Talking to your doctor about AZEDRA
It is important to talk to your doctor about your treatment.
Here are some tips to keep in mind when talking with your healthcare professional:
- Speak up about what is important to you—understanding your priorities will help your doctor advise the most suitable treatment option for your disease
- Take plenty of notes and do not hesitate to ask clarifying questions
- If you do not understand something your doctor says, ask for a simpler explanation
Preparing for an appointment with your doctor
As you prepare for your appointment with your doctor, you may want to:
- Write down questions you have in advance so you do not forget to ask
- Bring a notebook or audio recorder so you can record your doctor’s answers
- Ask a family member or friend to come with you for support, and to ask any questions you may not think of
Not an actual patient.
Questions to ask your doctor
Your doctor can be a great resource for any questions you have about pheochromocytoma, paraganglioma, and AZEDRA. Here are some questions you may want to ask.
General information related to you
- What treatment do you recommend for my pheochromocytoma or paraganglioma and why?
- Do I qualify for AZEDRA treatment?
- What are the characteristics of a suitable AZEDRA candidate?
General information related to your doctor
- Do you have experience with AZEDRA?
- Have you ever referred a patient for AZEDRA treatment? If not, is there someone I can talk to who has?
- Would you consider AZEDRA if you had pheochromocytoma or paraganglioma?
Treatment with AZEDRA
- Who will be a part of my treatment team and what does each member do?
- How long will I need to be in the hospital and how will my discharge date be decided?
- What can I do while I am in the hospital following AZEDRA treatment?
- Who is allowed to visit, and what are the precautions they would need to take?
- What are the common side effects of AZEDRA?
- For a patient like me, what are the expected results for AZEDRA treatment?
After treatment with AZEDRA
- How should I expect to feel after I leave the hospital?
- What follow-up tests do I need after AZEDRA treatment, and how often will I need them?
- When will I come back to see you after AZEDRA treatment?
The AZEDRA Service Connection® Program
The AZEDRA Service Connection Program supports providing patients access to AZEDRA. The AZEDRA Service Connection team enables an easy ordering process that helps coordinate the reimbursement, billing, scheduling, and handling of AZEDRA with your selected radiopharmacy and cancer center.
Hours: 8:00 am to 5:00 pm EST, Monday to Friday
Patient Access Specialists
The AZEDRA Service Connection Patient Access Specialists provide one-on-one phone assistance on matters such as financial support and reimbursement assistance to you and your family if you are prescribed AZEDRA. Patient Access Specialists can review financial support programs and also refer you to independent, third-party organizations for support*, including help finding transportation and lodging assistance.*†
If you have commercial insurance and have challenges affording the out-of-pocket costs, the AZEDRA Service Connection can provide assistance identifying options regarding copay, coinsurance, and deductible expenses.
AZEDRA Service Connection can also assist with the costs of traveling to a treatment facility for AZEDRA.*†
Patient assistance, which may include providing AZEDRA at no cost, is available to you if you are uninsured and meet program eligibility requirements.
AZEDRA Service Connection is a complimentary program and provides a simple enrollment process for patients.
*Provided through independent third-party foundations (501(c)(3), tax-exempt nonprofit organizations). AZEDRA Service Connection Program has no control over independent, third-party programs and provides connections as a courtesy only.
†Based on program eligibility.
Frequently Asked Questions
What is AZEDRA?
AZEDRA is a systemic radiation therapy made up of a targeting component (called MIBG) that recognizes and binds to a specific target, and a treatment component (I-131) that delivers radiation to the target after it is located. These components work together to target cells that have norepinephrine transporters, such as most pheochromocytoma and paraganglioma tumors, and treat them with radiation.
How is AZEDRA different from other treatments for pheochromocytoma and paraganglioma?
AZEDRA is the only FDA-approved treatment for unresectable, locally advanced, or metastatic pheochromocytoma and paraganglioma based on results of the largest clinical trial of its kind for this disease. AZEDRA was clinically proven to reduce the need for hypertension medication and control the growth of tumors, addressing the dual treatment goals of advanced pheochromocytoma and paraganglioma.
What is MIBG avidity and how is it assessed?
MIBG avidity describes how well a tumor binds to I-131 MIBG. The avidity of a pheochromocytoma or paraganglioma tumor may be measured before a patient receives AZEDRA to determine if he or she is a candidate for treatment.
How is AZEDRA given?
AZEDRA is given in a hospital by doctors who are licensed and trained in the handling and administration of radiation therapies. There are two steps to AZEDRA therapy. In the first step, you are given a very small dose of AZEDRA. Over the next few days, you receive three body scans to check where AZEDRA is going in your body. This is called dosimetry. In the second step, you are given an infusion of a larger treatment dose of AZEDRA over approximately 30 minutes, followed by a short hospital stay. An additional treatment dose is administered approximately 90 days later.
Who administers AZEDRA?
AZEDRA may only be administered in a specialized cancer treatment center equipped to provide care and support to patients receiving radiation therapy. AZEDRA will be handled and administered by a treatment team of qualified and trained healthcare providers.
What are some of the risks of receiving AZEDRA?
The most common side effects of treatment include:
- Lymphopenia—A decrease in the number of lymphocytes, a class of white blood cell that helps fight infections
- Neutropenia—A decrease in the number of neutrophils, another class of white blood cell that helps fight infections
- Thrombocytopenia—A decrease in the number of platelets, which are cellular structures involved in blood clotting
- Anemia—A decrease in the levels of hemoglobin, an iron-bearing protein found in red blood cells
- Increased international normalized ratio—A measure of how quickly blood coagulates or solidifies; when increased, blood may clot more slowly
- Hypertension—Increase in blood pressure to 140/90 or higher
What radiation precautions should I take after treatment?
AZEDRA contributes to your overall long-term radiation exposure. After treatment, you will need to remain in the observation room for a few days while the radiation treating your tumors is strongest. After you leave the hospital, as the radiation in your body decreases, your doctor will give you additional instructions about how to minimize any radiation exposure to those around you.
Epinephrine and norepinephrine (adrenaline and noradrenaline)
Two types of hormones created by neuroendocrine cells. Known as catecholamines, these hormones are triggered during times of stress as part of the “fight or flight” response and prepare the body for increased activity by doing things like raising heart rate and blood pressure.
External-beam radiation therapy
The most common type of radiation therapy used to treat cancer. A machine is used to aim high-energy rays (or beams) from outside the body into the tumor.
A chemical that mimics norepinephrine. It may be used to diagnose, image, or treat tumor cells that express the norepinephrine transporter.
Iodine 131 (I-131)
A radioactive form of iodine that can be used inside the body to destroy cancer cells using radiation.
A method of slowly injecting fluids, including drugs, into the bloodstream. It is also sometimes called intravenous infusion or IV.
Disease that has spread into nearby tissues.
A tumor made up of cancer cells that divide without control and can spread to nearby tissue and/or distant locations.
Disease that has spread to other parts of the body.
A molecule that is actively internalized by cells that have norepinephrine transporters, including most pheochromocytoma and paraganglioma tumor cells.
A term used to describe a cell or group of cells that is able to bind to MIBG. Most pheochromocytoma and paraganglioma tumors are MIBG avid, which means treatments like AZEDRA that contain MIBG can be used to target these tumors.
A condition in which bone marrow activity is decreased, resulting in fewer red blood cells, white blood cells, and/or platelets.
A type of cell that uses hormones or chemicals to relay messages from the brain to different muscles and organs in the body.
A protein on the surface of some cells, including pheochromocytoma and paraganglioma tumor cells, that transports norepinephrine into the cell. MIBG, which is similar to norepinephrine, can also be carried by the norepinephrine transporter.
Genes which, when mutated, may increase your risk for certain diseases like pheochromocytoma or paraganglioma. Genes provide instructions for making proteins, one of the building blocks of cells. Mutations change the instructions, which can cause a protein to malfunction or to be missing entirely. If the missing or damaged protein plays an important role in the body, this can lead to disease.
Systemic radiation therapy
A type of radiation therapy that can find and destroy tumor cells from inside the body, unlike external beam therapy, which more broadly radiates an entire section of the body from the outside.
A term used to describe a tumor or set of tumors that cannot be removed with surgery.
A comprehensive tool for patients
The AZEDRA Patient Brochure
The AZEDRA Patient Brochure is designed to help you gain a better understanding of pheochromocytoma and paraganglioma and how treatment with AZEDRA could be the right option for you.