The Transplant Process
Inpatient vs. Outpatient Transplant
The Rocky Mountain Blood and Marrow Transplant Program performs inpatient and outpatient autologous and allogeneic transplants. Factors that determine whether your transplant is performed inpatient or outpatient include:
- the language in your insurance policy
- your diagnosis
- your performance status, and
- whether you have a caregiver. You should discuss with your coordinator your preference to be inpatient or outpatient for transplant.
If you receive your conditioning regimen as an inpatient, you will be on one of the Blood and Marrow Transplant units at P/SL Medical Center. While on the transplant unit, you will have a private room. Transplant trained nurses will monitor you closely during your hospital stay.
A transplant physician, Mid-level Practitioner and members of the transplant team will evaluate you each day to monitor your progress. This evaluation consists of a physical assessment, review of medications, side effects you are experiencing, and addressing any new problems. Please use this time to communicate any questions or concerns you may have. If you would like a family member or friend to be present during the physician visit, please invite them. The transplant units have a liberal policy regarding visitation. If you find you need to limit your visitors, your nurse can assist in setting those limits.
If you receive your conditioning regimen as an outpatient, you will be in the Colorado Blood Cancer Institute Transplant Clinic. While in the transplant clinic, you will have a private room. Transplant trained nurses will monitor you closely during your clinic stay.
Your clinic visits will range from 2 to 8 hours depending on the treatment you are receiving that day. A transplant physician, Mid-level Practitioner and members of the transplant team will evaluate you each day you are in the clinic to monitor your progress. This evaluation consists of a physical assessment, review of medications, side effects you are experiencing, and addressing any new problems.
Please use this time to communicate any questions or concerns you may have. Your caregiver does not need to stay with you during your clinic visit. In fact, we encourage them to utilize this time to run errands or take a needed break. Your caregiver will need to meet with your nurse daily to provide information and receive instructions regarding your care before you leave the clinic. You are not to drive during the acute transplant period. Your physician will inform you when you are medically cleared to drive.
Conditioning regimens are high dose or reduced intensity and consist of a combination of chemotherapy, radiation and/or immunosuppressive agents.
The purpose of high-dose regimens is to destroy a greater number of cancer cells than with standard doses of chemo/radiotherapy.
- High-Dose Chemotherapy
There are several chemotherapy drugs that can be utilized. Chemotherapy regimens vary depending on the type of cancer, the stage of the cancer, and the available chemotherapy protocols. Your physician will discuss the best drugs and doses for your disease.
- Total Body Irradiation
In addition to chemotherapy, some patients also receive Total Body Irradiation (TBI) as part of their preparation for transplant. TBI is given in divided doses, called fractions, at the Radiation Oncology Department. The number of fractions you receive will depend on your treatment guideline or protocol. Each visit takes 1-1.5 hours. You will meet with the Radiation Oncologist and the Radiation Physicist prior to being admitted for your transplant.
- Non-Myeloablative Regimens/Reduced Intensity
The purpose of non-myeloablative or reduced intensity regimens is to create space in the patient’s marrow for donor cells. These regimens can accomplish this goal by giving lower doses of chemotherapy and/or radiation in conjunction with immunosuppressive agents.
Standard doses of chemotherapy with or without 1 –2 fractions of TBI are administered. These regimens vary depending on the type of cancer, the stage of the cancer, and the available protocols. Your physician will discuss the best drugs and doses for your disease.
STEM CELL TRANSPLANT
When you have completed your conditioning regimen, your own or donated stem cells will be given to you. A transplant physician, mid-level practitioner, or nurse will perform the transplant. The timing for re-infusion of stem cells varies from 0-3 days following the completion of your conditioning regimen. A stem cell or bone marrow transplant may sound dramatic, however the actual procedure is quite simple. The cells are infused through your central venous catheter similar to a blood transfusion.
If the stem cells you are to receive were frozen, they will be thawed in a water bath prior to re- infusion. Frozen cells are preserved in a substance called DMSO (Dimethyl sulfoxide), which is used during the freezing process to prevent ice crystals from damaging the stem cells. While these cells are infusing, you may notice a garlic-like odor and taste. Sucking on hard candy may decrease this taste if you find it unpleasant.
A slight odor, which may be detected in your breath, urine, stool, saliva, and perspiration, will be noticeable to those around you for one to two days after the infusion. Other side effects of DMSO preserved stem cells may include chills, nausea, fever, cough, flushing, headache, abdominal cramps, fullness, or diarrhea. Your nurse will give you medications and will slow the rate of re-infusion to minimize these effects.
If you are receiving cells from a donor who had their cells collected on the day of your transplant, the cells will be fresh, not frozen. Therefore, the symptoms related to the DMSO are not experienced with the re-infusion of fresh stem cells.
Regardless of whether you received fresh or frozen stem cells you may notice that your urine turns a reddish-burgundy color following the infusion. This is due to the painless passing of red blood cells that may have been contained in the stem cell product. Your urine will return to its normal color in one to two days.
High-dose therapy can cause a variety of side effects as a result of destroying normal cells in addition to cancer cells. Some of these side effects may be apparent during the chemotherapy or immediately afterward, for example, hair loss, nausea, diarrhea, loss of appetite, and fatigue. Other side effects may not occur until days, weeks, or even months later.
Patients receiving reduced intensity regimens often feel well early in the post transplant process. Side effects are minimal as the doses of chemo/radio therapy are significantly lower than high dose regimens.
Graft versus host disease (GVHD) is a process that occurs in both high dose and reduced intensity allogeneic transplants. GVHD is a process where the donor cells recognize the host cells (the patient) as foreign. GVHD presents post-transplant when the new immune system is gaining strength. The sites most likely to be affected by GVHD prior to D +100 are the gut, skin, and liver. You will receive immunosuppressive medicines to help prevent GVHD. It is very important that you take these as instructed.
Your stem cells are expected to grow (engraft) and begin to produce blood cells two to three weeks following your transplant. During engraftment, you may notice aching in your bones, especially in your pelvis, lower back, and thighs.
Your white blood cells are the first to engraft followed by platelets, and then red blood cells. Autologous patients usually engraft all three blood cell lines within 6 weeks post-transplant. Allogeneic transplant patients may have delayed engraftment of platelets and red blood cells for several months. This means you may continue to receive platelet and blood transfusions even when you are discharged from the hospital.
There are many aspects about the transplant process that you may find stressful. The treatment and side effects are physically and emotionally draining for patients. Fatigue, nausea, pain and other unpleasant physical symptoms may worsen emotional symptoms and vise versa. Be assured, the transplant doctors, nurses and psychologists will closely monitor your physical and emotional symptoms and will intervene with medication or behavioral tools as needed to control your discomfort.
Many emotional reactions are common during the transplant process, such as depression, anxiety, fear, anger, guilt, relief and hope. Below are a list of common symptoms of depression and anxiety. It is normal to have a wide range of feelings during transplant that may vary from day to day.
Occasionally having some of these symptoms does not mean that you have depression or anxiety. However, if several of these symptoms are present for more than a few days, you should mention this to the transplant staff so you can receive help. Having someone to talk to about feelings that come up during the transplant process is important so you are not alone in dealing with these feelings.
A transplant psychologist is available to provide support in coping with feelings and issues that arise during the transplant process. We all have ways of coping with stresses in our life; some are more effective than others. The psychologist can help to identify and enhance coping resources that may be useful during the transplant process. For example, relaxation and imagery techniques, taught by the psychologist, can help in managing difficulties with sleep, anxiety, or discomfort.
The psychologist is also available for family meetings or to meet individually with family members or children. Family meetings can be helpful to facilitate discussions about issues that arise during the transplant process.
A common feeling for patients going through transplant is a loss of control. Giving up your own routine and independence can be frustrating, and relying on others to care for you can be difficult. We encourage you to retain as much control as possible, including making decisions for yourself, being informed, and getting your questions answered. You should continue to be independent with aspects of your daily care that are important to you.
Realistic expectations are important through the transplant process. When we set expectations we cannot meet or have inaccurate perceptions of what to expect from transplant and recovery, it adds to the stress of the process.
Symptoms of anxiety and depression are more common when expectations are not met. So, for example, if you tell yourself you will be back to work in one month even though the doctor is telling you three months, and at one month you are unable to return to work because you are too tired, you are more likely to be disappointed and frustrated. Thus, it is important to set realistic goals and discuss questions, concerns and uncertainties with your transplant physician or team so you can obtain accurate information and clarify misconceptions.
Symptoms of Depression
- low mood, sad mood
- feelings of worthlessness, hopelessness, guilt
- poor sleep (sleeping too much or too little, early morning wakening)
- loss or increase in appetite
- irritable or easily annoyed
- fatigue/loss of energy
- loss of pleasure in life
- withdrawal from others
- crying easily
- negative viewing of events
- self-blame or self-criticism
- thoughts of death
- decreased concentration
- loss of sexual drive
Symptoms of Anxiety
- nervousness, excessive worry, feelings of tension
- fearful anticipation
- poor concentration
- difficulty with memory
- restlessness, fidgeting, inability to relax
- sleep problems
- difficulty completing tasks
- changes in eating, drinking or smoking habits
- grinding teeth
- tension headaches, muscle tension
- choking feeling, difficulty swallowing
- queasy stomach, stomachache, nausea, vomiting, loosening of bowels, constipation, urinating frequently
- loss of interest in sex
- shakiness or tremors
- weight gain or loss
- awareness of heartbeat, rapid heartbeat
- dry mouth
The transplant process is difficult for caregivers as well as the patient. Caregivers or family members may experience many of the stresses and feelings that patients experience. In addition, the transplant process places stress on family and marital relationships.
Often, when patients are not feeling well, they are more irritable and they can direct that irritability at family members who are their supports. Being the “punching bag” can be difficult when you are already picking up extra duties due to the patient’s illness.
It is important for family members to seek support for themselves going through this process. There is a weekly support group for caregivers of transplant patients at Presbyterian/St. Luke’s Medical Center that provides an opportunity for caregivers and family members to meet each other, have a place to discuss their experiences, and obtain support. The transplant psychologist is also available to meet individually with family members and caregivers.
The patient and staff rely on caregivers to stay healthy. So it is important, if you are a caregiver, to take care of yourself through the transplant process. This may mean scheduling a break for yourself when the patient is in the inpatient unit or during outpatient appointments, even if it is just for an hour. If possible, it is helpful to have more than one caregiver so longer breaks can be arranged.
Even if it is not possible to have more than one caregiver, it can help to have friends or family assist with daily tasks such as meals, house cleaning, child care, laundry, transportation, or fielding phone calls. All of these duties take energy, and your energy will be limited, so take advantage of offers for help.
Children can have an especially hard time when a parent is ill. They are sensitive to changes in their routine and changes in who cares for them. It is important to try to maintain a regular schedule for them. Talk with them, in an age-appropriate way, about what to expect through the transplant process.
Children are much more able to handle what is going on if they have honest information. Be sure to tell them how their needs will be taken care of through the transplant process. Providing them with an outlet to talk about normal feelings and fears that come up as their parent goes through transplant is essential.
Sometimes a parent is unable to hear all of their fears without feeling they need to “fix it.” A referral to a child therapist, or group specializing in working with children whose parent is ill, may be helpful. Please ask the transplant psychologist for assistance if you need some direction or referrals.