Patient journey — A step-by step description of the stem cell transplant process

Your primary oncologist will refer you to the transplant team for consultation.

During the first visit you will meet with the transplant team consisting of the physician, nurse coordinator, nurse practitioner and social worker for evaluation of your medical condition and determination of eligibility for a stem cell transplant.

You will be asked about your medical history, social support, transportation or other challenges you may  face. You will have a physical examination and a variety of lab tests may be performed. The transplant team will explain the benefits and risks of a stem cell transplant and give you an overview of what to expect. The transplant physician will tell you if you have the option of participating in a clinical trial, which is a research study that evaluates promising new treatments.

You will also be evaluated for your access to a strong support network. Bring one or more individuals who can provide support to you at your first appointment. You will need to designate a caregiver such as a responsible family member and/or friend who can provide physical care, emotional support, and transportation during and after your transplant.

Our financial coordinator will obtain information about your insurance coverage. If you don’t have adequate insurance, you may be eligible for financial assistance. Even with insurance coverage, the costs associated with a transplant can be significant. Our social workers will provide you with information about resources that can help relieve the financial burden associated with a transplant.

If a transplant is considered a good option for you, you will undergo several medical tests to assure you are well enough for the procedure and that your disease is appropriately controlled. All patients have a chest X-ray, EKG, lung, liver, kidney and heart function tests, infectious disease screening and a dental evaluation.

After the pre-transplant evaluation you will visit the transplant physician to review test results and determine whether a transplant is appropriate. If so, your insurance company will be asked to authorize the stem cell donor search (if needed), collection and transplant process.

Your transplant physician will decide what type of a transplant should be done and determine the stem cell source.

• For an autologous transplant, you will donate your own peripheral blood stem cells.
• For an allogeneic transplant, the transplant physician and nurse coordinator will work with you and your family to identify a suitable stem cell donor, often a genetically matched brother or sister. If you don’t have a match in your family, a search for an unrelated matched adult donor or an umbilical cord stem-cell donor will be initiated through the National Marrow Donor Program.

You and your caregiver(s) will meet with the transplant nurse coordinator for a two-hour educational session to learn more about the transplant process:

• Self-care and precautions to protect your health after leaving the hospital to prevent infection and activities to support your recovery.
• Foods to avoid and adherence to a low microbial diet, which are foods less likely to contain harmful bacteria.
• Signs and symptoms to watch for after hospital discharge.

All patients will have a catheter (a long, flexible tube often called a central line), placed in the chest. The catheter is used to give chemotherapy, medications, intravenous fluids, blood products, collect blood for lab work and to infuse stem cells.  If you are donating stem cells for yourself, the catheter will allow stem cell collection without inserting needles into your arm.

For autologous patients the catheter is placed prior to stem cell mobilization and collection (see below). For allogeneic patients the catheter is placed prior to hospital admission.

In an autologous transplant you will donate your own stem cells present in the blood stream.

You or your caregiver will be trained to inject a medication called Neupogen (or GCS-F), and in some cases, an additional medication called Mozobil, daily for a few days before collection starts. These medications make your bone marrow produce and release a large number of stem cells into the bloodstream. The process is known as “mobilization.” You may also undergo chemotherapy. Your transplant physician will determine your specific treatment.

During the stem cell collection you will be connected to the apheresis machine via your catheter. Blood will circulate through the machine where the stem cells are collected while the rest of the blood will be returned back to you. Each collection session takes approximately six to eight hours. Typically it takes one to five days to collect enough stem cells for a transplant. The apheresis procedure is usually well tolerated and side effects are minimal.

You will be notified of your stem cell counts each evening to determine whether you need additional injections of Neupogen and/or Mozobil and an additional collection the following day. The stem-cell collection will continue until the targeted number of stem cells is reached.

After stem cell collection, you will have several weeks to rest and recover before being admitted to the hospital for treatment and transplant.

LEARN MORE: Collection of stem cells in allogeneic transplants

Collected cells will be processed, cryopreserved and stored in liquid nitrogen tanks, at a very low temperature of approximately –189°C (-308°F) at the Hematopoietic Progenitor Cell Laboratory at the Cancer Center.  On the day of the transplant the laboratory staff will transport the frozen cells to the Bone Marrow Transplant Unit.

You will be admitted to the Bone Marrow Transplant Unit (BMTU) on Davis Tower 8. You will stay in a private room with bathroom. Your room will have a special ventilation system to assure the air is clean.

You will remain in the room during most of your stay, only leaving for physician-approved studies. This policy is designed to protect you from infection. We provide some exercise equipment in your room and encourage you to be out of bed as much as possible.

You will have diet restrictions, and will be on a low microbial diet. Our dietician will educate you on what kind of food you or your family can bring from home.

Visitors are allowed but restricted to guests over age 16 years. People who are ill are requested not to visit. For your visitor's convenience, a shower, a bathroom and a waiting area are located on the Bone Marrow Transplant Unit.

Your daily routine as a stem cell transplant patient will consist of physician and/or nurse practitioner assessment, laboratory results analysis, shower, medication administration, frequent oral hygiene, vital signs and nursing assessments. If you are medically stable, we will minimize interruptions to your sleep after 10 p.m. (the usual blood draw time). You will be connected to a continuously infusing I.V. line for the majority of your stay, but we encourage you to be as active as possible while you are here and to stay out of bed most of the day. This schedule may vary depending on how you are progressing through your transplant. Please ask questions and let us know if you are having symptoms or concerns. The nurse, physicians, and other staff are here to help make your hospital stay as safe and comfortable as possible.

We encourage you to bring activities from home such as books, small electronics, and laptops. The unit has a refrigerator, freezer and microwave so that you may bring a small amount of food from home to store for your use while you are here. Some patients bring comfortable pajamas, familiar objects and pictures from home, electric razors, and other small items for their comfort. Please do not bring large electronics such as TV's, game consoles, large amounts of perishable foods, blenders, coffee makers, toothbrushes, floss, or disposable razors. We provide some alternatives and want to assure your safety. Fresh flowers and restaurant-prepared foods are restricted due to your weakened immune system.

You will receive "conditioning" treatment all in a single day or in divided doses over a several days. Autologous transplant patients or younger patients receive a very high dose of chemotherapy with or without radiation. This type of conditioning is called myeloablative treatment. In certain situations, particularly in patients over 50 or 60 having an allogeneic transplant, lower-dose, less toxic chemotherapy and radiation are used in what is called a reduced-intensity or a non-myeloablative treatment.

The conditioning treatment will destroy cancer cells in your body and suppress your immune system to lower the chance of stem-cell rejection.

Prior to the infusion you will be given medications to reduce side effects and intravenous fluids for hydration. You will be awake during the infusion, although you might be mildly sedated from the medications given to prevent an allergic reaction.

If you are receiving cells that were frozen following the collection, Progenitor Cell Laboratory staff will transport the bags with these cells in a dry shipper to the Bone Marrow Transplant Unit. The bags will be thawed one at a time in a warm water bath.

If you are receiving cells donated by an unrelated donor, the cells most likely will be infused “fresh” (without undergoing freezing after collection) within 48 hours after the collection. Cells donated by your matched sibling will be also infused “fresh.”

The infusion of stem cells lasts between 30 minutes and three hours depending on the volume of stem cells.

The cells will be infused through a catheter inserted into the large vein in your chest. The procedure is similar to receiving a blood transfusion. During the infusion of the new cells your nurse will monitor you very closely and respond to any reactions.

Side effects are usually mild and can be reduced with medication. During infusion of previously frozen stem cells, you may also notice a garlic-like smell and taste, the result of a chemical called DMSO added during freezing. If you find it unpleasant you will get a popsicle to decrease this taste.

Engraftment is the process in which stem cells begin to grow and produce new red blood cells, white blood cells and platelets. The days following the transplant and before engraftment are the most critical. The high doses of chemotherapy and radiation destroy the bone marrow, leaving you with no white blood cells, decreased red blood cells and very few platelets. During this time you are susceptible to potentially life-threatening infections, for which you will be given preventive antibiotics.

You will feel extremely tired, weak and sick. If the stem cells you received were from a sibling or unrelated donor, you may develop graft versus host disease (GVHD), in which transplanted cells (graft) recognize the patient’s body (host) as foreign and attack it.

This complication can develop within a few weeks of the transplant (acute GVHD) or much later (chronic GVHD). To prevent this complication you may receive medications to suppress your immune system.

Engraftment usually occurs within two to four weeks after the infusion. Even though the blood counts return to normal, it takes much longer for your immune system to completely recover – several months if you received your own cells, and one or two years if you received cells from a donor.

The team of doctors, nurse practitioners and nurses will closely monitor you for side effects and complications and give you medications to treat these symptoms. You will get blood transfusions of platelets to prevent bleeding and red blood cells to treat anemia, and possible growth factors to help your body make more white blood cells.

The length of hospitalization after a stem cell transplant varies, depending on the transplant type, your response and other factors. You will be discharged from the hospital based on your health status after your blood counts are stable and sufficient, and any side effects of the treatment are controlled with oral medications. Before you go home your nurse, physician, or nurse practitioner will review discharge instructions with you and your caregiver(s). Staff will also go over your discharge medications with you at this time. You will continue on a low microbial diet at home as instructed by our dietician.

After hospital discharge, you will continue your recovery at home or, if you live far away from the hospital, in lodging near the UC Davis Medical Center.

You will feel weak and tired, and your immune system will still not be able to fully protect you from infections. You will remain at risk for post-transplant complications and will have to watch for early signs and symptoms of infection and quickly report them to your transplant doctor. You may have to return to the hospital for treatment, if needed. It will be very important that you focus on recovery, regaining your strength and energy, eating well, avoiding infections, taking your medications regularly and coming to the appointments with your transplant team. It can take many months and sometimes years for your immune system to rebuild and fully protect you again.

You and your caregiver play an important role during the recovery period. You will have to follow guidelines and orders provided by the transplant team. For allogeneic transplant patients, in particular, you will take many medications and have frequent blood tests. It is important for a caregiver to be involved and help you “stay on track” with the complicated regimen.

If you have questions during your recovery process call your transplant nurse coordinator.

During the initial recovery period your transplant team will follow you closely. During each appointment you will be evaluated for any infections or other complications. You will be scheduled for blood draws, X-rays, possible bone marrow biopsies or other tests to monitor your recovery. You may also need blood transfusions or intravenous fluid replacement.

The follow-up care by your transplant team will continue until post-transplant complications are resolved. Alert your doctor and transplant nurse coordinator to any problems you are experiencing.

Your care will eventually be transferred to your referring oncologist. The transfer usually occurs about two months after an autologous transplant and six or more months after an allogeneic transplant.