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Index:
The transplantation process can be broken down into three phases: before treatment, the hospitalization phase during treatment and recovery after treatment.
Before Treatment
Once your doctor has referred you to our facility, you will meet with us in at least two separate visits to determine which course of treatment is best for you. You will also be given a series of medical tests to evaluate the stage of your disease and your overall physical condition.
Initial Consultation
On your first visit to Morgantown, you will meet with one of the physicians from the transplant program, tour our facilities and meet other members of the transplant team.
At this time we will collect a medical history, including information about previous treatments, childhood diseases (measles, mumps, chickenpox, etc.) and the dates you were immunized to prevent these diseases. The physician or physicians' assistant will then perform a physical examination and order tests.
During this visit, you will also meet with a transplant nurse coordinator, who will walk you through every step of the process and inquire about your insurance coverage. If you would like, we can arrange for you to speak with former transplant patients about their experiences. You will also meet with a social worker to discuss questions about housing, transportation and financial arrangements and to provide counseling.
Testing
Before a treatment decision can be made, the transplant physician will review existing medical records, such as pathology reports and scans done before your visit. In addition, your physician may order a series of tests to tell us the stage of your disease, whether your major organs are healthy and whether you are a good candidate for a blood and marrow transplant. Some of these tests may be done in Morgantown, although many can be done close to your home by your physician.
The tests may include:
- a bone marrow aspirate and biopsy (removal of some bone marrow and examination under a microscope)
- a chest X-ray
- CT scans
- pulmonary (breathing) function tests
- kidney function tests (24-hour collection of urine)
- complete blood tests, including infectious disease testing (for viral infections such as hepatitis, herpes, HIV, etc.)
- an EKG and an echocardiogram
- PET scan
- MRI scan
The period of testing and waiting for results can take several days or even weeks. Although it may seem to be taking too long, this time is necessary to provide the best treatment plan for you. During this time, we encourage you to ask questions. Talking about your feelings with your family and with our staff can be very helpful during this waiting period.
Second Consultation
During your second consultation, you will meet with one of the transplant physicians and a transplant nurse coordinator to discuss your test results, the specifics of your disease and the kind of treatment recommended for you. At this time, arrangements may be made for you to see other specialists, depending on your test results. At this meeting we will also go over the consent forms you will need to sign before treatment. Ideally, you should be prepared at this visit to set dates for your treatment.
If you have young children, it would be good for them to accompany you on this second visit. Your treatment will require you to spend a significant amount of time away from home, and the visit may help your children to visualize where you will be.
Dental Treatment
The mouth can be a major source of infection after a transplant, and it is important to make sure you have no existing diseases of the teeth and gums when you begin your treatment. Before treatment begins, you will receive an evaluation by a hospital dentist. Dental cleaning, X-rays and repairs of decayed or broken teeth should be done, and may be performed by your local dentist. In addition, braces should be removed and loose or poorly fitting dentures should be adjusted.
Working with Your Local Physician
The transplant team will maintain close contact with your local oncologist to make sure he or she is kept up-to-date on your treatment. We consider your doctor to be a partner in your treatment plan and will work with him or her to provide as much care as possible close to home.
Financial Issues
Everyone is concerned about the high cost of health care, and transplant patients are no exception. Although many insurance companies will pay for bone marrow transplants for some diseases, they may deny coverage for others. Our office of Patient Financial Services will work with you from the beginning to find the best way to pay for your bone marrow transplant. Its staff, available by calling (304)589-4032, will help you navigate the system and ease you through the process.
Fertility Issues
Patients undergoing high-dose chemotherapy and/or radiation have a high risk of becoming infertile. For some male patients, sperm banking may be possible. Women may want to consider storage of fertilized eggs. Check with your doctor or gynecologist if those are options that interest you. Because of the time and expertise involved, women interested in egg storage must have that done in a reproductive center before coming to Morgantown. Please note that many insurance companies do not cover the cost of sperm banking or in vitro fertilization and egg storage.
Smoking Policies
If you use tobacco, we strongly urge you to quit before you undergo your treatment. The Mary Babb Randolph Cancer Center, Ruby Memorial Hospital and Family House are all smoke-free buildings.
Sources for More Information
If you decide to proceed with transplant and/or treatment you will receive a comprehensive Patient and Caregiver's Guide with many details about blood and marrow transplantation. If you want more information, ask the transplant coordinator. There are a variety of books and other publications available, many free of charge. If you have access to the Internet, the West Virginia Health Page at www.wvhealth.wvu.edu is an excellent resource.
Treatment and Hospitalization
After your treatment plan has been developed and your caregiver has been chosen, treatment usually begins with admission to the hospital. For patients receiving a transplant, it is a six-step process: (1) insertion of a venous catheter, (2) stem cell collection, (3) therapy to eliminate diseased cells or tumors, (4) the transplant itself, (5) waiting for engraftment (blood count recovery) and (6) recovery and initial discharge. The process can take from four to six weeks, depending on your particular case.
Placement of the Central Venous Catheter
For many patients, the first step of treatment is insertion of a catheter into a large vein beneath your collarbone. It will provide a painless way to draw blood samples and give medications, nutrition and transfusions, as well as the stem cells to be transplanted. Catheters are usually inserted at the hospital's Day Surgery Center or at bedside. Local or general anesthesia can be used when the catheter is inserted. For patients with an implanted port, this will be removed and replaced by the central venous catheter.
The catheter will remain in place during your hospital stay and, in some cases, after discharge. Although it may be uncomfortable at first, it is a major aid during treatment and recovery.
Care must be taken to keep the catheter clean. While you are in the hospital, the nurse is usually responsible for catheter care. However, before discharge, nurses will train you and your caregiver to become partners in that care.
Stem Cell Collection
Collecting Stem Cells from Blood (Apheresis)
For most patients who donate their own stem cells, those cells will be collected from the bloodstream in a process called "apheresis." Prior to apheresis you will be given growth factors-medications that increase the number of stem cells in the bloodstream. Some patients may also be given chemotherapy. You will then be connected to an apheresis machine, which withdraws small amounts of blood through your central venous catheter and separates out the stem cells. The remaining blood cells will be returned to you through the catheter. Generally, at least three collections are necessary on three different days. Each takes three to four hours. If we are unable to collect enough stem cells this way, you will need to have a bone marrow harvest.
Collecting stem cells from the blood of a matching family member or unrelated donor is essentially the same process as that used when the patient is the donor, except that chemotherapy is not given.
Collecting Stem Cells from Bone Marrow
The procedure for removing bone marrow for transplantation is called bone marrow harvest. It is done under general or spinal anesthesia in the sterile conditions of an operating room. Just as the body replaces blood donated for transfusions, in a matter of days it will replace the bone marrow that was removed.
During the harvest a special needle is inserted into the hipbone and about a quart of fluid is removed. The needle puncture sites may be sore for up to a week and there may be some temporary stiffness and local bruising. Many patients and donors have compared the discomfort and stiffness that they felt after the harvest to "slipping on ice and landing on their bottom."
Once your own bone marrow has been harvested, it is filtered and may be treated to remove cancer cells. It is then mixed with a preservative, frozen and kept in a special storage area until you are ready to receive it.
If the marrow comes from a family member or a matched donor, the harvest may take place the same day you are ready for the transplant, although it may be done ahead of time and the marrow frozen and stored. The donor can be discharged from the hospital the same day or the day after the harvest.
Therapy
Chemotherapy/Total Body Irradiation
Once a donor has been identified or your own stem cells have been stored, you will begin to receive large doses of chemotherapy and/or radiation therapy. Before treatment begins, you will be given consent forms that describe risks and benefits of this treatment. The therapy you receive is unique to you and depends on the type of disease you have, how much disease is present and the previous therapy you received.
Side Effects
The side effects that patients experience with high-dose chemotherapy and/or radiation therapy vary-they can last for a few hours or continue throughout the therapy. The most common side effects are nausea, vomiting, diarrhea, fever, fatigue, mouth sores and temporary hair loss. One major side effect is the lowering of blood counts. Most patients will need several blood and platelet transfusions during this time period. The transplant staff will give you medications to minimize discomfort and provide treatments to promote healing and relieve symptoms.
Clinical Trials
Clinical trials are studies conducted to test new and promising treatments. At West Virginia University, we offer clinical trials developed by researchers here and other transplant groups our program is affiliated with, as well as trials sponsored by drug companies. Participation in clinical trials is always voluntary, and we only conduct trials if the treatment offered is at least equal to the current standard of care.
Transplant Day
On the day of the transplant, you will receive the stem cells that were harvested either from you or from your donor. The cells will be infused through your catheter just like any other blood product or medication.
During the transplant, you can rest in bed, read, watch television or visit with family or friends. Side effects are uncommon and, if they occur, generally mild. Some patients experience nausea, vomiting, shortness of breath, flushing, chills or mild fever. Most stem cell transplants occur without difficulty, and the wait then begins for the healthy cells to enter your marrow and grow.
Waiting for Transplanted Cells to Engraft
Approximately ten to 28 days after the transplant, signs that the transplanted stem cells are growing (engrafting) and beginning to produce blood cells are expected. Blood counts are usually followed on a daily basis--often the first sign of engraftment is a rising white blood cell count.
Emotional Well-being
While waiting for engraftment, you may sometimes wonder if things will ever be normal again. This is the time when you need the encouragement and support of your family, friends and the transplant team. The role of the nurse is very important. Because each nurse is caring for only a few patients, he or she has the time to listen to your concerns, hopes and fears. The transplant unit also receives support from a social worker and a chaplain who have years of experience working with transplant patients.
It is important to have reasonable expectations of what you will be able to accomplish. Give yourself time to recover. Balancing periods of rest with light exercise helps you recover and prevents the complications of bedrest. You may be frustrated because progress seems slow. Taking one day at a time is one of the best ways to cope. Work with members of the transplant team to set a manageable goal every day.
Discharge from the Transplant Unit
Patients generally start to feel better after their transplanted stem cells have engrafted. As the new cells begin making blood cells, the blood counts rise. You will start feeling stronger and more hopeful as you look forward to discharge.
For the autologous transplant patient who still requires intravenous fluids and/or transfusions, initial discharge may be to Family House or to other local lodging such as an apartment. During this period, a caregiver will need to stay with you.
Allogeneic transplant patients are required to stay within 30 minutes of the Transplant Unit for the first 100 days following the transplant and will need to have a caregiver stay with them throughout that recovery period.
Getting Ready to Leave Morgantown
A number of factors determine when you are ready to leave the hospital or outpatient clinic setting and return home. When you are producing adequate numbers of red cells, white cells and platelets and are medically stable, we can plan the end of your stay at our center. We will give you a complete medical evaluation and you will receive the results and recommendations in a conference with your health care team.
Continuing Care When You Return Home
Once you are ready to reestablish your life after the transplant, staff experienced in managing long-term recovery will be made available to you and your home physician. Throughout your recovery, we will send periodic requests to you and your physician to assess any problems that could be related to your transplant.
Even though you have been discharged, recovery is not yet complete. You are still vulnerable to infection. Blood counts will need to be checked and antibiotics and transfusions may be required on an outpatient basis.
It takes time to recover from the transplant procedure, and you may feel tired for weeks or months after returning home. It may take up to a year or even longer for your immune system to become normal. For this reason, you will need to continue measures that help prevent infection.
The decision to return to school or to full-time work will depend upon your immune system, medical status and the nature of your work.
Unfortunately, even with a blood and marrow transplant, some patients may experience a recurrence of disease. Yet, despite the risk of serious complications and relapse, blood and marrow transplantation does offer the hope of a cure.
Quality of Life
The vast majority of transplant survivors say they are cured and leading full and meaningful lives. What did reestablishing their lives entail? For some, it included dealing with physical complications. For others, it required an adjustment in relationships with their spouses, families and friends. In spite of all the challenges, survivors report that the quality of their lives are now the same as or better than before the transplant. They report benefits such as becoming more flexible, learning how to overcome personal fears, gaining a greater appreciation of life and discovering a spiritual strength as a result of the transplant experience.
We hope this booklet has helped you to better understand blood and marrow transplantation and that you will strongly consider a visit to our facility when making your treatment decision. Although we know the value that transplant treatment can bring to patients' lives, ultimately, the choice is yours. Only you know what is best for you and your family, and your decision will receive our full respect and support.
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This is a publication of the Blood and Marrow Transplatation Program of the Mary Babb Randolph Cancer Center and Ruby Memorial Hospital at West Virginia University’s Robert C. Byrd Health Sciences Center.
Acknowledgment: Funding for this handbook was provided by Annette, Marc and Darren Tanner in memory of Douglas H. Tanner.
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