clothes, make sure they are loose and comfortable and that the tops open in the front for access to your IV catheter. Shoes or slippers must have non-slip soles. The nurse will help you choose things that are best for you during the transplant and tell you how to clean them.
You may not have fresh cut flowers or live plants in your room. They pose a risk of bacterial infection.
During the course of your transplant, you will receive many drugs. They will be given by mouth, through a vein (IV), and on the skin. Some of these are to help prevent complications from treatment and some are to treat problems that result from treatment. Your doctors and nurses will give you information about each drug. They will tell you the reason they are prescribing the drug, how the drug works, and its possible side effects. The nurses will tell you about the chemotherapy and supportive drugs used during your treatment.
Good nutrition is very important before and after your transplant. During the transplant you will likely have little appetite and will eat little. This is expected. If you feel up to it, try to eat and drink in small amounts but do not force yourself if you do not feel well. The dietitian and nurse will tell you which foods are best when you cannot eat as much as you usually do.
You may not feel well enough to eat well-balanced meals. If you are unable to eat or drink for an extended period, the team will consider your need for nutrition through your IV. This is called TPN (total parenteral nutrition). By the time you are discharged from the hospital you will be able to drink enough liquids and may be able to eat small amounts of food.
You will be at a greater risk for infection. While you are in the hospital, you will be placed on a low bacteria diet. It is called a low microbial diet. The nurse and the dietitian will review it with you. Check with your nurse, dietitian, or doctor before bringing in food from home.
The dietitian will plan a diet for you. Eat well-cooked foods that are easy to digest.
Refer to booklet Low Microbial Diet and Safe Food Handling.
After your radiation therapy, chemotherapy, or both, you will have one or more days without treatment. These are called “rest days.” Your doctor and nurse will discuss your treatment schedule with you so you know what to expect.
On the day of transplant, your frozen stem cells will be removed from storage and brought to your room. The stem cells are stored in clear plastic bags that look like a bag of blood. The bags will be placed in a warm water bath to thaw. Once the stem cells are thawed, the nurse practitioner or doctor will infuse them through your IV catheter.
The cells will travel through your bloodstream into your bone marrow space. Here, they engraft and begin to make healthy blood cells. As the bone marrow grows, your blood counts will slowly return to normal. This is called bone marrow engraftment.
You may have some side effects during the infusion. The most common ones are nausea, vomiting, a tickle in your throat, and a cough. You will receive medicine about 30 minutes before your transplant to help reduce these side effects. You may notice a strong, garlic-like taste in your mouth. Your urine, sweat, and skin may also have a garlic-like odor. The scent of fresh lemons helps reduce the odor. The nutrition service will provide lemons. The preservative in the stem cells causes this garlic odor and it will gradually go away over one to two days.
Infection, bleeding, and fatigue can occur while you wait for blood counts to return to normal. You may have infections, bleeding, and fatigue while your blood counts are low.
Bacterial, fungal, and viral infections are serious problems. The risk is especially high right after the transplant. Fever is one sign of infection. If you have a fever, blood and urine cultures will be done and you will have a chest x-ray. You will be given IV antibiotics to help your body fight the infection.
You could also get pneumonia. It can be from a virus, bacteria, radiation, or chemotherapy. Your doctors and nurses will watch you for any signs of it. You will also have regular chest x-rays.
You are at risk for bleeding when your platelet count is low. You will receive platelet transfusions as needed.
Fatigue and Weakness
When your RBC count is low, you may feel tired. Your nurse or nursing assistant will assist you with your daily activities if you need help. Try to walk every day to maintain your muscle tone and strength. You may also receive red blood cell transfusions as needed. These and all other blood products will be irradiated to prevent adverse side effects.
Keeping yourself clean is very important. You will have a routine to clean your skin each day with antibacterial soap. Begin with your upper body, then the middle section, and wash the lower area including your feet last. Pay extra attention to washing your underarms, groin, and the perineal area between the genitals and rectum. These moist areas harbor germs. You may shampoo your scalp with ordinary soap once a day. If you need help, the nurses and nursing assistants will assist you.
After you urinate or move your bowels, wash your buttocks and perineal area with antibacterial soap. You can also use moist wipes. Pat the area dry. Wash your hands well after urinating or moving your bowels and before eating.
Keep the skin around your long-term IV catheter very clean. The dressing that covers and protects it will be changed each week, as long as it is dry and covered. To reduce the chance of infection, do not allow the IV tubing to touch the floor.
It is especially important to take good care of your mouth throughout your hospitalization. Good mouth care can help prevent infections and other complications in your mouth. The nurse will work with you to plan your mouth care routine. Some of the guidelines you must follow are listed below.
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 two hours, depending on how your mouth feels.
Use only the mouthwash that your nurse gives you. Do not use commercial mouthwash or toothpaste. These products irritate and dry the mucous membranes of the mouth and throat.
Use only the toothbrush given to you on the unit or by the MSKCC dental service. You may also use Toothettes® disposable foam sticks.
Do not use dental floss.
Avoid licking your lips. It increases drying and chapping.
Apply a lubricant after mouth care and every two to four hours as needed. This will help keep your lips moist.
To avoid an infection in your mouth, the doctor will prescribe an oral antifungal antibiotic.
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 your mouth feels very painful, your doctor will prescribe medicine for the pain.
You will be in a private room during the critical times of your transplant. Anyone who enters your room must wash their hands well with antibacterial soap or alcohol-based hand gel. Your doctor and nurse will tell you how to protect yourself from germs and infection. They will give you printed instructions on the isolation procedure used in the unit.
Platelets work to prevent and control bleeding. While your platelet count is low, you will have an increased tendency to bleed. The nurse will check your stool and urine routinely for blood. Take these precautions:
Use an electric razor to shave.
Use safety measures to prevent falls or accidents. To protect yourself while walking, wear slippers with non-skid soles.
A complete blood count (CBC) will be done daily to check your white blood cell count, red blood cell count, and platelets. When your blood cell count is below normal, you may need transfusions of red blood cells and platelets. Your family may be asked to donate red blood cells, platelets, or both. The doctors, nurses, and the staff at the Blood Donor Room will tell you more about blood transfusions and when they are necessary.
Patients often need red blood cells and platelets when their counts are too low. We ask family members and friends to donate blood and are grateful when they can do it. Any blood donation helps our patients. When you start treatment, ask a family member to call the Blood Donor program to find out about giving blood. The number is (212) 639-8177. It takes about two hours to donate platelets and about 45 minutes for red blood cells. Donors can call (212) 639-7648 to make an appointment.
Blood donors must:
Be 17 - 75 years of age.
Weigh over 110 pounds (50 kg).
Not have signs of a cold or active allergy at the time of donation.
Not have or have had an illness such as hepatitis, jaundice, cancer, etc.
Call the donor room if they are taking any medicine.
Not take aspirin, or any compound that has aspirin or aspirin-like drugs (ibuprofen, Motrin®, Naprosyn®, Anaprox®, Advil®, Aleve®) within three days before giving blood. It is okay to take acetaminophen (Tylenol® or Anacin 3®).
Not drink alcohol eight hours before donating.
Eat a light meal, but avoid fatty foods before donating.
Engraftment occurs when the bone marrow begins to form the cells that give rise to mature blood cells. About ten days after the transplant, marrow engraftment will be evident as the white cell count starts to rise. Recovery of the red blood cells occurs more slowly. Platelets tend to recover last. The immune system may take 6 to 12 months to recover fully.
As more stem cell transplants are done, changes are made in the treatment plan based on research and experience. These changes aim to decrease complications and to promote the growth of the new marrow. The special care you need when you have a transplant does not change, regardless of the treatment plan.
Some patients have said they feel bored in the room because “there's nothing to do,” or they “are tired of feeling sick” and “can't wait to go home.” Others say they “are anxious and depressed.” It is natural to feel this way. Sometimes it helps to talk. Patience and active participation in your daily care is important in the weeks after your transplant. Talk to your nurse, social worker, chaplain, or doctor about your feelings. Patient-to-patient volunteers, the Patients' Library, Recreation, and the Integrative Medicine Service may also help. A member of the Department of Psychiatry can talk to you and your family or advise the transplant team about medicine that can help. It is important that we work together. You, your family, and all the staff are on the same team to help care for you. Share your concerns with your nurse.
Most people have some distress during the course of treatment. Fear of the disease, treatment, and even the unknown are common and normal. Being in the hospital for a long time, the slow recovery after transplant, and low energy may be frustrating. Dealing with your feelings can help you cope with treatment and feel better. You may want to speak with your social worker. Other services are also available to help you. Patients have taught us over the years some ways that people can cope positively with cancer and feel better as a result. The following are suggestions that might be helpful.
Learning about your illness, transplant, and treatment is one way to decrease fear of the unknown. The transplant can be overwhelming because many things are happening. By making a list of your worries or questions, you can focus on two or three concerns at a time. The team caring for you expects you to have questions and will answer them.
Share Feelings and Thoughts
Sharing how you feel with others and what you think about your transplant is one way to decrease the burden. Some patients find this difficult because they do not want to worry their family and friends. However, not knowing how you feel or how to help may worry them even more. Sharing feelings and thoughts can bring people together at a time of stress. You may also ask your social worker about a support group that may be helpful.
While you are in the hospital, we will try to help you feel comfortable. Sometimes it is best to take things one day at a time. We know that you will be watching each day for the moment when you can go home. The staff will watch and wait with you. Before you go home, your nurse will give you a copy of Returning Home After Your Autologous Transplant. This booklet will help to prepare you to return to your home environment. It will address some common concerns of patients who have had a transplant. We care about you and your family, and we want to help you as much as we can. There are many people available to help you and your family cope. Please share your questions and concerns with us.