This four-part series is written by Edward Agura, MD, an advisory panel member for the Cancer.Net Editorial Board. Dr. Agura is Director of the Program in Blood and Marrow Transplant at Baylor University Medical Center in Dallas, Texas.

This is the last in a four-part series of articles on bone marrow and stem cell transplantation. This article will provide you with answers to some common questions regarding bone marrow and stem cell transplantation.

Q: Do I need a transplant? Why?

A: Transplantation is rarely the only option for treatment. However, if you have cancer that has not gone away with one or two types of other treatment, and your cancer is a type that can be cured, transplant treatment may be beneficial. Transplantation is a more powerful treatment and can still cure cancer after conventional therapies fail. The only way to know for sure is to ask a doctor who specializes in transplantation. Your transplant consultation will give you a thorough explanation of all available treatment options and will discuss the benefits and risks of each option.

Q: Can my own doctor do the transplant at home?

A: Probably not. Transplantation should be done by oncology specialists who have developed a special expertise in transplant oncology. They typically work at large medical centers. Your doctor needs to send you to such a specialist for a consultation. This is very important to do, even if it is some distance from home. Your insurance benefits may determine where you must go for consultation and treatment.

Q: Do I need a donor? Why?

A: Transplant treatment can only be done with healthy blood stem cells. If the source of these healthy stem cells is another person (usually a sibling), it is called an allogeneic (ALLO) transplant. If you are able to provide these stem cells for yourself, it is called an autologous (AUTO) transplant. Whether you can be your own donor depends on whether you have healthy, cancer-free marrow. The best way to determine this is with a bone marrow biopsy (also known as a bone marrow aspiration). At the time of consultation, your transplant doctor will discuss the options of ALLO versus AUTO transplant.

Q: Where would I have the transplant done?

A: You should choose a place where this type of procedure is done often—at least 20 times per year. For comparison, the most experienced U.S. centers perform more than 500 bone marrow transplants per year. Some centers perform only AUTO transplants; larger centers perform both AUTOs and ALLOs. Be sure that your consultation is with a specialist who is experienced in both AUTOs and ALLOs, so he or she can give you the pros and cons of each approach. However, many patients choose a center based on proximity to home and family (the process can take months to years) or based on a center's published results or for special treatment options (for example, outpatient transplants or mini-transplants) not available at all centers.

Most U.S. cities with a population more than 500,000 have a medical center that offers transplantation. A listing of larger U.S. transplant centers accredited by FACT (Foundation for the Accreditation of Cellular Therapy) can be found at www.factwebsite.org. Consider the experience of the teams in the center when you choose a center. It is reasonable to ask how many transplants have been performed at that center during the previous year. Your insurance company may direct you to a particular center for reasons of quality, finance, or some combination of the two. Ask your insurer if they have assigned a transplant case manager, and call him or her to discuss your care.

Q: Are all cancer centers the same?

A: Generally speaking, most transplant centers have similar results for the cancers they treat commonly: leukemia, lymphoma, and myeloma. Transplant centers are required to report their results to insurance companies; some make their results public. Talk with your insurance company's transplant case manager to see if he or she may be a source of comparison information. While there are no public comparisons for AUTO transplants, a comparison between centers performing the more complex ALLO transplant is available by contacting the National Marrow Donor Program (NMDP).

Q: How long does a transplant take?

A: An AUTO transplant requires about four to six weeks, most of it to be spent staying at or nearby the transplant center. Hospitalization may or may not be required. Longer-term follow-up at home will continue on a regular basis for two to five years.

An ALLO transplant takes about three months to be spent staying at or nearby the transplant center, with longer-term follow-up at home and with return visits to the transplant center on a regular basis for two to five years. Hospitalization may be required for several weeks, sometimes for months.

Q: Do I have to be in the hospital the whole time?

A: No. Most transplant centers are able to offer some or all of the transplant procedure as outpatient treatment. Such centers offer nearby housing and a seven-day-a-week outpatient clinic. Outpatient care offers the patient the advantages of improved mobility, more comfort, and possibly better nutritional support. Concerns about infection occur in both the hospital and in the outpatient setting, so it is important to talk with your health-care team about how to reduce infection risk in either location. It is still possible to limit time in the hospital, even if the center does not offer the outpatient clinic.

Q: Will I be away from home?

A: Most likely, yes, unless you live near a large center. You may be directed to such a center by your doctor or your insurance company, or you may decide to select one on your own with help from your health-care team. Regardless, plan on spending some time away from home. The amount of time depends on the type of transplant you are having. Patients receiving an AUTO transplant are away from home about one month; patients receiving an ALLO are away for two to three months.

Q: Will I be able to work during or after the procedure?

A: No, at first, and yes, eventually. Transplantation is a time-consuming process, requiring many days and weeks in a row of full commitment. Both physical and mental energy will be fully concentrated on the transplantation and recovery. If necessary, working remotely on a laptop computer may be possible; work with your doctor and employer to explore this possibility. Once the procedure is done, the doctor will clear you to return to work. Most people return to their previous jobs. But, you will want to start slowly. Transplant treatment is exhausting. Everyone discovers a "new level of normal" in the post-transplant recovery period. Usually this means a lessened ability to expend physical effort and sometimes mental effort as well. Take it easy for some months following a transplant.

Q: Will it hurt?

A: Transplant treatment itself is not painful, but side effects can cause varying levels of discomfort. Individual procedures (such as bone marrow tests) may cause pain, but usually this is temporary, lasting minutes. Chemotherapy-related side effects, such as nausea, may occur but can now be well-controlled with medications for most patients. Gastrointestinal side effects, such as mouth and throat sores, upset stomach, and diarrhea, are also common, but these typically last only for a few days and can be treated with medication to make the patient more comfortable. A new medication is available to prevent mucositis (mouth sores). Ask your doctor for more information.

Q: What are the risks? What are the benefits?

A: A risk-benefit analysis is something you decide for yourself, based on many personal factors, such as your approach to life, and what you have to gain or lose. Two patients, with identical diseases with identical transplant options, may come to opposite conclusions about whether a transplant treatment is right for them. It is a decision best reached in discussions with several individuals including the transplant doctor, your spouse or partner, other caregivers, family, and friends. However, it is important to keep in mind that the biggest long-term risk will always be the illness that brought you to a transplant center in the first place. In many cases, the transplant offers a curative option. This is often easy for patients to forget, as they focus on the specifics and the temporary side effects of transplant treatment.

Q: How much will the transplant cost?

A: Modern cancer care is expensive; transplant treatment is no exception. While insurance companies usually pay for transplant treatment, out-of-pocket expenses must be considered as well. Insurance deductibles, medication co-pays, clinic visit co-pays, travel, and housing are among the top out-of-pocket expenses. These expenses can add up when the treatment goes on for days, weeks, and even months.

Total transplant costs vary widely, but they are mostly covered by insurance. The most important factor is the stem cell source: ALLOs are twice the price of AUTOs. Other factors include the amount of hospitalization and whether there are complications. Private and government insurance will, in most cases, pay the bulk of the expenses.

Out-of-pocket expenses also vary widely. The biggest factor is often the quantity and duration of oral medications used in the post-transplant period. Again, ALLOs use a great deal more than AUTOs. Transplant drugs, such as antibiotics and immunosuppressives, are expensive. Discuss this with your transplant team during the consultation.

Insurance case managers and transplant center social workers are some of the people who can provide you with specific information on the cost of the transplant and related expenses and your exact coverage. Ask how much your insurance will pay and how much you are responsible to pay. Collect information. Write it down. Stay organized.

Keeping a daily diary of all medical appointments, tests, and procedures is crucial to understanding and sorting through bills. Carry a notebook and pen with you. Write down the date and specific details for each procedure, test, and visit that happens. For more information on financial resources, read the Cancer.Net Feature: Financial Support Resources.

Q: What should I be aware of after a transplant?

A: The reality of all types of cancer treatment, whether it is surgery, chemotherapy, radiation, or bone marrow transplantation, is that some parts of the body are irreversibly changed in an effort to achieve a cure. Several permanent changes may occur after a bone marrow transplant, summarized below. Whether these changes occur at all, or whether they are mild, moderate, or serious, depends on many factors including the patient's age, the donor type and match grade, and partly on the type and strength of the transplant treatments. It is not possible to predict whether or when these changes will occur in an individual patient.

Cataracts: Blurred vision, first noticed when staring at a bright light like a streetlamp. They occur in most patients, regardless of transplant type, within 20 years of the transplant. They occur gradually (over a period of months to years), are painless, and are surgically correctible.

Infertility: Inability to have children. Infertility occurs in many but not all patients. Some younger patients regain fertility, but not all do. Fertility options, including sperm/egg storage, should be considered prior to transplant treatment if the patient is concerned about his or her ability to have children in the future.

Reduced strength and energy level: This is a very common problem during recovery. Strength and energy often return at the same pace as health returns. Physical therapy and exercise help greatly.

Chronic graft versus host disease (CGVHD): This potential problem can only affect those patients who have had an ALLO transplant. It does not occur in all patients and has many degrees of severity and types of treatment. CGVHD is caused by an ongoing attack by the donated bone marrow on the patient's body affecting skin, eyes, mouth, joints, and liver. This can cause a variety of side effects. It is treatable by medications. CGVHD is a two-sided sword: while CGVHD may cause chronic illness, it also fights cancer and prevents cancer recurrence.

Q: How will I know when I am cured? When will the transplant be considered a success?

A: This is one of the most important questions a patient can ask. The answer is that success comes in stages. Early success is measured by blood count recovery and the healing of side effects. For all types of transplant, this takes about one month. For patients who have ALLO transplants, blood and bone marrow tests are done to measure the percentage of donor cells. A good result is 80% to 90% donor cells by 30 days.

A second, early measure of success is disappearance of the cancer. For leukemia, disappearance is measured by blood and bone marrow tests; for lymphomas, computed tomography (CT) and positron emission tomography (PET) scanning are used. A good result is disappearance of all previous abnormalities within 30 to 60 days after the transplant. For myeloma, a combination of blood tests and x-rays are used.

The ultimate measure of success is cure of the disease, and patients may be confused about when and how this is determined. Remission is the word doctors use to say, "the cancer is gone." They usually say this after a series of tests (blood, bone marrow, and scans) have shown no signs of the cancer. Many doctors do not use the word cure because there is always a risk, even if extremely small, the cancer could return at some point in the future.

Such cautious phrasing is borne from knowing that even the best medical test cannot tell for sure if a cancer has been completely eliminated. Cancer cells are tiny; they can go undetected. Consequently, patients must be prepared to "wait it out"–to undergo an observation period and repeated testing to verify the cancer is gone.

Eventually, the watching-and-waiting period ends, and the cancer is considered cured. This observation period for most cancers treated with transplantation is about two years. Are there exceptions? Yes, but they are rare.

Additional Resources

Bone Marrow and Cord Blood Donation from the U.S. Department of Health and Human Services

More Information

Part I: Understanding Bone Marrow and Stem Cell Transplantation

Part II: Bone Marrow and Stem Cell Transplantation: Special types of transplantation

Part III: Side Effects of Bone Marrow and Stem Cell Transplantation

Donating Bone Marrow

Last Updated: June 06, 2007