About Your Intrathecal Radioimmunotherapy (RIT) for Pediatric Patients

This guide will help you prepare for your intrathecal radioimmunotherapy (RIT) at Memorial Sloan Kettering (MSK). It will also help you understand what to expect during your treatment.

Read through this guide and use it as a reference. Bring this guide with you every time you come to MSK, including the day of your treatment. You and your healthcare team will refer to it throughout your care.

For the rest of this resource, our use of the words “you” and “your” refers to you or your child.

About Intrathecal RIT and Monoclonal Antibodies

MSK is doing a clinical trial (research study) using a treatment called intrathecal radioimmunotherapy (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. Here are common questions about intrathecal RIT.

What is an antibody?

An antibody is a protein that is made by your body’s immune system and released into your blood. Antibodies fight against harmful substances, such as bacteria, fungi, parasites, and viruses.

What is a radiolabeled 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 radioimmunotherapy (RIT).

What happens during intrathecal RIT?

During intrathecal RIT, the monoclonal antibody is injected directly into your CSF through an Ommaya reservoir. An Ommaya reservoir 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.

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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 your appointment. If you have any questions, call Patient Financial Services at 212-639-3810.

Talk With Your Social Worker About Housing, If Needed

The Ronald McDonald House provides temporary housing for out-of-town pediatric 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 department at 212-639-7020.

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 doesn’t attach itself to the tumor, you can’t have intrathecal RIT. Your doctor will discuss this with you.

Intraventricular Access Device

Ommaya Reservoir or Programmable VP Shunt Reservoir

During your treatment, the antibody will be injected directly into either your 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.

You will have 1 of the following procedures:

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

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Within 3 Weeks Before Your First Antibody Injection

You will need to have the following exams and tests to make sure that it’s 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
  • Neurocognitive function testing, if you’re 3 years old or older. This is done to test your thinking, learning, and memory.
  • Quality of Life testing, if you’re 5 years old or older. This is done to check your overall well-being, feelings, and emotions.

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.

Scans with Anesthesia

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 your scans. Your NP will go over these guidelines with you. If you do not follow these guidelines, your scans may be canceled.

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5 to 7 Days Before Your First Antibody Injection

Take Your Potassium Iodide (SSKI®) and Liothyronine (Cytomel®)

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

You will take these medications every day until 2 weeks after your last antibody injection. For more information about these medications, read our Potassium Iodide and Liothyronine resources.

Follow the guidelines in the table below:

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

Your doctor or NP will give you a medication diary. Write down each dose that you take in your medication diary. Be sure to write down any missed doses in your diary. Bring your diary to all your appointments.

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The Night Before Each Antibody Injection

Take Your Dexamethasone (Decadron®) and Antacid

The night before each antibody injection, you will take a steroid called dexamethasone (Decadron®). This medication is given to control inflammation (swelling and redness).

You will take a total of 6 doses of dexamethasone for each injection:

  • 1 time the night before each injection
  • 2 times in clinic on the day of your injection. Your doctor or nurse will give it to you.
  • 2 times the day after each injection
  • 1 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, read the “Instructions for Home Medications” section of this guide.

Refer to the dexamethasone and antacid schedule below for each antibody injection. Remember, you will take a total of 6 doses of dexamethasone for each injection. Two of these doses will be given to you at the Pediatric Ambulatory Care Center (PACC).

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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

Your appointment will be at the Pediatric Ambulatory Care Center (PACC). The PACC is located at Memorial Hospital (MSK’s main hospital). The address is:

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 PACC

MSK's parking garage

MSK’s parking garage is located on East 66th Street between York and First Avenues. If you have questions about prices, call 212-639-2338.

To reach the garage, turn onto 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 you can walk through that connects the garage to the hospital.

There are also other 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.

When to Arrive

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

What to Expect

Your antibody injections will be given in the PACC, usually on an outpatient basis. Side effects of your treatment can usually be taken care of in the outpatient clinic. Some people will need to be admitted to the hospital.

You will be given a private room in the PACC. Your doctor or NP will give you a physical exam and a blood test before each injection.

You will need to wait for a few hours between having your blood work done and getting your antibody injection. During this time, you can go on the computer or play in the playroom.

Ommaya Reservoir Tap

If you have an Ommaya reservoir, you will have a procedure called an Ommaya reservoir tap done during your antibody injections. You may also have it done during some of your routine check-ups after your antibody therapy is finished. For more information, read our Frequently Asked Questions About Ommaya Reservoirs and Ommaya Taps for Pediatric Patients resource.

Your doctor or NP will do this procedure at your bedside. You don’t need to do anything to prepare for it.

During your 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 providone-iodine (Betadine®). Tell your doctor or NP if you’re allergic to iodine.  They will use a different solution.

A small needle with tubing attached to it will be inserted into your 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 doesn’t hurt. Depending on your treatment, you may need to have more samples of your CSF taken after the injection. The needle may be left in your Ommaya reservoir for a few hours after your injection to take these samples.

If you’re 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 don’t 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. The only difference is that the shunt is turned off before your antibody injection. It will stay off for about 4 hours after your injection and then changed back to the original setting.

Tell your doctor, nurse, or NP if you have a headache, pain, nausea, or vomiting while your shunt is turned off.

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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 let your doctor take samples of your CSF, if needed.

Before Your Test Dose Injection

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

You will be given antinausea medication, acetaminophen (Tylenol®) to prevent fever, and an antihistamine to prevent an allergic reaction. You may also get pain medication or medication to help with anxiety.

After Your Test Dose Injection

Radiation Safety Precautions

*Tell us if anyone who is caring for you is pregnant.

Your radiation safety officer will talk with you about what precautions you will need to follow after your test dose.

1 to 4 hours after your first test dose injection

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

*This will only be done after your first test dose injection.

1 hour after your test dose injection

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

4 hours after your first test dose injection

About 4 hours after your first injection, you will have:

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

*This will only be done after your first test dose injection.

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

You can take acetaminophen (Tylenol®) every 4 to 6 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, read the “Instructions for Home Medications” section of this guide.

24 hours after your first test dose injection

Scans and tests

About 24 hours after your first injection, you will have:

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

*This will only be done after your first test dose injection.

Take your medications

  • Continue to take the dexamethasone twice a day with an antacid.
  • Continue to take the potassium iodide and liothyronine every day until the end date your doctor gave you.

48 hours after your first test dose injection

Scans and tests

About 48 hours after your first injection, you will have:

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

Take your medications

  • Take the last dose of dexamethasone with an antacid.
  • Continue to take the potassium iodide and liothyronine every day until the end date your doctor gave you.
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Treatment Dose Injections

One week after your test dose injection, you will start getting the full antibody dose injections. This is also called the treatment dose. You won’t need to have any blood samples taken, Ommaya or programmable VP shunt reservoir taps, or nuclear medicine scans after the treatment dose injection.

The injections are given in 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 you get your treatment dose injection, you will be radioactive for a period of time. You will need to be careful so that people near you have limited radiation exposure. Some of the radioiodine will leave your body through urine (pee) and bodily secretions.

Tell us if anyone who is caring for you is pregnant or if you’re staying at the Ronald McDonald House.

Your radiation safety officer will talk with you about what precautions you will need to follow. You will also get written guidelines to follow.

You will be given a post therapy radiation safety wallet card that will summarize your treatment. Keep this with you at all times. If you need emergency medical care, or if you’re stopped by security, show this card.

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After Your Treatment

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

During the 2 weeks after your treatment dose injection, you will be seen in the clinic for physical exams and blood tests, usually once a week. If you return home, you will have to be seen by your home oncologist (cancer doctor) for physical exams and blood tests.

2 weeks after your treatment dose injection

You can stop taking the potassium iodide and liothyronine 2 weeks after your treatment dose injection. Stop taking these medication on the end date your doctor gave you. Ask your doctor or NP to confirm this date with you.

Complete your Medication Diary, sign it, and give it to your doctor or NP.

3 weeks after your treatment dose injection

About 3 weeks after your treatment 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

Follow-up Care

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

You will have neurocognitive function and Quality of Life testing done 3 months after your last treatment dose, then once a year after that.

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Call Your Doctor or NP Right Away 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
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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 the Social Work department at 212-639-7020.

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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’re prepared. Write down any questions you have and be sure to ask your doctor or nurse.

Medication diary

Your doctor or NP will give you a medication diary to record the potassium iodide (SSKI) and liothyronine (Cytomel) you take. Please write your initials in each box when you take your medication. Be sure to write down any missed doses in your diary. Bring your diary to all your appointments.

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Instructions for Home Medications

Before Your Injections

  • Dexamethasone (Decadron®)
    • Instructions: Take ________ mg by mouth twice a day, starting the night before your injection. Follow the instructions given on page 7 for the rest of your doses. On the days of injection, you will receive this medication in the PACC.
  • 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 PACC.

 After Your 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 or 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 or vomiting. On days of injection, you will receive this medication in the PACC.
  • 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 or body aches.

Remember to take the potassium iodide (SSKI) and liothyronine (Cytomel®) until the end date your doctor gave you. Please refer to your Medication Diary for more information.

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Resources

This section includes a list of MSK support services, as well as the resources that were referred to throughout this guide. These resources will help you prepare for your surgery and recover safely. Write down any questions you have and be sure to ask your doctor or nurse.

Educational Resources

MSK Support Services

Anesthesia
212-639-6840
Call if you have any questions about anesthesia.

Blood Donor Room
212-639-7643
Call for more information if you’re interested in donating blood or platelets.

Bobst International Center
888-675-7722
MSK welcomes patients from around the world. If you’re an international patient, call for help arranging your care.

Chaplaincy Service
212-639-5982
At MSK, our chaplains are available to listen, help support family members, pray, contact community clergy or faith groups, or simply be a comforting companion and a spiritual presence. Anyone can request spiritual support, regardless of formal religious affiliation. The interfaith chapel is located near the main lobby of Memorial Hospital and is open 24 hours a day. If you have an emergency, please call the hospital operator and ask for the chaplain on call.

Counseling Center
646-888-0200
Many people find that counseling helps them. We provide counseling for individuals, couples, families, and groups, as well as medications to help if you feel anxious or depressed.

Integrative Medicine Service
646-888-0800
Integrative Medicine Service offers many services to complement (go along with) traditional medical care, including music therapy, mind/body therapies, dance and movement therapy, yoga, and touch therapy.

Patient and Caregiver Support Program
212-639-5007
You may find it comforting to speak with a cancer survivor or caregiver who has been through a similar treatment. Through our Patient and Caregiver Support Program, you’re able to speak with former patients and caregivers.

Patient Billing
646-227-3378
Call if you have any questions about preauthorization with your insurance company. This is also called preapproval.

Patient Representative Office
212-639-7202
Call if you have questions about the Health Care Proxy form or if you have concerns about your care.

Perioperative Nurse Liaison
212-639-5935
Call if you have questions about MSK releasing any information while you’re having surgery.

Private Duty Nursing Office
212-639-6892
You may request private nurses or companions. Call for more information.

Resources for Life After Cancer (RLAC) Program
646-888-8106
At MSK, care doesn’t end after active treatment. The RLAC Program is for patients and their families who have finished treatment. This program has many services, including seminars, workshops, support groups, counseling on life after treatment, and help with insurance and employment issues.

Social Work
212-639-7020
Social workers help patients, family, and friends deal with issues that are common for cancer patients. They provide individual counseling and support groups throughout the course of treatment, and can help you communicate with children and other family members. Our social workers can also help refer you to community agencies and programs, as well as financial resources if you’re eligible.

Tobacco Treatment Program
212-610-0507
If you want to quit smoking, MSK has specialists who can help. Call for more information.

For additional online information, visit LIBGUIDES on MSK’s library website at http://library.mskcc.org. You can also contact the library reference staff at 212-639-7439 for help.

External Resources

Access-A-Ride
web.mta.info/nyct/paratran/guide.htm
877-337-2017
In New York City, the MTA offers a shared ride, door-to-door service for people with disabilities who can’t take the public bus or subway.

Air Charity Network
www.aircharitynetwork.org
877-621-7177
Provides travel to treatment centers.

American Cancer Society (ACS)
www.cancer.org
800-ACS-2345 (800-227-2345)
Offers a variety of information and services, including Hope Lodge, a free place for patients and caregivers to stay during cancer treatment.

CancerCare
www.cancercare.org
800-813-4673
275 Seventh Avenue (Between West 25th & 26th Streets)
New York, NY 10001
Provides counseling, support groups, educational workshops, publications, and financial assistance.

Cancer Support Community
www.cancersupportcommunity.org
Provides support and education to people affected by cancer.

Caregiver Action Network
www.caregiveraction.org
800-896-3650
Provides education and support for people who care for loved ones with a chronic illness or disability.

Corporate Angel Network
www.corpangelnetwork.org
866-328-1313
Offers free travel to treatment across the country using empty seats on corporate jets.

Gilda’s Club
www.gildasclubnyc.org
212-647-9700
A place where men, women, and children living with cancer find social and emotional support through networking, workshops, lectures, and social activities.

Healthwell Foundation
www.healthwellfoundation.org
800-675-8416
Provides financial assistance to cover copayments, health care premiums, and deductibles for certain medications and therapies.

Joe’s House
www.joeshouse.org
877-563-7468
Provides a list of places to stay near treatment centers for people with cancer and their families.

LGBT Cancer Project
http://lgbtcancer.com/
Provides support and advocacy for the LGBT community, including online support groups and a database of LGBT-friendly clinical trials.

LIVESTRONG Fertility
www.livestrong.org/we-can-help/fertility-services
855-744-7777
Provides reproductive information and support to cancer patients and survivors whose medical treatments have risks associated with infertility.

National Cancer Institute
www.cancer.gov
800-4-CANCER (800-422-6237)

National Cancer Legal Services Network
www.nclsn.org
Free cancer legal advocacy program.

National LGBT Cancer Network
www.cancer-network.org
Provides education, training, and advocacy for LGBT cancer survivors and those at risk.

Needy Meds
www.needymeds.org
Lists Patient Assistance Programs for brand and generic name medications.

NYRx
www.nyrxplan.com
Provides prescription benefits to eligible employees and retirees of public sector employers in New York State.

Patient Access Network Foundation
www.panfoundation.org
866-316-7263
Provides assistance with copayments for patients with insurance.

Patient Advocate Foundation
www.patientadvocate.org
800-532-5274
Provides access to care, financial assistance, insurance assistance, job retention assistance, and access to the national underinsured resource directory.

RxHope
www.rxhope.com
877-267-0517
Provides assistance to help people get medications that they have trouble affording.

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