Caregivers for BMT, CAR-T, and Hematology Transplant Journey

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.

Public blog

Autologous Blood/Marrow Transplant (BMT)
Allogeneic Stem Cell Transplant
Chimeric Antigen Receptor (CAR)-T Cell Therapy
Nutrition Guidelines
Infection Prevention
Packing List
Helpful Apps

*This is a general overview. Please follow your doctor’s recommendations for your specific plan.

Autologous Blood/Marrow Transplant (BMT)

1. Evaluation

What to Expect

About 5 days
Outpatient
Plan for several appointments each day like:
- Tests/procedures
- Consultations with BMT doctor, BMT Nurse Coordinator, and possibly other members of the BMT team (social work, psychiatry, etc.)

Caregiver Role

Very important to have a caregiver present if sedated for a test (example: bone marrow biopsy)
These visits have a lot of education and information. It is helpful to have a caregiver present to take notes and remember information.

2. Collection/Harvesting

What to Expect

About 5 to 10 days
Outpatient
First four days are growth factor injections only. These appointments are scheduled for 15 minutes.
The next one to five days after the injections are the stem cell collection procedure (also known as apheresis).
- Apheresis is typically 5 hours per session
- Some people can finish collecting all stem cells in one session. Some people may need 5+ sessions.

Caregiver Role

It is vital for a caregiver to be present during apheresis days in case patient struggles with side effects.

Video: An overview of the collection process, before, during and after the stem cell collection.

3. Conditioning Chemotherapy

What to Expect

About one to seven days, depending on your doctor’s instructions.
May be done inpatient or outpatient, depending on your doctor’s instructions.

Caregiver Role

If this is done outpatient, it is required to have caregiver present with patient 24/7 in case side effects occur.
If this is done while patient is hospitalized, it is helpful to have caregiver present for emotional support of patient and for caregiver to receive medical updates from hospital team.

Video: An overview of conditioning in preparation for an autologous stem cell transplant. Topics include why chemotherapy and/or radiation therapy is necessary, low blood counts and risk of infection as common side effects, and that conditioning regiments and experiences differ from person to person.

Video: How to safely handle at-home tasks after chemotherapy treatment and precautions.

Video: How traditional chemotherapy works and why it causes side effects. Describes methods of coping with side effects and minimizing problems that result from them, including fatigue, bleeding, increased risk of infections, mouth sores, nausea, vomiting, diarrhea, constipation, taste and appetite changes, hair loss, neuropathy and more.

4. Transplant Day

What to Expect

About 5-8 hours
Can be inpatient or outpatient, depending on your doctor’s instructions.

Caregiver Role

It is required for patient to have their caregiver stay with them 24/7 when patient leaves the Transplant Center.
If this is done while patient is hospitalized, it is helpful to have caregiver present for emotional support of patient and for caregiver to receive medical updates from hospital team.

Video: Overview of how stem cells are infused for transplant, possible side effects, and the use of medications to help prevent and treat side effects.

5. Recovery at Transplant Center

What to Expect

About 3-4 weeks
Outpatient or Inpatient
- Depending on your doctor’s recommendations
Patient MUST stay nearby the Transplant Center if they are not hospitalized.

Caregiver Role

If outpatient, Patients are REQUIRED to have a caregiver with them 24/7
- Caregivers are required to come with patients to their daily follow-up appointments at the Transplant Center.
- Patients usually need help with symptom monitoring, transportation (patients cannot drive at this time), medication management, meal preparation, emotional support, and chores during this time.

Video: Describes the weeks after a BMT, how to prepare for them, the role of the caregiver and what to expect during recovery. Describes appointments, tests and procedures that may occur. Describes signs of engrafting, how test results are used, common side effects of the transplant with coping tips and activity guidelines. Includes precautions for preventing infections.

Video: Describes the types of blood cells that make up your blood counts and their role in the body. Identifies signs of low RBC, WBC, platelets. Describes actions to take because of low blood counts.

6. Recovery at Home

What to Expect

If patients live outside the Transplant Center proximity guidelines, they typically are ready to return home about 3-4 weeks after their Transplant Day 0.
Patients must usually return to the Transplant Center about 100 days after transplant day 0 for follow-up appointments.

Caregiver Role

Patients are not required to have a caregiver present 24/7 when they return home, though it is important that patients have family/friends that can visit them, or call them for help with things like chores, groceries, getting to local medical appointments, etc.

Video: Identifies actions patients should take after an autologous stem cell transplant to continue their recovery while living in the community. Focus areas include following the medication plan; preventing infection; and knowing when and who to call with questions or concerns.

Allogenic Stem Cell Transplant

1. Evaluation

What to Expect

About 5 days
Outpatient
Plan for several appointments each day like:
- Tests/procedures
- Consultations with BMT doctor, BMT Nurse Coordinator, and possibly other members of the BMT team (social work, psychiatry, etc.)
There is generally about 1-4 weeks of a break until Step 2 (Conditioning)

Caregiver Role

Very important to have a caregiver present if sedated for a test (example: bone marrow biopsy)
These visits have a lot of education and information. It is helpful to have a caregiver present to take notes and remember information.

Video: Describes allogeneic transplant and how it differs from autologous transplant. Describes risks including rejection and graft versus host disease (GVHD), specific procedures, precautions and recovery process.

2. Conditioning

What to Expect

About 3 to 10 days, depending on your doctor’s instructions.
May be done inpatient or outpatient, depending on your doctor’s instructions.

Caregiver Role

If this is done outpatient, it is required to have caregiver present with patient 24/7 in case side effects occur.
If this is done while patient is hospitalized, it is helpful to have caregiver present for emotional support of patient and for caregiver to receive medical updates from hospital team.

Video: An overview of conditioning in preparation for an allogeneic stem cell transplant. Topics include why chemotherapy and/or radiation therapy is a necessary, low blood counts and risk of infection as common side effects, and that conditioning regiments and experiences differ from person to person.

Video: How to safely handle at-home tasks after chemotherapy treatment and precautions.

Video: Explains how traditional chemotherapy works and why it causes side effects. Describes methods of coping with side effects and minimizing problems that result from them, including fatigue, bleeding, increased risk of infections, mouth sores, nausea, vomiting, diarrhea, constipation, taste and appetite changes, hair loss, neuropathy and more.

3. Transplant Day

What to Expect

About 10 hours
Can be inpatient or outpatient, depending on your doctor’s instructions.
If it is a bone marrow (not stem cell) donation, plan to be inpatient overnight.

Caregiver Role

It is required for patient to have their caregiver stay with them 24/7 when patient leaves the Transplant Center.
If this is done while patient is hospitalized, it is helpful to have caregiver present for emotional support of patient and for caregiver to receive medical updates from hospital team.

Video: Overview of how stem cells are infused for transplant, possible side effects, and the use of medications to help prevent and treat side effects.

4. Recovery at Transplant Center

What to Expect

About 100 days
Outpatient or Inpatient
- Depending on your doctor’s recommendations
Patient MUST stay nearby the Transplant Center if they are not hospitalized.

Caregiver Role

If outpatient, Patients are REQUIRED to have a caregiver with them 24/7
- Caregivers are required to come with patients to their daily follow-up appointments at the Transplant Center.
- Patients usually need help with symptom monitoring, transportation (patients cannot drive at this time), medication management, meal preparation, emotional support, and chores during this time.

5. Recovery at Home

What to Expect

If patients live outside the Transplant Center proximity guidelines, they typically are ready to return home about 100 days after their Transplant Day 0.
- If there are complications, patients may need to stay near the Transplant Center much longer.
Patients will have routine follow up at the Transplant Center, depending on their doctor’s recommendations.

Caregiver Role

Patients are not required to have a caregiver present 24/7 when they return home, though it is important that patients have family/friends that can visit them, or call them for help with things like chores, groceries, getting to local medical appointments, etc.

Video: Identifies actions patients should take after an allogenic stem cell transplant to continue their recovery while living in the community. Focus areas include following the medication plan; preventing infection; and knowing when and who to call with questions or concerns.

Video: General screening and monitoring recommendations for problems that can impact quality of life and survival even years after a stem cell transplant.

Video: Provides information about continuing care after a stem cell transplant. Includes insight for caregivers on their role and caring for their own health.

Chimeric Antigen Receptor (CAR)-T Cell Therapy

1. Evaluation

What to Expect

About 5 days
Outpatient
Plan for several appointments each day like:
- Tests/procedures
- Consultations with CAR-T doctor, CAR-T Nurse Coordinator, and possibly other members of the CAR-T team (social work, psychiatry, etc.)

Caregiver Role

Very important to have a caregiver present if sedated for a test (example: bone marrow biopsy)
These visits have a lot of education and information. It is helpful to have a caregiver present to take notes and remember information.

2. Collection

What to Expect

Usually 1 day
Outpatient

Caregiver Role

It is recommended for patient to have their caregiver stay with them 24/7 when patient leaves the Transplant Center, though not required.

Video: An overview of the what to expect before, during, and after white blood cell collection.

3. Chemotherapy before Infusion

What to Expect

About 3 days; you may need to come to Mayo Clinic up to 4 days before the chemo begins for additional appointments.
May be done inpatient or outpatient, depending on your doctor’s instructions.

Caregiver Role

If this is done outpatient, it is required to have caregiver present with patient 24/7 in case side effects occur.
If this is done while patient is hospitalized, it is helpful to have caregiver present for emotional support of patient and for caregiver to receive medical updates from hospital team.

Video: How to safely handle at-home tasks after chemotherapy treatment and precautions.

4. CAR-T Infusion Day

What to Expect

About 6 hours
May be done inpatient or outpatient, depending on your doctor’s instructions.

Caregiver Role

It is required for patient to have their caregiver stay with them 24/7 when patient leaves the Clinic.

5. Recovery at Clinic

What to Expect

About 30 days
May be done inpatient or outpatient, depending on your doctor's instructions.
If outpatient, Patient MUST stay nearby the Transplant Center.

Caregiver Role

If outpatient, Patients are REQUIRED to have a caregiver with them 24/7
- Caregivers must come with patients to their daily follow up appointments
- Patients usually need help with symptom monitoring, transportation (patients cannot drive for at least 8 weeks post-infusion), medication management, meal prep, emotional support, and chores during this time.

6. Recovery at Home

What to Expect

If patients live outside the hospital proximity guidelines, they typically are ready to return home about 30 days after their CAR-T Day 0.
- If there are complications, patients may need to stay near the hospital must longer.
Patients will have routine follow up, depending on their doctor’s recommendations.

Caregiver Role

Patients are not required to have a caregiver present 24/7 when they return home, though it is important that patients have family/friends that can visit them or call them for help with things like chores, groceries, getting to local medical appointments (patients cannot drive up to at least 8 weeks post-infusion), etc.

Nutrition Guidelines

Conditioning treatment for your stem cell transplant can cause side effects that make it hard to eat. A dietitian works with you on a regular basis following your transplant to help you plan how to eat and drink to meet your needs.

Eating a well-balanced diet can help you recover and keep you healthy after a stem cell transplant. The following guidelines can be useful as you plan your diet. Before you try these suggestions, talk to your transplant dietitian. Discuss any diet limits you have and find out which choices are best for you.

Make healthy food choices

A healthy diet usually includes:

Plenty of fruits and vegetables.
Whole-grain foods.
Low-fat or fat-free dairy products
Lean meats, fish and poultry or protein that comes from plants.
Heart-healthy fats.

In general, your diet should be low in salt, cholesterol, fat and sugar.

Drink enough fluids

Getting enough fluids is important to help you feel better and to help your kidneys do their job. Most beverages and some foods can be good sources of fluids. If you are eating well, drinking water is best. If you are having a hard time eating solid foods, drinking beverages with extra calories and protein may be helpful.

Avoid alcohol

Do not drink alcohol while you are taking medications after your transplant. Alcohol may interfere with those medications. If you have questions, talk to your transplant physician before you drink any alcohol.

Understand food safety

A stem cell transplant raises your risk for infection. You need to be careful to avoid getting an infection from the food you eat. Be sure to cook and store food properly. Keep the area where you prepare food clean. If someone else makes your food for you, talk to that person about food safety. Use these tips:

Wash. Wash your hands or use hand sanitizer before you make or eat food. Wash all fruits and vegetables with running water. Use a brush on foods with rinds or thick skins.

Use caution when you handle raw foods. To help prevent bacteria from spreading from one food to another, keep raw meat, poultry, seafood and eggs separate. Keep these foods and their juices away from other foods. Use separate cutting boards for meats, fruits and vegetables.

Talk with your dietitian about whether you should eat sandwich meats. These include packaged meats and meats you buy from a deli or grocery store meat department. These products are usually high in sodium. If you do eat them, buy packaged sandwich meats. Use them within three to five days. If you eat meat from a deli, heat the meat until it steams — about 165 degrees Fahrenheit. This includes mixed meats, such as hot dogs and bologna.

Use pasteurized products. Drink and eat only milk and cheese that have been pasteurized to destroy bacteria, molds and yeasts. Do not drink unpasteurized juice or cider.

Eat leftovers within two or three days. Before you eat leftovers, reheat them until they steam. ,

Check expiration dates. Do not eat food that is past its expiration date. After you open condiments such as mayonnaise, ketchup or relish, label the jar with the date you opened it.

Choose restaurants carefully. When you eat out, pick clean restaurants that serve fresh foods prepared at the right temperatures. Foods cooked to order at the restaurant are best. Avoid salad bars and buffets because the food is less likely to be held at a safe temperature.

Do not eat…

Foods that include raw or undercooked eggs, such as unbaked cookie dough or runny egg yolks.
Raw or undercooked meat.
Raw fish or shellfish, including sushi and raw oysters.
Raw sprouts, such as alfalfa sprouts or bean sprouts. For more information about food safety, talk to your transplant dietitian.

(Resource: mc2121 http://mayoweb.mayo.edu/sp-forms/mc2100-mc2199/mc2121.pdf )

Infection Prevention

What you can do to prevent infection

A stem cell transplant and the medications you take after a transplant suppress your immune system. This

puts you at high risk for infection. Some infections are serious. Some can be life-threatening. Take these steps

to lower your risk for infection:

Take medications to prevent infection as you are told. To help prevent infections, your transplant physician may prescribe antiviral medications, antibiotics or antifungal medications before or after your stem cell transplant. Carefully follow both how and when you have been told to take these medications.

Wash your hands often. Your caregivers and other family members and friends who are around you often should wash their hands frequently, too.

Wear a face mask. Wear a high-filtration face mask when you are around other people, especially if you are out in public. Always wear a mask when you are in areas of dust, construction, digging or high wind. Continue to do this until your transplant physician says it is no longer necessary. Many people need to wear a face mask regularly for at least three months after a stem cell transplant.

Be careful with your central line. If you have a central line placed, your health care team gives you directions on how to care for it. Follow the directions closely to prevent infection of the central-line site. If you have any pain, drainage, redness, warmth, swelling or tenderness around your central line, tell your health care team right away.

Do not have contact with people who are not well. Stay away from people with colds, flu, cough, fever or other infections, such as measles, mumps or chickenpox. If someone you have been around has measles, mumps or chickenpox, contact your transplant physician or RN care coordinator.

Do not smoke. Stay out of confined spaces where others are smoking.

If a sore or wound does not heal, no matter how small, tell your transplant physician or RN care coordinator.

Be careful working with soil. For six months after your transplant, or for as long as you are taking

immunosuppressant medication, do not garden or work in soil. After that, wear gloves if you are handling soil.

If you are a farmer, it is best to have an air-conditioned tractor.

If you have pets:

Avoid scratches and bites.
Do not change litter boxes, if possible. Have someone else do that for you. If you must do this job, wear

gloves and a mask. Wash your hands thoroughly after you are done.

Wear gloves when you trim a pet’s nails, do other pet grooming or clean an aquarium.
Do not get birds, rodents, amphibians or reptiles as pets. If you currently own one of these pets, you do

not have to get rid of it. But keep it in a room separate from you. Do not handle it or change its litter.

Wash your hands

Hand washing is the best way to prevent infections. It is especially important to wash your hands: