PLANNING FOR TRANSPLANT

INFERTILITY

Infertility is a distressing side effect of many transplants. Our goal at Rocky Mountain Blood and Marrow Transplant Program is to provide you and your family with resources and support related to the subject of infertility. This is not a comprehensive list of information, but a beginning to help you start the education process.

What is Infertility?

• By definition, infertility is the inability to start or maintain a pregnancy.


• For women, infertility occurs when the ovaries cannot produce mature eggs. Infertility can also be caused if there is any damage to the reproductive system, which would interfere with an embryo being successfully fertilized or implanted inside the uterus.


• For men, infertility occurs when the testes stop producing sperm cells.

How does chemotherapy affect infertility?

• Chemotherapy can affect sexual organs and can be a cause of infertility.


• Chemotherapy works by killing rapidly dividing cells throughout the body resulting in potential injury to hormones, sperm and egg production.


• It is very difficult to predict who will experience permanent sterility or infertility due to chemotherapy treatments.


• Infertility depends on many factors, including the chemotherapy, the dosage, and age.

Are there other treatments that affect infertility?

• Radiation and surgery also increase your risk for infertility.


• Individual treatment factors such as location and doses of radiation affect the chances of becoming infertile. Total Body Iradiation causes infertility.

It is very important to discuss with your physician, coordinator or nurse any issues regarding infertility, as well as options that are available to you.

Infertility and Cancer Resources
Web Resources:
American Society for Reproductive Medicine.
http://www.asrm.org
• This site has an extensive section for patients with frequently asked questions, booklets and fact sheets that address many infertility issues.

fertileHOPE
http://www.fertilehope.org
• This is a non-profit organization that is dedicated to providing information, support and hope regarding cancer and infertility. They also offer programs of awareness, education, financial assistance, research and support.

Local Resources:
CryoGam (Sperm Banking information)
1-800-473-9601 or 970-667-9901
• There are several offices in the Denver Metro Area. Please call the above number to ask questions or set up an appointment for sperm banking.

Conceptions Reproductive Associates
• Littleton (main) – 1-303-794-0045
• Denver – 1-303-399-6515
• Boulder – 1-303-449-1084

Dr. William Schoolcraft (Infertility Specialist)
• 1-303-788-8300 or 1-303-790-1363

Dr. George Henry (Reproductive Genetics Center)
• 1-303-399-5393

Booklets
American Society for Reproductive Medicine. Husband Insemination. Full-text available online at http://www.asrm.org/Patients/patientbooklets/husbandinsem.pdf

Articles
Redman, J. Bruce. Reproductive Options For Men with Cancer. (Coping; Vol. 15, No. 5, July/August 2001, p. 44).

Reidenbach, Faith. Conceiving Solutions: Fertility and Cancer Treatment. (CURE; Vol.1, No. 4, December 2002, p. 20).

Schover, Leslie R. Reproductive Issues for Cancer Survivors. (Coping; Vol. 17, No.6, November/December 2003, p. 39).

PRE-TRANSPLANT EDUCATION

As a program, we believe it is important for you, as the patient, to be knowledgeable and informed. Stem cell transplantation is complicated: the terminology, the medications used, and the entire process you will go through during transplant. We want you involved in your treatment so we are committed to helping you understand the transplant process. Because people learn differently, we provide education about the transplant process, both verbal and written form: interactive classes, manuals, one-on-one sessions with BMT staff, and computer-based programs.

Education Class
A two-hour patient/caregiver class is held twice a month to help prepare you and your caregivers for the transplant process. It is a program requirement that you and your caregivers attend this class. Registration for the class will be arranged through your transplant coordinator.

The Patient/Caregiver Class is intended to give you a general introduction to transplant and what to expect. Topics include: a general overview of transplant, nutritional guidelines, financial and insurance issues, psychosocial issues, caregiver responsibilities, issues for patients to consider when planning for transplant, and hands-on experience doing central venous catheter (CVC) care.

Manuals
A Patient and Caregiver Education Manual will be given to you by your transplant coordinator if you decide to proceed to transplant. This manual contains detailed information about all aspects of the transplant process. The manual was designed as a resource for you and your family so you can understand what to expect and how to navigate through different aspects of transplant. Some information contained in the manual will be reviewed with you by your transplant coordinator. However, you and your caregivers are also expected to review the information in the manual and ask questions about topics you do not understand.

Staff Education
Informal education about the transplant process will occur regularly with your transplant coordinator. She will review important aspects of the transplant process and is a good resource to address a variety of questions and concerns that arise as you prepare for transplant. Your caregivers may also contact your transplant coordinator for information.

Visits with your transplant physician are also a good opportunity to obtain information about your upcoming transplant and get your questions answered. If you need additional time with your transplant physician, please schedule a follow-up appointment specifically to address your questions and concerns.

Inpatient and outpatient BMT nurses will continue to educate you throughout your transplant about your treatments, side effects, and procedures. If you need intravenous medications or fluids at home, a homecare nurse will meet with you for one-on-one teaching so you or your caregiver are competent to provide these treatments at home.

CAREGIVERS

A transplant is not possible without the support of Caregivers. A Caregiver is usually needed to be with a BMT patient 24 hours per day, seven days per week during certain times of the transplant process. The time commitment for a caregiver can range from 1 week to 3 months or more depending on the type of transplant you receive. Your coordinator will discuss your specific Caregiver requirements. Caregiver duties may include giving medications, providing medical care, providing transportation to and from the clinic, cooking, cleaning, grocery shopping, picking up prescriptions, and handling emergent situations. We rely on Caregivers to relay information about the patient’s physical and emotional well-being. In addition, Caregivers are often responsible for ensuring that changes in the patient’s medications or treatment plan are carried out at home. If you are considering a transplant, you will need to identify who may serve in the role of Caregiver for you during your transplant. Sometimes it is one individual, but often times several people share in the responsibility of providing 24 hour care.

THE BASICS OF STEM CELL DONATION

Donor Identification
The first step in planning for an allogeneic transplant is to find a suitable donor. This is done through the process of Human Leukocyte Antigen (HLA) Typing. People often assume that if their blood type matches, then their HLA types much match, but this is not the case. HLA typing is a molecular laboratory test done off of a blood sample that looks at DNA structure. Since you receive DNA from your parents we look first at any siblings you may have since it is likely (a one in four chance) that you would match one of them. If not, or if you have no siblings, there are unrelated donor registries that can be searched to find potential HLA matched donors.

For potential sibling donors who live in the Denver Metro area the options are to go to the typing lab directly or to facilitate through the transplant coordinator a plan to come to our hospital or clinic to have blood drawn. For siblings living outside the Denver metro area, there are kits that contain the lab tubes needed for the testing. The kit will be sent to your sibling who can then take the tubes to their doctor’s office to have blood drawn. There is no processing needed. The samples need to be sent overnight to the laboratory as directed in the instructions that accompany the kit. The cost of the HLA typing itself will be covered by the transplant recipient’s insurance, but any charges incurred from the office or clinic that draws the blood will be the responsibility of the donor.

Sibling typing is done in two stages. If you and your sibling match after the first level of molecular typing is complete, we will have a second level of molecular typing performed on the original sample. No additional blood will need to be obtained to do this. It is only after this second level that we can truly identify a donor. If your sibling does not match you at the first level, they will not be a suitable candidate to be your donor and therefore no further testing will be done.

If we find that no siblings match, there is always the option of an unrelated donor. Since we will have your typing complete, we will run a preliminary search of the National Marrow Donor Program unrelated donor registry. This is free of charge and gives us an idea of the potential availability of an unrelated donor. If this is the route chosen, we look more in depth at donors on the registry and have samples of their blood sent to our laboratory to confirm HLA typing.

Once a donor has been found for you whether it is related or unrelated, each donor goes through a health history and physical and has comprehensive lab work done to assess their suitability to be a donor. At times the findings from this workup will make a person NOT eligible to donate. Some of the findings include the presence of hepatitis, HIV, blood disorders, etc.

Donation Process
The actual donation process for the related donor requires that he/she be in Denver for 7-10 days. This depends on whether the physician wants to use blood stem cells or marrow stem cells for the transplant. Marrow stem cells are obtained during a surgical procedure under general anesthesia where the marrow cells are “harvested” from the pelvic bones. Blood stem cells are collected by a process called apheresis. For this, the donor undergoes a series of daily Neupogen injections to make the stem cells move from the bone marrow out into the blood stream to be collected by the apheresis process.

Apheresis is the procedure used to collect stem cells from the peripheral blood. This takes place at P/SL Medical Center. The Collection of stem cells takes 1-2 days for approximately 4 hours each morning from 7:00 a.m. to 11:00 a.m. A physician or nurse practitioner will see donors each day prior to being connected to the apheresis machine (cell separating machine). As a donor, your blood will be withdrawn from an intravenous catheter (IV) placed in one of your arms. It is circulated through the machine, which will separate out the stem cells and return the remaining blood back to you via a second IV in your other arm. There is only a small amount of your blood (a little over one cup) in the separator machine at any given time.

There are very few side effects associated with this procedure. The main side effects are:

• Numbness/tingling of the fingers or toes


• Numbness/tingling of the skin, especially the lips


• Feeling very cold


• Nausea


• Muscle cramps

All of theses symptoms can be a sign of low calcium in your blood. This is due to Citrate, a calcium-binding substance used during the collection of your stem cells to prevent your blood from clotting while it is circulating through the machine. We encourage you to eat breakfast prior to donating. If you eat calcium-rich foods such as milk, yogurt, or cheese, some of the symptoms mentioned may be prevented. Alert the apheresis staff if you experience any of the above symptoms or have any other concerns.

During the time you are undergoing apheresis, daily lab tests are done to count the number of stem cells collected. Each patient has a target goal of stem cells to collect from the donor. It may take more than one day to attain this goal. The apheresis staff will notify donors when the target goal has been met. The ideal number of stem cells for transplant is 2 million.

Donated stem cells are most often given to the recipient on the same day they are collected from the donor. Fresh stem cells are viable for 48 hours. In the event that all of the collected stem cells are not needed, the excess cells will be cryopreserved for possible future use.

HOUSING

Your transplant coordinator will discuss your housing needs during transplant. If your home and its location do not meet program requirements, alternate housing during your transplant may be required. The cost of this housing may be covered by your insurance. However, if it is not, this will be your financial responsibility. If you need alternate housing, your transplant coordinator will assist you in finding lodging at discounted rates.

ADVANCE DIRECTIVES

You have a right to make your own healthcare decisions. As your healthcare providers, we would like to honor your wishes regarding your healthcare. Thus, as a program we strongly encourage patients to fill out an advance directive. When you provide instructions, verbally or in writing, as to your wishes regarding future healthcare decisions, it is called an advanced directive. Because there could be a time during the transplant process when you are too sick to think or communicate clearly, advance directives can help to guide your healthcare team and your family as to your healthcare wishes and values.

The two main types of advance directives you should consider filling out before coming to transplant include: 1) living will and 2) medical durable power of attorney. A living will is a document that expresses your wishes and desires regarding artificial life support if you become terminally ill. A medical durable power of attorney appoints someone (for example, a family member, significant other or friend) whom you entrust to express your healthcare wishes if you are unable to do so for yourself. There are different forms to help in creating an advance directive. We can provide you with one such form, The Five Wishes document, for you to use if you wish. If you fill out an advance directive, please provide us with a copy to place in your chart. You should always retain the original.

Although it can be difficult to talk about these issues with family members, it can be invaluable for family members to understand your healthcare wishes and values so they can carry out your wishes if that becomes necessary. The transplant psychologist or social worker will discuss advance directive issues with you and can assist you in filling out the necessary forms.