Peer support volunteers for the National Bone Marrow Transplant Link talk to thousands of people each year who are considering stem cell transplants. Combining their knowledge with the poignant stories from people who have endured a SCT procedure, the nbmtLink has created several original publications: Resource Guide for Stem Cell Transplant, Including Bone Marrow, Peripheral Blood, and Cord Blood: Friends Helping Friends; Survivors' Guide to a Bone Marrow/Stem Cell Transplant: What to Expect and How to Get Through It; Caregivers' Guide for Bone Marrow/Stem Cell Transplant: Practical Perspectives; and "The New Normal: A Video.

Below are answers to many of the questions that nbmtLink volunteers are asked. Please call the nbmtLink toll free at 800-LINK-BMT or e-mail us if you have questions or just want to talk.

How can I decide if a transplant is right for me?

It is important to weigh all treatment options and have a conversation with your doctor about what treatment is best for you.  It is a good idea to have a consultation with a transplant physician soon after your diagnosis to see if a transplant may be an option for you. A transplant physician can work with your oncologist to recommend the best time for a possible transplant depending on your diagnosis. A transplant physician can help you and your doctor look at all your treatment options and plan ahead since your first treatment may not be a transplant.

What are the different types of transplants available?

The goal of a stem cell transplant is to cure many different types of cancer and disease. The type of transplant you have will depend on who donates the stem cells.

• Autologous transplant—The patient donates his/her own stem cells prior to treatment for reinfusion later.
• Allogeneic related transplant—The person donating the stem cells is a genetically-matched family member (usually a brother or sister).
• Allogeneic unrelated transplant—The person donating the stem cells is not related to the patient.
•Syngeneic transplant—The person donating the stem cells is an identical twin.

Stem cells can be collected from the following sources:
• Bone marrow
• Peripheral blood
• Cord blood

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How much does a transplant typically cost? And how will I pay for all of this?

Understandably, the prospect of a transplant is stressful enough without worrying about finances too. But, the reality is that transplants are costly. Aside from medical costs, there may be additional out-of-pocket expenses. The financial burden on a family may become difficult if advanced planning is neglected. If you can anticipate expenses, you may plan for how they will be met.

The procedure is expensive. Insurance companies vary widely on coverage. It is possible that much of your transplant, if not the entire cost, will be covered. Call your insurer to check on your coverage or have your transplant center make the contact. If your insurer refuses to cover expenses, be persistent and consider speaking with legal counsel or someone with expertise in the insurance field.

Costs may vary depending on your treatment center. Although the center may not be able to quote you an exact dollar amount for your transplant, do request a general estimate for what you can expect to pay. This is especially important if your insurance coverage is limited. In general, transplant costs have declined over the years. This is due, in part, to the increased use of outpatient care. The rise in the number of autologous stem
cell transplants, where donor expenses may be eliminated, is another cost reduction factor. An autologous transplant may range from $50,000 to $100,000 depending on the circumstances. An allogeneic transplant may range from
$150,000 to $200,000.

It’s difficult to predict your expenses after the transplant. Much
will depend on your recovery time, which may range from six months to a year. Your insurance company will probably cover testing and may also cover follow-up visits. However, there are many out-of-pocket expenses. Medications can be very costly, especially if you do not have prescription coverage. Ask about your coverage prior to transplant.

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How do I choose a transplant center?

Selecting a transplant center will be a big decision. Talk to your
doctor and check with the insurance company to learn about your options. Family factors may influence your choice of centers. Foremost, choose a center that has a good amount of experience with your type of disease and in performing transplants. Do your research and ask questions. If possible, visit the medical center before your transplant.

There are distinct advantages to having the transplant at an experienced medical center with an excellent track record. If, however, there is no center near your home, you have concerns about the center’s reported outcomes, or the center has performed too few of the kind of transplant you need, then the choice may be more difficult. Calling the National Marrow Donor Program (NMDP) to get a listing of centers performing unrelated stem cell transplants is an excellent way to get initial information. The NMDP Transplant Center Access Directory
contains phone numbers and addresses of most transplant centers with information about the number and type of transplants performed at each center as well as some statistics about survival rates at each center. Additionally, BMT InfoNet offers a comprehensive listing of transplant centers on its website.

Other important considerations may include insurance coverage, proximity to family, follow up care, and living arrangements should you select a center away from home.

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How do I tell my children about my transplant?

Vital to all areas of transplant is communication. Children
need to receive information that is appropriate to their age and stage of development. Teaching children about your disease and treatment, in words they can understand, helps them cope. Protecting them from information may worsen the situation because they may imagine things to be much worse than they really are. Listen to their questions and answer with reassurance and honesty. Allow your child to express emotions and help him/her to keep a positive attitude.

Some wonderful resources are the pediatric social worker or child life specialist at your treatment center. These professionals have special training in age appropriate
communication with children and in family dynamics.

How do I become a donor or donate cord blood?

Knowing who should and should not be tested as a donor is often a topic of concern. Friends, coworkers and others interested in becoming a stem cell donor may either contact a local donor center or one of the large registries like the
National Marrow Donor Program. These organizations will
be aware of when and where donor drives are occurring. The general criteria for becoming a donor include factors such as general health status, weight, and age. Those who will generally not be able to serve as a stem cell donor include people with a history of severe heart problems, cancer, hepatitis, insulin dependent diabetes, or HIV. Cord blood units undergo a similar screening process. Donors are screened for conditions that would put them at too great a risk to donate as
well as for illnesses that could be harmful to the patient.

Umbilical cord blood is a rich source of stem cells. The umbilical cord stem cells, instead of being discarded, may be removed from the placenta and attached umbilical cord after delivery of a baby. This procedure poses no danger to the mother or child’s health. Some hospitals allow parents the opportunity to donate their child’s umbilical cord blood to an unrelated donor registry. Interested parents should speak with their doctor about this option.

What can I expect as a caregiver?

The Role of the Caregiver
During the transplant process, you will need at least one family member or a friend who can provide you with emotional and physical support. This person is often referred to as a caregiver. In many cases, it will only be possible for you to have one caregiver with you during the week. If this is the case, you may
consider arranging alternate caregiver support during weekends so that the caregiving task does not fall on just one person. Ideally, however, you may be able to arrange to have more than one caregiver as the role can be very demanding.
Even though many people successfully make it through the transplant with only one caregiver, having two or more caregivers is an advantage. This allows each caregiver a time to rest and return to the hospital more refreshed. Since
caregivers may experience a high degree of anxiety, sharing the responsibility of caring for you can serve to alleviate some of the tension. Finally, having more than one caregiver provides a safeguard in the event that a caregiver gets sick
and is unable to be on the transplant unit.

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