Welcome to the Caregivers for BMT, CAR-T and Hematology blog. Here you will find information relevant to you when caring for a loved one before and after cellular transplant or CAR-T therapy. It is intended to give you the education, resources and support to help you care for your patient and yourself during this time.

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A: Allogeneic stem cell transplant: Puts a supply of stem cells from a donor into the body. The donor cells must match the patient’s cells genetically. In many cases, the donor is a brother or sister. But it could be another family member or even a person who is not related to the patient.  

  • Specific kinds of allogeneic stem cell transplant include:
    • Syngeneic transplant: Stem cells are taken from an identical twin. Because identical twins have the same genes, they are always genetically matched. But they may not be the best stem cell donors in all cases. 
    • Half-match transplant: Also called haploidentical transplant, the genetic match with this kind of transplant is at least half identical to yours. The donor can be a parent, brother, sister or child.
    • Cord blood transplant: Stem cells for allogeneic transplants can come from a baby’s umbilical cord blood. The cells can be collected from the umbilical cord at birth and frozen for future use.

A: Autologous stem cell transplant: Puts a supply of your own stem cells back into your body. This supply replaces stem cells that are damaged or destroyed by treatment for a disease, usually cancer.

A: Apheresis: Stem cells are collected from blood through a process called apheresis. This process separates stem cells from the rest of the blood.

  • During an apheresis session, the patient lies on a bed or sit in a reclining chair. Blood is drawn from a vein, or it may be taken through a central line. 
  • The blood goes through a machine that removes the stem cells. The remaining blood is then returned to the body through a vein.  
  • One apheresis session takes about five hours. The sessions usually are done once a day for several days in a row. 
  • To collect enough stem cells for the transplant, the patient may need more than one session. Many people need three sessions of apheresis to gather enough stem cells for a transplant. But it may be more, depending on the situation.  
  • Most people do not need to stay in the hospital between stem cell collections.

C: CAR-T: T-cells are a type of white blood cell that flow around in the blood throughout the body. Their normal job is to notice changes, such as infection and cancer, then prevent or correct them. However, many cancers have found ways to prevent the T-cells from doing their job. 

  • Chimeric antigen receptor T-cell therapy, also known as CAR-T therapy, is one way to overcome this problem.  
  • CAR-T therapy involves:
    1. Removing some T-cells from your own body.
    2. Genetically changing them to CAR T-cells.
    3. Putting the T-cells back into your body so they can identify and destroy certain cancers. 
  • To make the cells, T-cells are genetically treated in a laboratory to produce special receptors called chimeric antigen receptors, or CARs. These CARs allow the T-cells to recognize an antigen on the surface of cancer cells and activate the T-cells’ ability to kill these cancer cells. Antigens are sometimes called markers. 
  • CAR-T therapy is not the same as a stem cell transplant or chemotherapy, although chemotherapy is part of the process. CAR-T is also called cellular therapy.

C: Caregiver Burden: As a caregiver, you may be so focused on your loved one that you don't realize that your own health and well-being are suffering. Watch for these signs of caregiver stress: 

  • Feeling overwhelmed or constantly worried 
  • Feeling tired often 
  • Getting too much sleep or not enough sleep
  • Gaining or losing weight 
  • Becoming easily irritated or angry 
  • Losing interest in activities you used to enjoy 
  • Feeling sad 
  • Having frequent headaches, bodily pain or other physical problems
  • Abusing alcohol or drugs, including prescription medications

C: Cellular Therapy: Cellular therapy is the transplantation of human cells. Transplanted cells also are called infused cells. The goal is to replace or repair tissue or cells that are damaged. The infused cells also may directly kill cancer cells. Infused cells may have come from the patient or from another individual. For people who have cancer, cellular therapies include stem cell transplantation, also known as a blood and marrow transplant (BMT), and chimeric antigen receptor (CAR)-T cell therapy. 

C: Collecting Stem cells from blood: Blood that circulates through a person’s body is called peripheral blood.  

  • This is the most common source of stem cells for a transplant.  
  • The first step in collecting stem cells from a donor’s blood is to get the bone marrow to release stem cells into the peripheral blood. To do this, the donor receives daily injections of proteins called growth factors. Growth factors raise the number of stem cells in the blood, so they can be collected. Usually, it takes about four days of growth factor injections before stem cells can be collected, but it may take longer.  
  • Stem cells are collected from blood through a process called apheresis or leukapheresis. This process separates stem cells from the rest of the blood. Blood is drawn from a vein. It goes through a machine that removes the stem cells. The remaining blood is then returned to the body through another vein.  
  • A donor may need to go through the procedure more than once to collect enough stem cells for the transplant.  
  • Stem cells collected from either blood or bone marrow can be used within 48 hours. Or they may be frozen until they are needed. Frozen stem cells can last for years. 

C: Collecting Stem cells from bone marrow: Collecting stem cells from bone marrow involves surgery to take bone marrow from the donor. The procedure uses general anesthesia. It often requires the donor to stay in the hospital overnight.  

  • For the surgery, the surgeon makes two to four small incisions just above the buttocks. Then the surgeon places hollow needles through the incisions and into the pelvic bones. The needles are used to draw bone marrow out of the pelvic bones. Only a small amount of marrow can be removed at a time, so the needles must be inserted into the bones many times.  
  • Bone marrow collection usually takes one to two hours. After surgery, the bone marrow is filtered and processed to make it ready for the stem cell transplant.  
  • Stem cells collected from either blood or bone marrow can be used within 48 hours. Or they may be frozen until they are needed. Frozen stem cells can last for years. 

C: Conditioning: To get the body ready for a transplant, the patient goes through a process called conditioning. It usually includes chemotherapy, radiation therapy or both. The patient is likely to have side effects from conditioning. 

  • Conditioning with chemotherapy: Chemotherapy attacks cancer cells. While there is no guarantee that chemotherapy will destroy all the cancer cells in the body, it may be able to slow or stop the spread of the cancer. Conditioning chemotherapy usually is given through a central line. The transplant physician decides how long the chemotherapy lasts and whether the patient needs to stay in the hospital while being treated.
  • Conditioning with radiation therapy: Radiation therapy may be part of the transplant conditioning. How much radiation to get and how often to have radiation therapy depends on the needs. The transplant physician decides whether the patient has to stay in the hospital while they have radiation treatment. 

 C: Cytokine Release Syndrome (CRS): With a CAR-T, Cytokines are substances made by the immune system that act as chemical messengers to other cells. The cell performs activities based on the specific chemical message it receives. There are different types of cytokines that can act alone, work together, or work against each other. Cytokines help regulate the immune response and cause many of the symptoms you feel when fighting an infection, such as fever, nausea, and pain. High levels of cytokines can be released when receiving certain immune based therapies like CAR-T cell therapy. This may result in cytokine release syndrome, also called CRS. CRS can make you feel like you have the flu. Symptoms can include the following:  

  • Fever
  • Upset stomach
  • Chills
  • Headache
  • Rash
  • Scratchy throat
  • Difficulty breathing
  • Low blood pressure
  • Racing heart rate

E: Engraftment: When they enter the body, the new stem cells begin to travel into the bone marrow. In time, they multiply and begin to make new, healthy blood cells. This is called engraftment.  

  • It usually takes several weeks before the number of blood cells in the body starts to return to normal.  In some people, it can take longer.
  • In the weeks after the transplant, the health care team checks the blood often to see how many new blood cells are being made. Until the donated stem cells start making new blood cells, the patient may need blood transfusions. This is done to ensure that the body has the blood cells it needs. 

G: Graft-versus-host disease (GVHD): This happens when the donor stem cells that make up the new immune system see the patient's body’s tissues and organs as something foreign and attack them.  

  • GVHD may happen any time after the transplant. But it is more common after the marrow has started to make healthy cells. Many people who have an allogeneic stem cell transplant get GVHD at some point.  
  • The risk of GVHD is a bit greater with unrelated donors. But it can happen to anyone who gets a stem cell transplant from a donor. 
  • There are two kinds of GVHD, acute and chronic.
    • Acute GVHD usually happens earlier, during the first months after transplant. It typically affects the skin, gut or liver.
    • Chronic GVHD typically develops later and can affect many organs. 

L: Leukapheresis: White blood cells used for CAR-T are collected from blood through a process called leukapheresis. This process separates white blood cells from the rest of the blood. 

  • During leukapheresis, you lie on a bed or sit in a reclining chair. Blood is drawn from a vein in your arm or through a central line, if you have one.  
  • The blood goes through a machine that removes the white blood cells. The remaining blood is then returned to your body through a vein. The collection process takes about five hours.
  • Most people are able to have enough white blood cells collected during one session. 

N: Neurotoxicity: When CAR-T cells activate the immune system, they can cause neurotoxicity. This means that they can change normal brain and nerve activity. Usually, these changes are temporary and occur within days to weeks after CAR-T cell infusion. Symptoms of neurotoxicity can include the following:  

  • Poor memory  
  • Slow reaction time
  • Confusion
  • Personality changes
  • Feeling tired
  • Loss of consciousness
  • Numbness in your hands and feet
  • Having a hard time concentrating, talking or breathing
  • Seizures

S: Stem Cells: The spongy tissue inside your bones, called bone marrow, contains stem cells. Those stem cells make your body’s blood cells. These cells include red blood cells, platelets and white blood cells. Without healthy bone marrow and healthy stem cells, your body cannot make the blood cells it needs. Stem cell transplant may also be called:

  • Bone marrow transplant 
  • Blood and marrow transplant 
  • Peripheral blood stem cell transplant 
  • Hematopoietic stem cell transplant 

S: Stem Cell Infusion: After conditioning, the stem cell transplant can take place.  

  • The patient may need to stay in the hospital for the conditioning treatment, for the stem cell transplant or for both. Or they may be outpatient procedures, where one does not have to stay overnight at the hospital. The health care team will talk with you about this before the transplant. If you do not need to stay at the hospital, the caregiver should plan to take the patient to where you are staying after the transplant is finished. 
  • On the day of the transplant, called day zero, the stem cells are given through the patient’s central line using a process known as infusion.  
  • The transplant infusion is painless. 
  • The patient is awake during the procedure.  
  • The infusion of stem cells typically takes 30 to 90 minutes.
  • Stem cells that have been frozen and thawed contain a preservative that protects the cells.
  • Just before the transplant, medications may be given to lessen the side effects the preservative can cause.
  • The patient is also given IV fluids — a process called hydration — before and after the transplant to help the body get rid of the preservative. 

 T: Transplant Team: 

  • Advanced Practice Provider: Nurse Practitioners and Physicians Assistants assist transplant doctors with inpatient and outpatient care, including evaluation, testing, post-transplant care, providing education, health promotion, disease management and care coordination. 
  • Dietician: Helps with the nutrition-related aspects of preparing for and recovering from transplant. The dietitian may discuss the following items: 
    • Questions about diet
    • Previous and current medical history including weight, exercise/activity habits, cooking tendencies and more
    • How proper nutrition can help prepare the body for transplant and recovery
    • Food/drug interaction and safety after transplant 
  • Doctor: The Primary Transplant Doctor oversees the patient’s complete care along with all members of the care team. Reviews all consultations and specialty visits and consults on the patient’s candidacy for transplant. 
  • Financial Coordinator: Helps with financial and insurance questions. The financial coordinator meets with each patient to help them understand their insurance coverage and answer questions related to the coverage for transplant appointments and care. 
  • Hematologist: A doctor who has special training in diagnosing and treating blood disorders. 
  • Palliative Care: Palliative care is specialized medical care for people living with a serious illness. This type of care is focused on providing relief from the symptoms and stress of the illness. The goal is to improve the quality of life for both the patient and the family.
  • Nurse Coordinator: Responsible for all of the communication that goes on among patients, doctors, clinics and hospitals before and after transplant. 
    • Assess patient for health status changes
    • Provide education on recovery, including medications, when to return to the clinic, post-transplant labs, etc.
    • Emphasize the importance of having a local provider to provide continuous care once you return home
  • Pharmacist: Available for patients throughout all phases of transplantation. They work with the multidisciplinary team to provide various levels of assessments/interventions to patients based on the patient’s needs and status.
  • Psychiatry: Meet with patients who may need further assessment and intervention related to mental health and substance use pre- and post-transplant.  
  • Social Worker: Provides psychosocial support pre- and post-transplant by discussing:
    • Caregiver and support network
    • Mental health history including alcohol and drug use
    • Ability to be compliant with medications and recommendations
    • Financial concerns
    • Transportation and housing issues
    • Home life and living situation 
  • Social Support: A combination of family, friends, neighbors, and community members who help you emotionally, physically, spiritually, and financially when needed.