Patient Guide to Pediatric Intrathecal Radioimmunotherapy (RIT)

This guide will help you prepare for your intrathecal radioimmunotherapy (RIT) at Memorial Sloan Kettering Cancer Center (MSK). For the rest of this resource, our use of the words “you” and “your” refers to you or your child. Bring this guide with you every time you come to MSK so that you and your healthcare team can refer to it throughout your care.

About Intrathecal RIT and Monoclonal Antibodies

MSK is participating in several clinical trials (research studies) using a treatment called intrathecal RIT. Intrathecal RIT uses antibodies to treat certain types of cancer in the brain, spine, and leptomeninges (membranes that surround the brain and the spinal cord). The antibody is delivered directly to the fluid surrounding your brain and spinal cord, called cerebrospinal fluid (CSF). The type of antibody used in this treatment is called a monoclonal antibody. Below are common questions about intrathecal RIT.

What is an antibody?

An antibody is a protein that is made by your body’s immune system when it detects harmful substances, such as bacteria, fungi, parasites, and viruses.

What is a monoclonal antibody?

A monoclonal antibody is an antibody that is made in a lab and is specially designed to attach to cancer cells. The antibody has liquid radiation attached to it. This radiation kills the cancer cells directly without damaging normal tissue in the brain or spine. This type of treatment is called RIT.

What happens during intrathecal RIT?

During intrathecal RIT, the monoclonal antibody is injected directly into your CSF through an Ommaya reservoir. This is a quarter-sized, soft, plastic, dome-shaped device that is placed under your scalp during a surgery. If you already have a programmable ventriculoperitoneal (VP) shunt, the antibody can be injected into the VP shunt reservoir.

Back to top

Before Your Treatment

The information in this section will help you prepare for your treatment. Read through this section when your treatment is scheduled and refer to it as the date gets closer. It contains important information about what you need to do before your treatment. Write down any questions you have and be sure to ask your doctor or nurse.

Preparing for Your Treatment

Meet With Your Doctor and Nurse Practitioner

You will meet with your doctor and nurse practitioner (NP) before you begin treatment. They will review the details of the treatment, including side effects and what to expect before, during, and after your treatment. You will be asked to sign a consent form. Your doctor or NP may also recommend that you see other healthcare providers, such as a child life specialist or social worker.

Your treatment team will include your doctor, NP, research nurse, nuclear medicine doctor, and radiation safety officer. Your radiation safety officer will go over the safety precautions that you will need to follow during your treatment.

A financial counselor will be available to meet with you to discuss any insurance issues. Please bring all your insurance information to the appointment. If you have any questions, call Patient Financial Services at (212) 639-7925.

Please bring the following with you to your appointment:

  • A list of all the medications you take, including patches and creams
  • Insurance card
  • The name(s) and telephone number(s) of your doctor(s)

Location and Parking

Your appointment will be at the Pediatric Day Hospital (PDH). The PDH is located at the main hospital.

Memorial Hospital
1275 York Avenue (between East 67th and East 68th Streets)
New York, NY 10065
Take the B elevator to the 9th floor

Parking at the main hospital is available in the garage on East 66th Street between York and First Avenues. To reach the garage, enter East 66th Street from York Avenue. The garage is located about a quarter of a block in from York Avenue, on the right-hand (north) side of the street. There is a pedestrian tunnel that goes from the garage into the hospital. If you have questions about prices, call (212) 639-2338.

There are also other parking garages located on East 69th Street between First and Second Avenues, East 67th Street between York and First Avenues, and East 65th Street between First and Second Avenues.

Housing

The Ronald McDonald House provides temporary housing for out-of-town pediatric cancer patients and their families.

MSK also has arrangements with several local hotels and housing facilities that may give you a special reduced rate. Your social worker can discuss your options and make reservations.

For questions about housing, call the Social Work service at (212) 639-7041 (neuro-oncology patients) or (212) 639-7011 (neuroblastoma patients).

Tumor Testing

Depending on the type of tumor you have, you may need testing to see if the antibody will attach itself to the tumor. If the antibody does not attach itself to the tumor, you cannot have intrathecal RIT. Your doctor will discuss this with you.

Ommaya Reservoir or Programmable VP Shunt Reservoir

During your treatment, the antibody will be injected directly into either an Ommaya reservoir or a programmable VP shunt reservoir. If you have a nonprogrammable VP shunt, it may be converted to a programmable VP shunt if possible.

If you need to have an Ommaya reservoir placed or your nonprogrammable VP shunt converted to a programmable VP shunt, your doctor or NP will arrange this for you.

Check the box next to which procedure you will have below.

  • Placement of an Ommaya reservoir
    • You will have an Ommaya reservoir placed during a surgery. For more information, please read About Your Ommaya Reservoir Placement Surgery, located in the “Resources” section of this guide.
  • Conversion of a nonprogrammable VP shunt to a programmable VP shunt
    • Your nonprogrammable VP shunt will be converted to a programmable VP shunt during a surgery. For more information about a programmable VP shunt, please read About Your Programmable VP Shunt for Pediatric Patients and Patient Guide to Pediatric Ventriculoperitoneal (VP) Shunt Surgery, located in the “Resources” section of this guide.

If you have a programmable VP shunt, write down your shunt type and pressure setting below. 

  • Type of programmable VP shunt: _________________________
  • Pressure setting: _________________________

Your NP will also give you a wallet card to fill out. Carry it with you at all times

Within 3 Weeks Before the First Antibody Injection

You will need to have the following exams and tests to make sure that it is safe for you to have antibody therapy:

  • Physical exam
  • Neurological exam
  • Blood tests to check your blood counts and kidney, liver, and thyroid function
  • Pregnancy test for females of childbearing age
  • Tests to check for cancer cells in your CSF
  • Magnetic resonance imaging (MRIs) of your brain and spine to make sure there is no new or growing disease
  • CSF flow study to make sure your Ommaya reservoir or programmable VP shunt reservoir is working correctly

Write down the dates and times of your brain and spine MRIs below.

  Date Time
Brain MRI    
Spine MRI    

CSF Flow Study

A CSF flow study is done to make sure that your Ommaya reservoir or programmable VP shunt reservoir is working well. During the flow study, your doctor or NP will inject a radioactive dye into your reservoir. You will have a nuclear medicine scan a few hours later to see how well the dye moves through your CSF. You will have another nuclear medicine scan about 24 hours later, and if necessary, a third scan about 48 hours later.

If you will need to have anesthesia (medication to make you sleepy) during your scans, your doctor or NP will arrange this for you. You will not be able to eat or drink anything for a certain amount of time before the scans. Your NP will go over these guidelines with you. If you do not follow these guidelines, your scans may be cancelled.

Write down your eating and drinking guidelines before your scans below. 





5 to 7 Days Before the First Antibody Injection

You will start taking medications called potassium iodide (SSKI) and liothyronine (Cytomel®) 5 to 7 days before the first antibody injection. These medications will help protect your thyroid during treatment.

You will take these medications every day until 2 weeks after the last antibody injection. For more information about these medications, please read Potassium Iodide and Liothyronine, located in the “Medications” section of this guide.

Write down each dose that you take in your Medication Diary, located in the “Medications” section of this guide. Be sure to write down any missed doses in your diary. Bring the diary to all of your appointments.

Write down the information about taking potassium iodide and liothyronine below.

Start Date End Date Medication Dose How Often
    Potassium iodide (SSKI) 7 drops Once a day
    Liothyronine (Cytomel®)
  • 25 mcg (1 tablet)
  • 37.5 mcg (1 ½ tablets)
  • 50 mcg (2 tablets)
Once a day

The Night Before Each Antibody Injection

The night before each antibody injection, you will take a steroid called dexamethasone (Decadron®). This medication is given to control inflammation. You will also take the dexamethasone:

  • Two times the day of each injection
  • Two times the first day after each injection
  • One time the second day after each injection

You will also take an antacid with the dexamethasone. Take the antacid as prescribed by your doctor. For more information, please see Instructions for Home Medications, located in the “Medications” section of this guide.

Please refer to the dexamethasone schedule for each antibody injection below. You will take a total of 6 doses for each injection.

Write down the dates you will take dexamethasone and the dose below.

  Dates Morning Evening Dose
Night before each antibody injection        
Day of injection (this dose will be given in the PDH)        
1st day after injection        
2nd day after injection        
Back to top

During Your Treatment

The information in this section will tell you what to expect during your treatment, including the procedures you will have and the medications you will take. Write down any questions you have and be sure to ask your doctor or nurse.

The Day of Your Treatment

Where to Go

The antibody injections are given in the PDH, usually on an outpatient basis. Treatment side effects can usually be taken care of in the outpatient clinic, but sometimes patients need to be admitted to the hospital. Your doctor will discuss any possible side effects with you before you begin treatment.

The PDH is located at the main hospital.

Memorial Hospital
1275 York Avenue (between East 67th and East 68th Streets)
New York, NY 10065
Take the B elevator to the 9th floor

See page 6 for parking information and a map of the area.

When to Arrive

Your appointment time will be between 8:00 am and 9:00 am. Please arrive on time.

What to Expect

You will be given a private room in the PDH. Your doctor or NP will give you a physical exam and send blood work to the lab before the injection.

There may be a little bit of wait time before the injection. During this time, you can go to the playroom, use a computer, etc.

Ommaya Reservoir Tap

If you have an Ommaya reservoir, you will have a procedure called an Ommaya reservoir tap during your antibody injections and during routine check-ups after your antibody therapy is finished.

Your doctor or NP will do the procedure at your bedside. You do not need to do anything to prepare for it.

During the procedure, you may be asked to lie on your back. Your doctor or NP will clean the skin over the top of your Ommaya reservoir with Betadine®. Tell your doctor or NP if you’re allergic to iodine and a different solution will be used.

A small needle with tubing attached to it will be inserted into the reservoir. A small amount of your CSF will be taken out through a syringe that is attached to the tubing.

If you’re getting the antibody injection during your tap, your doctor or NP will inject it slowly into your Ommaya reservoir after the sample of your CSF is taken out. This usually does not hurt. Depending on your treatment, you may need to have more samples of your CSF taken after the injection. The needle will be left in your Ommaya reservoir for a few hours after the injection to take these samples.

If you are having a tap during a routine check-up after your antibody therapy is finished, a sample of your CSF will be taken and the needle will be removed right away.

You do not need to follow any restrictions after the tap. You can wash your hair as usual.

Programmable VP Shunt Reservoir Tap

The procedure for a programmable VP shunt reservoir tap is almost the same as an Ommaya reservoir tap, as described on page 12. The only difference is that the shunt is turned off before the antibody injection. It will stay off for about 4 hours after the injection.

Test Dose Injection

Your first antibody injection is called a test dose. Your doctor will inject a small amount of the antibody into your Ommaya reservoir or programmable VP shunt reservoir. After the injection, the tube coming from your Ommaya reservoir or programmable VP shunt reservoir will be carefully taped to your head for several hours. This will allow for samples of your CSF to be taken at various times.

Before the Test Dose Injection

Before your doctor or NP gives you the injection, samples of your blood and CSF will be taken.

You will be given antinausea medication, acetaminophen (Tylenol®) to prevent fever, an antihistamine to prevent an allergic reaction, and pain medication.

After the Test Dose Injection

You do not need to follow any radiation precautions after the injection. There are no restrictions for being around pregnant women after the injection.

30 minutes to 4 hours after the test dose injection

Samples of your blood and CSF will be taken about every hour for 4 hours after the injection.

1 hour after the test dose injection

About 1 hour after the injection, you will be given an antibiotic medication through an intravenous (IV) line to help prevent infection.

4 hours after the test dose injection

About 4 hours after the injection, you will have:

  • Your first nuclear medicine scan
  • An Ommaya reservoir or programmable VP shunt reservoir tap
  • Blood samples taken

Write down the date and time of your first nuclear medicine scan below.

Date: ____________________  Time: ____________________

Every 4 to 6 hours for 24 hours after the test dose injection

You can take acetaminophen every 4 hours for 24 hours after the injection to prevent fever and pain. You can also take antinausea and pain medications as directed by your doctor. Your NP will go over these medications with you.

For more information about home medications, please see Instructions for Home Medication, located in the “Medications” section of this guide.

24 hours after the test dose injection

About 24 hours after the injection, you will have:

  • Your second nuclear medicine scan
  • An Ommaya reservoir or programmable VP shunt reservoir tap
  • Blood samples taken

Write down the date and time of your second nuclear medicine scan below.

Date: ____________________  Time: ____________________

Instructions:

  • Continue to take the dexamethasone twice a day with the antacid.
  • Continue to take the potassium iodide and liothyronine every day until the end date written in the table on page 9.
48 hours after the test dose injection

About 48 hours after the injection, you will have:

  • Your third nuclear medicine scan
  • An Ommaya reservoir or programmable VP shunt reservoir tap
  • Blood samples taken

Write down the date and time of your third nuclear medicine scan below.

Date: ____________________  Time: ____________________

Instructions:

  • Take the last dose of dexamethasone with the antacid.
  • Continue to take the potassium iodide and liothyronine every day until the end date written in the table on page 9.

Treatment Dose Injections

One week after the test dose injection, you will start getting the full antibody dose injections. This is also called the treatment dose. You will follow the same procedures that you did for the test dose injection. However, you will not need to have any nuclear medicine scans after the injections.

Depending on the type of antibody you will be receiving, you may have blood and CSF samples taken after the injections.

The injections are given in what are called rounds or cycles. The number of rounds you have will depend on your treatment plan. Your doctor will discuss this with you.

Radiation Safety Precautions

After the injection, your radiation safety officer will talk with you about what precautions you will need to follow. You also will be given written guidelines to follow.

Tell your radiation safety officer if anyone who is caring for you is pregnant or if you are staying at the Ronald McDonald House.

Back to top

After Your Treatment

The information in this section will tell you what to expect after your treatment. Write down any questions you have and be sure to ask your doctor or nurse.

2 Weeks After the Last Treatment Dose Injection

You can stop taking the potassium iodide and liothyronine 2 weeks after the last treatment dose injection. This end date is written in the table on page 9. Ask your doctor or NP to confirm this date with you.

Complete the Medication Diary in the “Medications” section of this guide and give it to your doctor or NP.

3 Weeks After the Last Treatment Dose Injection

About 3 weeks after the last test dose injection, you will have:

  • MRIs of your brain and spine
  • An Ommaya reservoir or programmable VP shunt reservoir tap
  • Blood samples taken
  • A physical exam

Write down the date and time of your MRI scans below

  Date Time
Brain MRI    
Spine MRI    

Follow-up Care

After your antibody therapy is finished, you will have a follow-up appointment with your doctor and NP.

Write down the date and time of your follow-up appointment below.

Date: ____________________  Time: ____________________

When to Call Your Doctor or NP

Call your doctor or NP immediately if you have:

  • A temperature of 100.4° F (38.0° C) or higher
  • Increased pain
  • Increased sleepiness
  • Severe headaches
  • Severe nausea and vomiting
  • Any other questions or concerns

Contact Information

If you have any questions or concerns, please talk with your doctor or NP. You can reach them Monday through Friday from 9:00 am to 5:00 pm. Call the office directly at (212) 639-3751 (neuro-oncology patients) or (212) 639-6410 (neuroblastoma patients).

After 5:00 pm, during the weekend, and on holidays, please call (212) 639-2000 and ask for the pediatric oncology fellow on call.

To speak with a social worker, call:

(212) 639-7041 (neuro-oncology patients)
(212) 639-7011 (neuroblastoma patients)

Back to top

Medications

The information in this section contains important information about what medications you will take before and after your treatment. Read through this section before your treatment so that you are prepared. Write down any questions you have and be sure to ask your doctor or nurse.

Medication Diary

Please initial in each box when the medication is taken. Bring this form to all of your appointments.

Date Time Medication
    Potassium iodide (SSKI) Dose Initials Liothyronine (Cytomel®) Dose Initials
    7 drops

 

  • 25 mcg (1 tablet)
  • 37.5 mcg (1 ½ tablets)
  • 50 mcg (2 tablets)
 
    7 drops

 

  • 25 mcg (1 tablet)
  • 37.5 mcg (1 ½ tablets)
  • 50 mcg (2 tablets)
 
    7 drops

 

  • 25 mcg (1 tablet)
  • 37.5 mcg (1 ½ tablets)
  • 50 mcg (2 tablets)
 
    7 drops

 

  • 25 mcg (1 tablet)
  • 37.5 mcg (1 ½ tablets)
  • 50 mcg (2 tablets)
 
    7 drops

 

  • 25 mcg (1 tablet)
  • 37.5 mcg (1 ½ tablets)
  • 50 mcg (2 tablets)
 
    7 drops

 

  • 25 mcg (1 tablet)
  • 37.5 mcg (1 ½ tablets)
  • 50 mcg (2 tablets)
 
    7 drops

 

  • 25 mcg (1 tablet)
  • 37.5 mcg (1 ½ tablets)
  • 50 mcg (2 tablets)
 
    7 drops

 

  • 25 mcg (1 tablet)
  • 37.5 mcg (1 ½ tablets)
  • 50 mcg (2 tablets)
 
    7 drops

 

  • 25 mcg (1 tablet)
  • 37.5 mcg (1 ½ tablets)
  • 50 mcg (2 tablets)
 
    7 drops

 

  • 25 mcg (1 tablet)
  • 37.5 mcg (1 ½ tablets)
  • 50 mcg (2 tablets)
 
    7 drops

 

  • 25 mcg (1 tablet)
  • 37.5 mcg (1 ½ tablets)
  • 50 mcg (2 tablets)
 
    7 drops

 

  • 25 mcg (1 tablet)
  • 37.5 mcg (1 ½ tablets)
  • 50 mcg (2 tablets)
 
    7 drops

 

  • 25 mcg (1 tablet)
  • 37.5 mcg (1 ½ tablets)
  • 50 mcg (2 tablets)
 
    7 drops

 

  • 25 mcg (1 tablet)
  • 37.5 mcg (1 ½ tablets)
  • 50 mcg (2 tablets)
 
    7 drops

 

  • 25 mcg (1 tablet)
  • 37.5 mcg (1 ½ tablets)
  • 50 mcg (2 tablets)
 
    7 drops

 

  • 25 mcg (1 tablet)
  • 37.5 mcg (1 ½ tablets)
  • 50 mcg (2 tablets)
 

Participant signature: _________________________ Date: _________________________

Reviewer’s signature: _________________________ Date reviewed/signed: _________________________

Instructions for Home Medications

Before the Injections

  • Dexamethasone (Decadron®)
    • Instructions: Take ________ mg by mouth twice a day, starting the night before injection and continue for a total of 6 doses. On the days of injection, you will receive this medication in the PDH.
  • Ranitidine (Zantac®)
    • Instructions: Take ________ mg by mouth twice a day on the days when you take the dexamethasone. On the days of injection, you will receive this medication in the PDH.


After the Injections

  • Hydromorphone (Dilaudid®)
    • Instructions: Take ________ mg by mouth every 4 to 6 hours if needed for headache or pain.
  • Hydroxyzine (Vistaril®)
    • Instructions: Take ________ mg by mouth every 4 to 6 hours if needed for nausea/vomiting.
  • Lorazepam (Ativan®)
    • Instructions: Take ________ mg by mouth every 4 to 6 hours if needed for nausea/vomiting or agitation.
  • Ondansetron (Zofran®)
    • Instructions: Take ________ mg by mouth every 8 hours if needed for nausea/vomiting. On days of injection, you will receive this medication in the PDH.
  • Acetaminophen (Tylenol®)
    • Instructions: Take ________ mg by mouth every 4 to 6 hours for 24 hours after the injection and then every 6 hours as needed for headache/body aches.

Please remember to take the potassium iodide (SSKI) and liothyronine (Cytomel®) every day until you are told to stop. Please refer to the Medication Diary for more information.

Contact Information

If you have any questions or concerns, please talk with your doctor or NP. You can reach them Monday through Friday from 9:00 am to 5:00 pm. Call the office directly at (212) 639-3751 (neuro-oncology patients) or (212) 639-6410 (neuroblastoma patients).

After 5:00 pm, during the weekend, and on holidays, please call (212) 639-2000 and ask for the pediatric oncology fellow on call.

Potassium Iodide

www.mskcc.org/cancer-care/patient-education/potassium-iodide-01

Liothyronine

www.mskcc.org/cancer-care/patient-education/liothyronine-01

Back to top

Last Updated