This information describes what to expect before, during, and after your child’s total body irradiation (TBI) therapy. In this resource, the words “you” and “your” refer to you or your child.
TBI is radiation therapy that is given to the entire body. Many patients have TBI before their stem cell or bone marrow transplant for any or all of the following reasons:
- To decrease the response of your immune system to the transplant. If you are getting bone marrow or stem cells from a donor, your body may see these as foreign. The immune system may try to destroy these cells. TBI is done so that your immune system won’t destroy these cells.
- To destroy cancer cells in areas not easily reached by chemotherapy. These are the nervous system, bones, skin, and testes in men.
- To create space for the new marrow to grow (engraft).
You will meet with your radiation oncologist and radiation nurse for a consultation to discuss your treatment. Your doctor will talk with you about how the radiation will be given and some of the side effects that you may have.
Very young children will need to have anesthesia for their planning session and treatments. Some older children may need the assistance of a child specialist. He or she will come to the planning session and the treatments, if needed. Your doctor will discuss this with you during the consult.
The next step is the treatment planning session, also called a simulation. Sometimes, it can be done on the same day as the consult. It usually takes 2 to 4 hours and you do not need to do anything to prepare for it.
Before the simulation, your radiation therapist will take a photograph of your face. This is placed in your folder and will be used to identify you during your treatments.
Next, your therapists will help you lie on a table. They will do a computed tomography (CT) scan, which will be used to plan your treatment. No needles or contrast (dye) will be used during the CT scan. It is very important for you to stay still during this time. However, if you are uncomfortable or need assistance, tell your therapists. To help pass the time, your therapists can play a CD for you. You may bring one of your own from home, if you wish.
Some very young patients may not need a CT scan. Your radiation oncologist will discuss this with you.
Your therapists will take x-ray images of your chest. They are taken on the same machine on which you will be treated. For young children getting anesthesia, the x-rays will be done during the simulation while they are asleep.
Skin markings (tattoos)
Your therapists will draw on your skin with a felt marker that can be washed off after your simulation. They will use these marks to make permanent skin markings called “tattoos” with a sterile needle and a drop of ink. The tattoos will be used as markers to position special blocks that will protect your lungs during treatment (see “Treatment planning” below). The tattoo marks are no bigger than the head of a pin. The sensation of getting one feels like a pinprick. You will receive two tattoos, one on your upper back and one on your upper chest. The tattoos are permanent and will not wash off. If you are fearful of getting the tattoo, your therapists can apply a special cream or spray that will numb the skin. Some photographs will be taken of you after you get the tattoos. If you’re concerned about receiving tattoos as part of your radiation treatment, talk with your doctor.
After your simulation, a team will plan your treatment using your x-rays and CT scan.
There are several things your team must consider. One is that the lungs are very sensitive to radiation. They cannot get the same dose that the rest of your body will receive. To protect them, lung blocks will be made. The blocks will decrease the dose of radiation to your lungs. Your therapists will use the chest x-ray and tattoos that you had during your simulation to make the blocks. The blocks will be placed on a screen in front of your body during each treatment.
The bones in the area of your chest wall that is located behind these blocks contain a lot of bone marrow. These areas must receive a full dose of radiation. As a result, once a day for 2 days, you will receive radiation to the front and back of your chest wall without the blocks. The images taken of your chest will be used to plan the treatment to your chest wall.
The details from your simulation will be planned and checked. This takes between 5 days and 2 weeks.
You will be admitted to the hospital. Your TBI will be given in multiple treatments. Your treatment schedule will depend on the type of TBI you will have.
For younger children who receive anesthesia:
- TBI treatments will be given twice a day.
- He or she cannot eat or drink for several hours before each treatment. Your doctor will discuss this with you.
For older children:
- TBI treatments will be given 3 times a day.
- During treatment, you will be alone in the room, but your parents may stand outside the room with your therapists.
- Your therapists and parents can see and hear you through an intercom and video screen. They may also use the intercom to talk to you while you are getting your treatment.
An escort will bring you to your treatments. Wear lightweight, loose-fitting clothes when you go to treatment. Your clothes should not have any metal. You can keep your socks on, but you must take off your shoes or slippers. Do not wear any jewelry or metal objects (rings, necklaces, hairpins, etc.). These may increase the radiation dose to that area.
There will be a CD player in the room. If you would like, you may bring a CD from home to play during your treatment. A DVD player is also available. If you prefer to watch a DVD, you may bring one from home. You can also chose from the ones we have in our department.
You must be in the correct position during treatment. Infants and very small children will be wrapped in a papoose board on a table. Older children will be positioned standing on a platform. You will stand over a bicycle-like seat with your hands placed on bars on either side of your hips. A harness will be placed around your body and attached to the frame. This will prevent you from falling. Your radiation therapists will help you get into this position.
You will face the machine for the first half of your treatment and will be turned away from it for the second half. Your therapists will use the tattoos that you got during your simulation to place the lung blocks on a board that will hang in front of your chest. The blocks will not touch your body. A large Plexiglass® screen will be placed in the front of your body before your treatment begins to make sure that the radiation is evenly distributed.
During Your Treatment
Your therapists will leave the room when you are in position. Breathe normally, but do not move during the treatment. If you move, the treatment will not be evenly distributed. However, if you’re uncomfortable or need assistance, tell your therapists.
You may hear the machine click as it turns on and off, but you will not feel anything. Having a radiation treatment feels like having an x-ray; it does not hurt. The treatments will take about 15 to 20 minutes.
Although you are alone during your treatment, your therapists will be watching you on a TV screen. They can talk to you over an intercom system. They can hear you if you have any questions or problems during your treatment. If at any point you are not feeling well, tell them. The treatment can be stopped to allow you to rest. The therapists will come into the room to help you. Your treatment will be restarted once you are feeling better.
Neither you, nor your clothes become radioactive during or after treatment. It is safe for you to be around other people.
Extra doses of radiation may be given to specific areas of your body. This is called a “boost.”
Some boosts may be given before you are admitted to the hospital for your TBI and transplant. Boosts may be given to the:
- Spleen in patients with chronic leukemia who have an enlarged sple
- Fluids that bathe the brain and spinal cord, if your doctor thinks cancer cells may be in these areas
Some boosts are given while you are getting TBI. These can be to the:
- Front and back of your chest wall, without the blocks, once a day for 2 days of your treatment
- Testes in male patients who have acute leukemia or myelodysplastic syndrome. These are often done on the last day of treatment. You will be lying down for the treatment with your penis and scrotum exposed. You will not feel any pain or discomfort
Side Effects of Treatment
You will not feel any pain during your treatment, but you may experience side effects. Some occur right away or during the 4 days of treatment. Others may occur days, weeks, or months after your treatments are completed.
During treatment, the most common side effects include:
- Nausea and vomiting
- Skin reactions
A less common side effect is swelling of the salivary glands (glands that make your saliva). This causes temporary pain in front of the ear and in the jaw.
These side effects are most severe during the first day of radiation. They usually begin 1 to 2 hours after the first treatment. If you are experiencing nausea and vomiting, this usually stops by the third day. Your doctor can give you medication to decrease nausea and vomiting. You may also have diarrhea during the first few days of your treatment. Tell your nurse if you have any symptoms.
Some patients may develop a mild reddening of the skin during the first few days of treatment. Before you come to the hospital, please buy Aquaphor® or Eucerin® cream. Do not apply any lotions, creams, ointments, powder or deodorants before your treatments. You may moisturize your entire body each evening after the last treatment of each day.
After radiation therapy is completed, your skin may feel dry and itchy. If you received a boost to the testes, the reaction may be more severe in the scrotum. Continue to moisturize after the treatments are completed until your skin returns to normal.
You may experience other side effects during the days and weeks after your treatment ends. These also may be from the chemotherapy you have received. They include:
- Hair loss
- Discomfort in your throat and mouth
- Taste changes
- Mouth sores
- Nausea and vomiting
- Bone marrow suppression (low blood counts)
These will go away over time.
TBI can cause long-term side effects. They can occur months or years after your transplant.
- Sterility (not being able to have children) is an expected side effect. Please talk to your doctor or nurse about any concerns you have.
- Your thyroid may not work properly. Some patients may need to take thyroid medication.
Other long-term side effects are rare, but can occur. They include:
- Inflammation of the sac that surrounds the heart
- Inflammation of the lungs
- New cancers
Your doctor will discuss these with you in detail during your consult.
The diagnosis and treatment of cancer can be a very stressful and overwhelming event. You may feel depressed, anxious, confused, afraid, or angry. You may have strong feelings about any permanent changes. These changes can have an impact on your emotional and mental well-being. Help is available for you at any time. If you would like counseling, your nurse can give you a referral to see a social worker, psychiatrist, or counselor.
Also, you may find it comforting to speak with a cancer survivor or caregiver who has been through a similar treatment. Through our Patient-to-Patient Support Program, you have the chance to speak with former patients and caregivers. To learn more about this service, please call (212) 639-5007.
After You Complete Your Treatment
When you leave the hospital, your team will follow your progress closely. You will have regular appointments with your doctors. These visits let us see how you responded to your treatment. Your doctors may also order blood tests, x-rays, and scans during these visits.
Bring a list of any questions and concerns you have. Also, bring a list of all your medications. If you are running low on any medication, let your doctor know before you run out.
If you have any questions or concerns, please speak with your radiation oncologist or radiation nurse.