UCSF Compassionate-Use Protocol for 131I-MIBG Therapy: Tips for Patients with Metastatic Pheochromocytoma and Paraganglioma

Tips about MIBG Therapy for Patients & Family

University of California San Francisco


I-131 (131I) is a radioisotope also known as “radioiodine”.  Metaiodobenzylguanidine (MIBG) is a compound that most paragangliomas and pheochromocytomas actively absorb.  The 131I radioisotope can be chemically attached to MIBG to produce 131I-MIBG, a compound that these tumors absorb, thereby radiating them from the inside.

131I-MIBG (MIBG) was first used as a cancer treatment at the University of Michigan.  Since then, several medical centers around the world have administered MIBG therapies.  We administer MIBG under a UCSF Comprehensive Cancer Center compassionate use protocol.

Preparing for MIBG Therapy

You will require different types of scans to determine the exact location and size of the tumors.  Scans with a small dose of MIBG (“MIBG scan”) will determine whether the tumors will likely absorb sufficient MIBG to shrink them and make them less active.

You will also require blood and urine tests to determine whether you meet “inclusion criteria” (ie, whether treatment would be reasonably safe for you).   Certain additional blood and urine tests measure compounds secreted by the tumor, thus acting as “tumor markers”, reflecting the current activity of your tumor.  You will be asked to collect a “24-hour urine for fractionated catecholamines, fractionated metanephrines, and creatinine.”  Please follow instructions in collecting an accurate 24-hour urine.

Men should consider banking sperm before having MIBG therapy.   Women who are menstruating may receive a medication to reduce menstruation after MIBG therapy.

Medications to Avoid Before MIBG Therapy

Certain drugs interfere with the uptake of MIBG by a pheochromocytoma.  You will be given a list of medications to avoid.  Such medications include labetalol, phenothiazine-derived anti-nausea medications, tricyclic antidepressants, and decongestants.  But check with your UCSF physician before taking a new medication.


Important Documents before MIBG Therapy

Before you can receive MIBG therapy, you’ll sign the “Consent Form”, which explains the possible side effects of the treatment.  The Consent Form must be signed by you and by the physician explaining it to you prior to UCSF Nuclear Medicine ordering the dose of MIBG from a nuclear pharmacy (one week before the scheduled treatment).   You will be given a copy of the signed Consent Form and another document known as the “Patients’ Bill of Rights”.

HIPAA is an acronym for “Health Insurance Portability & Accountability Act of 1996”. Under this US law, you must give signed consent before your health information can be used for research purposes.  You will need to review and sign the HIPAA document before receiving MIBG.

Scheduling MIBG Therapy

Nuclear safety regulations restrict the frequency of MIBG treatments at UCSF.  The UCSF pediatric cancer group also uses MIBG to treat neuroblastoma, a different tumor that arises in children.  They must also reserve treatment dates for their patients, so we use a mutual scheduling coordinator. Your UCSF physician will contact the MIBG scheduling coordinator for a prospective treatment date that will be assigned to you.

We realize that all this will appear to proceed at a frustratingly slow, glacial pace.  Also, additional delays can occur, due to the complex logistics that are explained above. We ask for your understanding if your therapy is rescheduled.  This therapy is usually given on a Friday.  You will be admitted on Thursday afternoon before the treatment on Friday morning.  Expect to stay about one week in the hospital, although the duration of your hospitalization cannot be accurately predicted in advance.  See below.

Where You and Your Family/Friends Can Stay in San Francisco

A list of places to stay around UCSF can be obtained from your UCSF physician.  One place to stay near UCSF is the Stanyan Park Hotel at 750 Stanyan Street: 415-751-1000; www.stanyanpark.com.  Family or friends who wish to stay in the area during your hospitalization must remember that their visiting times are limited by radiation safety regulations.  So family/friends sometimes elect to stay elsewhere in the Bay Area and come in to UCSF for visits.  After discharge from UCSF after MIBG therapy, you may not be able to stay at a public hotel unless your radiation levels are sufficiently low.

What to Bring for Your Hospital Stay

You can wear regular street clothes to the hospital.  You will take them off and store them in a closet to wear after you’re discharged. Bedclothes may become contaminated during radioisotope therapy such that you would need to leave them behind. The hospital provides those wonderful hospital gowns that open in the back.  Some patients like to bring additional bedclothes or slippers but need to be prepared to leave them behind. Bring some toiletries: disposable toothbrush, toothpaste, floss, and mouthwash. The hospital supplies hand soap, towels, and washcloth. Bring your favorite shampoo & conditioner in small travel bottles. There is a sink in the room and shower in your bathroom that you will be able to use on Thursday night and after your bladder catheter is removed on Monday.

You may become rather bored and lonesome since, following the treatment and until you’re discharged, you won’t be allowed to leave your room and loved ones can visit only briefly. So wrap a favorite photograph in cellophane and bring it with you to place on your windowsill or your bedside table. The cellophane keeps it from getting contaminated.  The room has a bedside telephone and television.  Cell phone reception is poor from lead-shielded rooms, but some people have gotten a signal through the window.  So you may bring your cell phone and try it out in the room once you’re there.  Bring a little extra cellophane in case it works and you want to use it.

Most patients have brought laptop computers, wrapped in cellophane; the hospital provides a patient wi-fi system that gets a signal into the lead-shielded room.  Some patients bring iPods or iPhones (wrapped in cellophane), loaded with their favorite songs, along with disposable earphones.  You may wish to bring magazines and paperback books to read.  If you need to wear glasses, bring an old pair; after you’re discharged, you’ll probably be able to wash them sufficiently to bring them home.

Admission Day

On Thursday afternoon before the treatment, you’ll be scheduled to see your                     UCSF physician for a pre-admission examination.  You’ll be given an admission packet that contains protocol orders and information about you and the treatment.  You will then go to UCSF Admissions, which is on the first floor of UCSF Hospital near the Emergency Department.  On your way, stop at the adjacent Gift Shop and purchase some sour lemon drops that can relieve dry mouth and salivary gland discomfort that you may experience after the treatment.  UCSF Admissions will arrange for you to be escorted to 11-Long where a nurse will show you your room, which is one of 3 lead-shielded rooms on that floor.  UCSF Radiation Safety personnel will have your room ready, with the bed and floors wrapped in plastic. Give your admission packet to the nurse to place in your chart.

Later that afternoon, when you’ve settled into your room, your UCSF physicians and nurses will visit you there.  You will have a team of doctors assigned to you.  The team consists of residents, interns, and medical students.  These young doctors are a very select group and they sleep in the hospital to be available for emergencies.  One of them will be assigned to be particularly responsible for you. They will review your history and examine you.   You have a rare tumor and they’ll want to learn more about it and how it has affected you.

On Thursday evening, your will receive your first doses of medications to protect your thyroid against any circulating free 131I from the 131I-MIBG.  You’ll be provided with liquid potassium iodine (KI); your doses will be placed by your bedside and your nurse will instruct you when to take them.  It’s best to take these medications mixed in water or juice.  If it upsets your stomach, please tell the nurse.

A phlebotomist will come by your room to draw admission blood work.  The nurses will start 2 peripheral (arm) intravenous lines on Thursday night.  One line will be used infuse intravenous fluids for several days.  The other line will be used for the infusion of the isotope the next morning; it will be removed after the infusion.

You may possibly need to have a bladder catheter.  If that is the case, it will be inserted Thursday evening and a nurse will pre-medicate you before inserting it.  The bladder catheter will drain into a lead-shielded container by the bedside; from there, it is pumped through a tube to the toilet in your bathroom that has been converted to run constantly.  If you’re anxious or have trouble sleeping, you may ask the nurse for a medication to help you sleep.

Treatment Day

On Friday morning, your nurse will beginning giving you Zofran (ondansetron), an anti-nausea medication that you will take twice daily during your hospital stay.  If you have a bladder catheter or are judged to be at risk for venous clotting, you may receive the first of three daily injections of enoxaparin (Lovenox), an anticoagulant.  This reduces your risk of deep vein thrombosis and pulmonary embolism.

Later on Friday morning, UCSF Radiation Safety personnel will arrive to be sure that the room is safe for the isotope injection.  The nurse will give you a light sedative/anti-emetic.  The UCSF Nuclear Pharmacist will bring the isotope in a lead-shielded container, along with the infusion pump.  He will connect the isotope to your intravenous line.  Before starting the infusion, your family/friends will have a chance to wish you well before leaving the room.  They will receive radiation safety instructions while you are receiving the MIBG.

The infusion of MIBG takes between 1-2 hours.  Your blood pressure and heart rate will be monitored regularly with an automated blood pressure cuff.  If your blood pressure rises excessively, you may be given a capsule (nifedipine) to chew and swallow.

Despite having received prophylactic anti-nausea medication, you may experience some break-through nausea or headache several hours after receiving MIBG.   If you feel nauseated, call the nurse with your call button that is clipped to your bed. Your nurse can give you additional anti-nausea medication. If you develop a severe headache, ask the nurse to call your UCSF physician.

What You’ll Eat in the Hospital

UCSF Food Service will request your meal preferences.  The food isn’t bad, but it isn’t a 4-star restaurant.  Also, after the treatment, Food Service observes radiation precautions and leaves your meal tray outside your door for your nurse to bring to you.  The tray usually gets sufficiently cold to be unappetizing.  If it’s really cold, your nurse may be able to reheat it for you.  You might not have much appetite, so it may not matter.  But consider bringing some favorite snack foods with you.  Also, friends/family are allowed to bring more appetizing food from home, restaurants or the UCSF Cafeteria that is located on the 2nd floor; take the Moffitt elevators, not the Long elevators.  You’ll have no unusual food restrictions.

Your Hospital Stay

Your bed will be in a special lead-shielded room, designed to protect others from radiation.  There will be a portable shield between your bed and the door, next to the bed. Lead aprons don’t work for this sort of radiation, so it’s important that visitors observe radiation precautions and stay on the other side of the lead shield when in the room.  See below.

You will be required to take an oral liquid medication to protect your thyroid gland against radioactive iodine: potassium iodide (KI).   Your nurse will place the KI by your bedside in calibrated syringes and your nurse will remind you to take it every 4 hours, except between midnight and 6AM.  If the KI upsets your stomach, please alert us.

If you develop a dry mouth or discomfort in your salivary glands in your cheeks, you may suck on sour lemon drops.  In the first few days after 131I-MIBG, your lymphocyte count will be low, making you prone to yeast infections.  Tell your doctor if you develop a rash in your groin area or a sore tongue.

You may have a bladder catheter. In that case, it’s important that here not be any leaking; inform your nurse if there is.  The bladder catheter drains into a lead-shielded container; be careful not to pull your catheter out of the container.  While the catheter is in your bladder, you will not be able to leave your bed except for bowel movements for which you’ll use a commode placed by your bedside. Your catheter will be removed about three days after receiving MIBG, but your intravenous line will remain attached.

If you do not have a bladder catheter, you’ll be allowed to walk around the room.  You can roll around the portable IV pole with its bags of intravenous fluids.  But stay back behind the lead shield when a visitor is in the room.  You’ll need to use the toilet in the bathroom; please sit down while going to the bathroom.  You’ll be able to shower and that will feel good; please don’t urinate in the shower, since that would contaminate it.  Several days after MIBG, you will be taken to Nuclear Medicine for a scan to see where and how well the isotope has been absorbed by your tumor.

Radiation Safety Instructions for Family/Friends

Family or close friends (≥ 18 years) will be allowed to visit you with permission from you and UCSF Radiation Safety.  However, nobody who is pregnant or possibly pregnant may visit you after MIBG is administered.  Visitors can receive radiation safety instructions from UCSF Radiation Safety during the infusion of MIBG on Friday. If they do not receive the initial instructions, your nurse can instruct them later.   They will be instructed in how to use a radiation meter and log their name, time, and meter readings before and after visiting you.  They will need to wear a gown, booties, and gloves for protection from radioactivity contamination while in your room.  They will also need to stay on the other side of the lead shield away from you while they are in your room.  They will also need to check their hands and feet with a Geiger counter when leaving the room. All visitors must check in with the nursing station before entering your room.  The amount of time an individual visitor will be allowed in your room will be decided by UCSF Radiation Safety and posted on your door.  Visiting times are minimal on Friday and Saturday after MIBG treatment, but increase daily.

Your Discharge From UCSF

Your day of discharge from the hospital will be determined by your radiation level and by your physical condition.  Both your UCSF physicians and UCSF Radiation Safety must agree that you are ready for discharge.  The typical hospital stay has been 6-8 days, but some patients have needed to stay up to 12 days.  On the day of discharge, Radiation Safety will explain radiation precautions; they will give you a detailed radiation precautions instruction sheet.  They will also give you a wristband that indicates that you have received radioisotope therapy. A nurse will take out your intravenous line.  A pharmacist will review your medications. Your doctor will give you a discharge protocol that will explain your discharge plan and follow-up.  To protect your thyroid, you will receive a prescription for KI (ThyroShield) with instructions to take a dose daily until 30 days after MIBG.

After your discharge following MIBG, you will need to observe radiation precautions to reduce radiation exposure to your family/friends and the general public.  If you will be flying home, you may not be permitted to fly home until your radiation levels have fallen, due to the sardine-like way the airlines pack people into their planes.  Other patients choose to stay in the San Francisco for a few days before returning home in order to be nearby UCSF, particularly if they’re not feeling completely well.  You will not be able to sleep in a hotel room until your radiation is below a safe level.  However, you can stay with family in the area, as long as they receive radiation precautions.  Remember that you will not be allowed to sleep with someone for at least a week after your discharge.

Follow-up After MIBG

It is important that you follow your radiation safety guidelines.  You’ll also need to follow your discharge protocol and see your hematologist/oncologist regularly.  You’ll have blood drawn twice weekly for about 6 weeks or until your blood counts have normalized.  Your platelet count will drop about 3 weeks after receiving MIBG, often low enough to make you prone to bruising and bleeding; you may need platelet transfusions.  Your absolute neutrophil count (ANC) will drop about 3-4 weeks after    MIBG, often low enough to make you prone to infection; you may need injections of GCSF (Neupogen) and prophylactic antibiotics.  Your red blood count may fall low enough that you may require blood transfusions. If you develop any shortness of breath, bleeding, bruising, fever, or any signs of infection, contact your hematologist/oncologist immediately.

About 3-4 months after MIBG, your tumor will be reassessed with scans, blood tests, and possibly a 24-hour urine test if you have a secretory tumor.  MIBG exerts its effect over many months and regular lifetime follow-up is required.

The Complex Logistics of MIBG Therapy

This therapy requires the cooperation of many individuals: yourself, your referring physicians, and UCSF physicians.   We also need the help of UCSF Nuclear Medicine, Nuclear Pharmacy, Radiation Safety, Nurses, the MIBG scheduler, and UCSF Admissions/Bed Control.  We must also obtain authorizations from your insurance company.  MIBG therapy also requires the continued approval of the MIBG Site Committee, the UCSF Committee on Human Research (CHR), the UCSF Comprehensive Cancer Center (CCC) Protocol Committee, the US Food and Drug Administration (FDA), and the US Nuclear Regulatory Commission (NRC).

We obtain the MIBG from an East Coast licensed nuclear pharmacy, which must be up-and-running to synthesize the isotope in the dosage ordered.  Each dose is custom-ordered at least one week before the scheduled treatment.  The MIBG is then delivered to a shipping company that flies the frozen isotope in a lead-shielded container to San Francisco where it is delivered to UCSF.  The MIBG must then be thawed and assayed in a special lead-shielded room by the UCSF Nuclear Pharmacist.  The complex logistics of MIBG therapy are similar to launching a rocket!  So please be patient if a delay occurs.

Dealing with a malignancy is always terrible, even under the best circumstances.  But we hope that these tips will familiarize you and your family with what to expect about MIBG treatment in order to improve your experience at UCSF.

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