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Stem Cell Transplant:
A Companion Guide for Breast Cancer Patients

Understanding the Procedure

Making an Informed Decision
Clinical Trials
Choosing a Medical Center
Preparing for the Stem Cell Transplant
The Stem Cell Transplant
Care During Transplant
Continued Recovery Following Transplant
Short-Term Side Effects
Long-Term Side Effects
Role of the Caregiver
Making An Informed Decision
Making the decision to have a stem cell transplant may be an emotionally demanding one for you and your family. It may seem overwhelming. When breast cancer is first diagnosed and treatments are discussed, there is much to learn. Complex medical terms and unfamiliar words make things more confusing. It is common to feel some fear, anxiety, self-pity, anger, or even self-blame. At times, your feelings will fluctuate. Making any decisions may be difficult.

There are no absolute guarantees about the stem cell transplant procedure for breast cancer. Because long-term study results have not yet been compiled, there is no definitive statement about the role of high-dose chemotherapy and stem cell transplant for breast cancer. Some initial studies, however, show good results. Stem cell transplant is a promising new weapon in the battle against breast cancer. In making your decision, approach the subject with your eyes open. Simply stated, you must consider that there is both promise and risk.

As you come to understand the stem cell transplant procedure, you'll be able to make a decision with greater confidence. Because the procedure is still new you need to research, question, and evaluate if it is right for you. In other words, do your homework. Approach the subject with an open mind. Remember that you are not alone in this. Stem cell transplant for breast cancer has become a "national phenomenon" with thousands of women considering it as their treatment choice. Read booklets like this one, talk to others who've been through it, and have frank discussions with your medical team. Enlist family members or friends to assist you.

Keep a notebook to record information. Have a family member or friend with you during discussions with your medical team. They'll provide support in understanding what was said. Don't hesitate to voice your concerns. There are no "dumb" questions. Ask the following when speaking with your physician/or medical team:

  • Is there evidence that this is better than other, less toxic forms of therapy?
  • Am I a candidate for stem cell transplant?
  • What is my prognosis (chance of recovery)?
  • What are the benefits for me?
  • What risks will I face?
  • What are the potential side effects of this procedure?
  • What kind of quality of life can I expect after transplant?
  • What post-treatment changes (physical and psychological) should I expect?
  • What will it mean to my family?
  • How long will I be in the hospital?
  • How long is the outpatient portion of my treatment?
  • Where is the best treatment center for me?
  • Does my insurance cover this procedure?
  • What other expenses should I expect?
  • Should I participate in a clinical trial?
  • What other treatment options could I consider?

Evaluate responses from these questions. If you're doing your own research, remember that general statistics may include all age groups and types of diagnoses. If possible, look for specific answers. Ask directly about relapse-free survival rates for your age group, your illness, and your type of transplant.

You may be searching for statistical validation for your decision. High-dose therapy and stem cell transplant has undergone evaluation over the last two decades. Find reports that are current, understandable, and relate to your stage of disease. Your transplant center should be able to provide this information. In the near future, results of national studies will be available. Additionally, organizations like the Autologous Blood and Marrow Transplant Registry are compiling outcome data from 250 centers performing the procedure. Clinical Trials
Part of making an informed decision involves learning about clinical trials. These are long-term research studies that evaluate promising cancer treatments. Hundreds of women take part in these breast cancer related studies. Clinical research studies are conducted in many forms. These include national studies sponsored by the National Institutes of Health, single institution studies, and cooperative studies between institutions.

Clinical research studies validate new treatments in three phases. Phase I research studies establish optimal dosage. In phase II studies safety and effectiveness are carefully defined. Phase III studies compare and contrast a new treatment with standard treatment. In this phase, women who participate are randomly assigned to receive one treatment or the other.

At the time of this writing, transplant data from breast cancer studies fall into two basic areas. Much of the data relate to studies focusing on cancer which has spread through the body - metastatic disease. Another area of focus is breast cancer (localized to the breast and local lymph glands) which is at high risk for spreading. This is referred to as high-risk primary disease.

Ask your oncologist or contact a medical center to locate where clinical research studies are being conducted. One source for a listing of independent clinical trials is the Physician's Data Query (PDQ). It is a computer database focusing on cancer treatment information. To find out about national studies, call the National Cancer Institute at 800-4-CANCER (See Resource Listing).

Several studies show that women in research studies often do better than women receiving the same treatment outside of the clinical trials. Potential benefits of participation include:

  • Specialized care and adherence to strict protocols
  • Careful monitoring during treatment and close follow-up afterwards
  • Being among the first to benefit from a new treatment
  • Active involvement by making this treatment choice
  • Helping "future" breast cancer patients
  • Treatment expenses may be lessened

Potential drawbacks may include:

  • Unknown side effects
  • May not be right for you
  • Insurance coverage may be inadequate

Understanding clinical trials may help you in making your treatment decision. Next, you'll want to consider choosing a medical center. Choosing A Medical Center
If you've made the decision to have a stem cell transplant, selecting a medical center will be your next step. There are clear advantages to choosing a large, experienced medical center. There may be one near you. If not, you may have to relocate temporarily, and this makes the choice more difficult.

Look for a center with a good track record for transplant. This is a confidence-builder and offers you a sense of security that the staff will be able to handle any unexpected situations that arise. Check the experience of the doctors and nurses in the transplant department. Find out how many stem cell transplants are done each year. Generally you should look for a center that does a substantial number of stem cell transplants annually. Talk with the bone marrow transplant coordinator about the center's program and what it has to offer you.

Choosing a center close to home allows you to remain near family and friends. It tends to be less disruptive. You'll be able to keep a strong support system close at hand. Travel expenses will be saved, and you'll avoid the hassle of moving to an unfamiliar place. You may already be acquainted with the doctors and staff at the local center.

If you lack confidence in the hospital near you, or if there is no medical center close to home that does stem cell transplant, continue your search. Ask for referrals, find out where clinical trials are being conducted that may apply to your circumstances, and talk to women who have had the procedure (see Resource Listing). Work with your physician to find the best place for you and your family. If you select a center far from home ask about lodging arrangements. Consult your insurance company regarding coverage at other hospitals. Contact the Blood and Marrow Transplant Newsletter for information on different BMT centers (see Resource Listing). If possible, visit the center.

This work can be tedious and time consuming. Sometimes getting answers to your questions may be difficult and frustrating, since some centers are reluctant to disclose information without first seeing you for a consult. Consider recruiting friends or your physician to help you in this task. Form a team to achieve this goal.

If you have access to a computer, you may want to view the Web site of a particular medical center. This is another way to get information (see Resource Listing).

Ask the following questions to narrow your search and help provide confidence in your choice.

  • Does the hospital specialize in cancer treatment? Is it affiliated with a university or teaching program?
  • What kind of experience do the physicians and nurses have with transplant?
  • How many stem cell transplants has the center done this year?
  • Does the center have experience with current treatments like newer drugs or higher doses?
  • Is the center conducting any breast cancer or stem cell research studies?
  • If there are unusual transplant circumstances is the center equipped to handle them?
  • Will I have a team of physicians or just one who will oversee my care?
  • Can I receive my early chemotherapy close to home (if going to a distant center)?
  • Is the transplant also done on an outpatient basis?
  • What kind of follow-up program does the center have?
  • What happens if there are complications for an outpatient?
  • Are support services available for patients and families?
  • Does staff help with the emotional needs of the patient?
  • What is the visitor policy?
  • Are there previous stem cell transplant patients to speak with?
  • What kind of lodging is available for family or caregivers? Cost?
  • Will the center accept my insurance?
  • If my insurance is denied will hospital staff assist me in appealing it?

Preparing for the Stem Cell Transplant
Prior to the stem cell transplant, you'll undergo some laboratory and diagnostic tests. This is to make certain that you're in good shape for the stem cell transplant and to determine the extent of your disease. Before your hospital admission for transplant, you'll undergo an outpatient procedure, sometimes under anesthesia, to insert a thin, flexible tube into your chest. It'll be placed into the large vein, just above the heart. The tube, called a
central line or central venous catheter will remain in place during the transplant and for as long as you need it afterwards. The catheter makes it possible for blood samples to be drawn, drugs to be given, stem cells to be collected, and the actual transplant to occur with little discomfort. Because one end of the catheter is outside the chest it must be kept clean to avoid infection. You'll be instructed how to care for your catheter.

The Stem Cell Transplant
The next step in the procedure involves collecting the actual stem cells. They are collected from your circulating blood. This painless process is called
stem cell retrieval (apheresis or "harvest"). You'll be injected with drugs designed to mobilize the stem cells from the bone marrow into the bloodstream. You'll take these drugs before and during the stem cell retrieval. They are called factors or colony stimulating factors. Some patients receive a combination of chemotherapy and the growth factor to increase cell numbers. Once there are enough stem cells produced they are collected. Blood is withdrawn from your arm or central venous catheter and circulated through a machine that separates blood cells. Stem cells are removed and the remainder of the blood cells are returned to you. This outpatient process takes about two to four hours a day. The process is repeated for about three days or until enough stem cells are collected. Patients usually tolerate this procedure well. During apheresis some patients report numbness or tingling in the fingers or toes, hand or leg cramps, dizziness, chills or lightheadedness. Each of these is easily corrected. After this procedure is completed and enough stem cells are collected, they are frozen and stored for future reinfusion.

The next step in the process is called conditioning or high-dose chemotherapy. Its purpose is to destroy cancer cells in the body more effectively than is possible with standard doses of chemotherapy. Conditioning involves receiving a combination of chemotherapy in high doses and/or radiation. The general sequence of treatment will vary slightly from center to center. At some hospitals the first few days of conditioning may be done as an outpatient. At others you will be admitted to the hospital. Generally taking 5 to 10 days, conditioning is completed one or two days prior to the reinfusion (returning) of your stem cells.

These doses of chemotherapy are much higher than you have received before. Your physician will discuss the drugs being administered. You will rest for a day or so after the high-dose chemotherapy. When the drugs are gone from the body, the stem cells will be returned. Once again the central line or catheter is used. The stem cells, taken from you earlier and stored, are made available. They are thawed in a warm saline solution. Slowly, the cells are reinfused into your bloodstream. You may develop a bad taste in your mouth during this time due to a preservative used in protecting the frozen cells. Some patients report that it tastes similar to garlic or oysters. Others report a metallic-type taste. Try sucking on a hard candy at this time. Although you are not sedated during the reinfusion, you may wish to rest or sleep during the procedure. If you choose, family or friends may stay with you during the reinfusion.

Medications are used to minimize side effects from the chemotherapy such as nausea, vomiting, and diarrhea. You may expect to experience poor appetite, hair loss, and fatigue. These side effects are temporary, lasting from a few days to a few months (see Short-Term Side Effects).

Because the high-dose chemotherapy dramatically lowers the blood count, the risk of infection increases. This is referred to as being immunocompromised. The medical staff will watch you carefully. They'll check for mouth sores, sinus infections, skin conditions, coughs, and urinary problems. You'll be asked to report any unusual changes or fever. Antibiotics are commonly needed to get you through this low immunity period.

You'll begin to feel better as your white blood cell count increases and returns to normal. For many women having a stem cell transplant, this is generally about nine or ten days. About two weeks after the rescue, platelet counts will also return to normal. You can expect to have several outpatient clinic visits in the weeks following transplant. Care During Transplant
Increasingly, the standard protocols for stem cell transplant using well established treatments, are being combined with outpatient care. You may receive part of your treatment in the hospital and part of it as an outpatient. Extended hospital stays of 20 to 21 days, once considered mandatory for transplant, have been replaced by shorter stays of 8 to 9 days. This allows you and your caregiver to move to nearby lodging more quickly. Each day you'll return to the hospital for outpatient treatment.

Much of your transplant-related care may now be done out of the hospital. This living arrangement is more "home-like" than the hospital. You're given a greater sense of control and may feel less like a sick patient when returning to your apartment at the end of a day. Wearing your own clothes instead of hospital gowns is a welcomed perk. Some patients express concern about the risk of infection while out of the hospital. There is no significantly greater risk of infection in the outpatient setting. In fact, it may actually be safer away from hospital organisms.

While you are an outpatient you will require a caregiver(s) 24 hours per day (see Role of the Caregiver). This is a big job. However, most friends or relatives are willing to assume this responsibility. For some women, there may be no one readily available to serve in this role. When this is the case, it may influence where and how post-transplant care is given. Sometimes full inpatient care may be the best option.

If your transplant center does not have a lodging facility nearby, and you are still asked to consider outpatient treatment, pose the following questions:

  • What happens when complications occur?
  • Is there access to a transplant physician 24 hours a day, 7 days a week?
  • Are visiting nurses used for outpatient care?

Be concerned about the medical center's quality of care and the availability of all kinds of services when considering outpatient treatment. Let this information determine where you have your transplant, not whether or not it is done on an outpatient basis. Continued Recovery Following Transplant
The next phase is the transition to a more normal life. It is time to return to your home. You'll be feeling somewhat stronger. Most women look forward to leaving the treatment center environment with joy and anticipation. This happiness, however, may be mixed with a sense of fear and anxiety. Sometimes the transition is not easy. Things were taken care of for you at the hospital. Responsibility for your care is gradually being given back. As previous family demands will continue be prepared to delegate them to others (see
Role of the Caregiver). You now will be expected to make occasional follow-up visits to the transplant center. What kind of timetable can you expect for return visits? As you recover, your visits will decrease. Most health concerns will lessen over time.

Although you will gradually return to normal activities, your immune system is still affected by the transplant. Because the body is less able to defend itself against infection, antibiotics may be necessary. To help prevent infection, wash your hands often. Wash before eating and handling foods, taking medication, and after using the bathroom. Use special antibacterial soaps. Your medical team will instruct you about the do's and don'ts during the early post-transplant period. These may include meal preparation, care of young children, and other issues. Some general suggestions may include avoiding the following: others who are obviously sick, molds and working with dirt, smoke and aerosol sprays, or certain foods. Ask someone else to take care of your pets. Short-Term Side Effects
High-dose chemotherapy is stressful on organs of the body, including the heart, lung, liver, kidney, and digestive system. Side effects of high-dose chemotherapy will vary according to the type of drugs used. Immediate side effects include nausea and vomiting. Mouth sores, loss of appetite, hair loss, fatigue, bleeding, memory problems, and bone pain are common short-term side effects.

It is normal to feel anxious about these possible side effects of treatment. Most are temporary and reversible. If you feel extremely anxious, speak to a counselor at the bone marrow transplant center.

Nausea and Vomiting
These are common side effects of chemotherapy. They usually decrease in severity in the days following chemotherapy. Some patients never experience them at all. Severe anxiety will make nausea and vomiting worse. For this reason, relaxation techniques become very important. The good news is if you do experience nausea or vomiting, there are ways to control it. Ask your physician for medication. Other suggestions might include eating frequent, small meals; eating slowly; sitting quietly after a meal; avoiding sweet or spicy foods; choosing bland, low fat foods; serving foods at room temperature or cold; and avoiding foods with strong odors.

Mouth Sores
These may occur soon after chemotherapy. Your mouth may be reddened, sore, and small white patches may appear. Avoid anything that might be irritating such as acidic, spicy, or hot foods. No alcohol or tobacco products should be used. Increase fluid like apple juice to avoid dryness. Brush your teeth gently after meals and before bedtime. Ask your physician for medication if mouth sores appear. There are effective treatments.

Loss of Appetite
A loss of appetite may be a byproduct of the chemotherapy, radiation, antibiotics, or illness. It is not always easy to stay well nourished during chemotherapy. A hospital dietitian may offer you nutrition supplements if eating is difficult. Good nutrition is very important to your recovery. Its role is to help your body build new cells while increasing strength and energy levels. If you've lost your normal appetite, try to eat frequent small meals. Cold foods may taste better. Try high calorie drinks, like milkshakes instead of water. Make meals enjoyable by socializing. Use plastic utensils, if you have a metallic taste in your mouth. Brush your teeth or rinse your mouth before eating. If you develop a dislike for meat, substitute chicken, fish, or eggs.

Hair Loss
Hair loss or
alopecia is a result of the chemotherapy. It usually affects the hair on your head. Eyebrows, eyelashes, pubic, and underarm hair may be affected as well. Hair loss depends on the drugs used in chemotherapy. It usually happens 2 to 3 weeks after the first treatment. It is temporary and when it grows back it may be thicker, wavier, or darker. You may wish to get a short haircut just prior to treatment. Try a pH-balanced shampoo for gentleness. Baby powder on the neck and back reduces itching from hair loss. Mineral oil or soothing creams will help with scalp irritations. If a wig interests you, have yourself fitted prior to treatment so it will match your natural hair color. Some women report the sensation of coldness with hair loss. Wearing turbans or a favorite hat will help contain body heat.

Fatigue
Chemotherapy affects the production of red blood cells. When your red blood cell count is low a condition called anemia occurs. The result is that the tissues and organs do not receive enough oxygen. You may feel tired, dizzy, chilly, or become short of breath. Headache or a rapid heartbeat are symptoms. Your skin may appear pale. Inform your physician. Blood transfusions may help correct this condition. Take frequent naps. Save your energy. Move slowly from one position to another.

Bleeding
Platelets help your blood to clot. They are greatly reduced after treatment. When thrombocytopenia or a decrease in platelet count occurs, there is a potential for bleeding. You'll notice things like easy bruising, blood in the urine or sputum, or little purple-red blood blisters under the skin. Although you'll be under close scrutiny, consult your physician if you notice any of the above. Protect yourself against bruising or falls. Don't lift heavy objects. Avoid dental floss. Use an emery board to trim nails instead of a clipper.

Side Effects of Growth Factor Drugs
Some common side effects include rash, fever, moderate bone or muscle pain, insomnia, headache, or chills. These disappear when the drugs are stopped. Long-Term Side Effects
Some potential long-term side effects for women having stem cell transplantation include self-image, premature menopause, neuropathy, shingles, and relapse and secondary cancers. These are, for the most part, related to the conditioning phase of high-dose chemotherapy and radiation.

Self-Image
You'll be facing significant changes in self-image. It is difficult to predict how you will react as each woman approaches them differently. Some immediate issues will include hair loss, and possible weight change due to medications. The presence of a chest catheter and the scar it leaves is another body-image factor. If you have had a mastectomy, you may still be adjusting after surgery. There may also be some skin and nail changes following treatment.

Other self-image issues may include a generalized sense of loss. You may feel a "difficult to describe" loss of the woman you once were. You may fear that you'll never be the same again. Your energy level, something taken for granted before, now may be viewed as some-thing that is lost. Your place within the family dynamics may be changing as well from caregiver to receiver of care. If you were employed prior to your transplant and are now unable to return to work, your feelings of not being productive may surface. This status change may be felt as a loss. You may generally feel more vulnerable to many things, including a strong fear of relapse. Feeling less control over events in your life is common. All these feelings are normal. Communicating them throughout the entire experience is very important. Talk about how you feel. Speak with others who've been through this experience. Hospital counselors, private psychotherapy sessions, or empathetic family and friends can be helpful in sorting out feelings. There may be some losses but there will also be gains.

Premature Menopause
Breast cancer treatments often produce an early menopause. Chemically-induced menopause is the result of chemotherapy during treatment. Your body no longer produces the same amount of female hormones. Symptoms that may occur are absence of menstrual periods; hot flashes; weight gain; mood swings; and vaginal dryness, itching, and loss of elasticity. There are concerns of bone loss and heart disease. Most experts would discourage hormone replacement at least in the early years post-transplant.

There are often recommendations to decrease discomfort and ease the symptoms of menopause. Dietary supplements, such as calcium and vitamin D, as well as exercise may help prevent bone loss. Ask your physician about other ways to manage menopausal changes.

Neuropathy
Neuropathy is a result of the chemotherapy. It is a condition of the nerves that causes tingling, numbness, or a change in sensation. Usually involving the hands and feet, cases vary from mild to severe. Many women having a stem cell transplant never experience it at all.

Shingles
A significant number of women will experience shingles, a reactivation of the herpes zoster (chicken pox) virus. It may occur any time after transplant, but it generally occurs within the first six months. This is due to your weakened immune system. Report any rash or unexplained pain to your physician. Early start of medication may reduce discomfort and possibly serious complications of shingles.

Relapse and Secondary Cancers
Some women may have their disease return even after transplant. In a small number of women, a different malignancy may occur. This may be due to the chemotherapy used prior to transplant. Or it may be the appearance of a cancer that would have occurred anyway. If this happens you and your physician will discuss treatment options.
Role of the Caregiver
Shortly after making the decision to undergo a stem cell transplant, you'll be asked to choose a person(s) to serve as your caregiver. This person will be with you during your hospitalization and afterward for outpatient care. It is an important decision. Admission to the hospital may be delayed if caregiver arrangements have not been finalized. Enlist several close relatives or friends to serve in this role. The reasons for having more than one include:

Decide who your caregivers will be. Use the following basic criteria: Choose someone you feel close to and who cares for you deeply. Choose someone who is comfortable in a hospital setting. Choose someone who handles stress well.

There are a number of tasks for a caregiver. Some responsibilities include:

  • Providing emotional support
  • Helping with medications
  • Providing hands-on care during and post-hospitalization
  • Communicating with the hospital staff
  • Gathering information
  • Keeping family and friends up to date
  • Preparing meals and housekeeping post-transplant
  • Providing transportation to and from treatment center

You and your caregivers will receive extensive instructions. The commitment and proper training of the caregiver is critical to the success of the outpatient program. After the transplant and during the outpatient stay at a lodging facility, the caregiver's tasks will specifically include taking care of your catheter, keeping records of what your fluid intake and output are, checking your vital signs like blood pressure, and helping with meals. They will keep a record or diary of daily care routines. They are taught to recognize adverse effects and know when to contact the physician in an emergency. Your dietary concerns are part of their responsibilities. They'll learn what to do if your blood counts are very low. They will offer you frequent emotional support and encouragement. Caregivers will keep in close contact with your medical team throughout. Specific national organizations offer assistance to caregivers (see Resource Listing).

Back to Companion Guide Main page


Table of Contents

Acknowledgements

Introduction and Overview

Understanding the Procedure

Coping with Feelings

Considering Other Issues

Resource Listing and Glossary

Updates and New Developments

 

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