Ponatinib (Iclusig®)
Pronounce: poe-na-ti-nib
Classification: Tyrosine Kinase Inhibitor
About Ponatinib (Iclusig®)
This medication is a tyrosine kinase inhibitor.
A kinase is an enzyme that helps a cell grow. There are different types of kinases. Each type affects a different phase of cell growth. Kinase inhibitors slow down the growth of cancer cells.
How to Take Ponatinib
This medication comes as a tablet to take by mouth. It is usually taken once a day, with or without food. Take this medication at around the same time every day. Swallow the tablets whole. Do not crush, chew, or break the tablets. If you miss a dose, take the next dose at the regular time. Do not take 2 doses to make up for the missed dose.
It is important to make sure you are taking the correct amount of medication every time. Before every dose, check that what you are taking matches what you have been prescribed.
The blood levels of this medication can be affected by certain foods and medications, so they should be avoided. These include: grapefruit, grapefruit juice, verapamil, ketoconazole, rifampin, phenytoin, St. John’s wort, and modafinil. Be sure to tell your healthcare provider about all medications and supplements you take.
Storage and Handling
Store your medication in the original container with the label. If you want to use a pillbox, talk to your pharmacist. Keep it in a dry place at room temperature unless your provider or pharmacist tells you otherwise. Keep containers out of reach of children and pets.
If a caregiver prepares your dose for you, they should consider wearing gloves or pour the pills directly from their container into the cap, a small cup, or directly into your hand. They should avoid touching the pills. They should always wash their hands before and after giving you the medication. Pregnant or nursing people should not prepare the dose for you. Ask your provider where to return any unused medication for disposal. Do not flush down the toilet or throw in the trash.
Where Do I Get This Medication?
Some cancer medications are only available through specialty pharmacies. Your provider or pharmacist will start this process. Your insurance plan may also affect where you can get your medication. Call your prescription plan provider to find out which specialty pharmacies are in-network.
Insurance Information
This medication may be covered by your prescription plan. If you qualify, you may be able to get financial help through patient assistance programs (PAP). Co-pay cards may also be available to lower your out-of-pocket cost if you have commercial (not Medicare/Medicaid/Tricare) insurance. Your pharmacist, social worker, or navigator can help find resources for financial support.
Possible Side Effects
These are some of the most common or most serious side effects of this medication. Talk with your provider about the side effects you are having and how they can be managed.
Blood Clots, Stroke and Heart Attack
Ponatinib can increase the risk of blood clots, stroke, and heart attack. It can also cause blockages or clots in your blood vessels. If you have any of the symtpoms listed below, contact your healthcare provider right away or go to an emergency room.
Symptoms can include: swelling, redness, or pain in an extremity (arm or leg), chest pain or pressure, pain in your arm, back, neck or jaw, shortness of breath, numbness or weakness on one side of the body, trouble talking, confusion or mental status changes. Let your care team know if you have a history of previous blood clots, as you may need preventive medication.
Heart Problems
This medication can cause or worsen pre-existing heart problems, like congestive heart failure, restrictive cardiomyopathy, decreased heart function, and heart attack. Symptoms may be:
- Sudden weight gain.
- Swelling in your ankles or legs.
- Chest pain or pressure.
- Pain in your left arm, back, or jaw.
- Sweating.
- Shortness of breath.
- Clammy skin.
- Nausea.
- Dizziness or lightheadedness.
If you have any of these symptoms, call 911.
Liver Toxicity
This medication can cause liver toxicity, or liver problems, which your provider may monitor for with blood tests called liver function tests. Symptoms may be:
- Yellowing of your skin or eyes.
- Dark or brown urine.
- Pain in your abdomen (belly).
Tell your provider if you have any of these symptoms.
High Blood Pressure
This medication can cause high blood pressure (hypertension). You should have your blood pressure checked often during therapy, so that if you have high blood pressure, it can be treated. If your blood pressure cannot be controlled, your provider may want you to stop taking the medication. Tell your providers about any headaches, vision changes, or dizziness.
Low White Blood Cell Count (Leukopenia or Neutropenia)
White blood cells (WBC) help your body fight infection. While you are having treatment for cancer, your WBC count can drop, putting you at a higher risk of an infection. Tell your provider right away if you have a fever (temperature greater than 100.4°F or 38°C), sore throat or cold, shortness of breath, cough, burning with urination, or a sore that doesn't heal.
Tips for preventing infection:
- Hand washing: both yours and your visitors is the best way to prevent the spread of infection.
- Avoid large crowds and people who are sick (those who have a cold, fever, or cough, or live with someone with these symptoms).
- When working outside, wear clothes that protect you, like long pants and gloves.
- Do not handle pet waste.
- Keep all cuts and scratches clean.
- Shower or bathe daily.
- Brush your teeth at least twice a day.
- Do not cut cuticles or ingrown nails. You may wear nail polish, but not fake nails.
- Ask your providers before scheduling dental appointments or procedures.
- Ask your providers before you or someone you live with has any vaccines.
Low Red Blood Cell Count (Amemia)
Anemia is when your red blood cell count is lower than normal. Red blood cells carry oxygen to the tissues in your body. When your red cell count is low, you may feel tired or weak. Tell your providers if you have shortness of breath, trouble breathing, or pain in your chest. If your count gets too low, you may receive a blood transfusion.
Low Platelet Count (Thrombocytopenia)
Platelets are blood cells that help your blood clot. Thrombocytopenia is when your platelet count is lower than normal, and you are at a higher risk of bleeding. Tell your providers if you have any bruising or bleeding, including nose bleeds, bleeding gums, or blood in your urine or stool. If your count gets too low, you may receive platelets from a donor.
- Do not use a razor (an electric razor is fine).
- Do not do activities that can cause injury or bleeding.
- Talk to your provider before taking any non-steroidal, anti-inflammatory medications (NSAIDs) like Motrin/Advil (ibuprofen), Aleve (naproxen), Celebrex (celecoxib), and others. These can raise the risk of bleeding.
- Use a soft-bristle toothbrush to brush your teeth. Ask your provider about flossing or using toothpicks.
Rash and Dry Skin
Some patients may develop a rash, scaly skin, or red itchy bumps. Use an alcohol-free moisturizer on your skin and lips; avoid moisturizers with perfumes or scents. Your oncology care team can recommend a topical medication if you have itching. If your skin cracks or bleeds, be sure to keep the area clean to avoid infection. Tell your oncology care team about any rash you have, as this can be a reaction. They can give you more tips on caring for your skin.
Fatigue
Fatigue can cause exhaustion, feeling worn out and that your body is "heavy" and hard to move, or being unable to focus. It is common when you have cancer, and it is not the same as feeling tired. You may need to adjust your schedule to manage fatigue. Plan times to rest during the day and save your energy for more important activities. Exercise can help lessen fatigue. Talk to your providers about ways to deal with this side effect.
Constipation
Constipation is when you have less bowel movements than usual or are having trouble passing stool. To relieve constipation, you can include fiber in your diet (fruits like prunes, apples, peaches, and pear nectars/juices), drink 8 to 10 glasses of non-alcoholic fluids a day, and stay active. Taking a stool softener once or twice a day can prevent constipation. If you do not have a bowel movement for 2 to 3 days, call your provider.
Nausea and/or Vomiting
Talk to your providers if you have nausea and/or vomiting. They can prescribe medications to help you. Making changes to your diet can also help. Avoid things that make your symptoms worse, like heavy or greasy/fatty foods and spicy or acidic foods, like tomatoes, lemons, and oranges. Try saltines or ginger ale to help your symptoms.
Call your providers if you cannot keep fluids down for more than 12 hours or if you feel lightheaded or dizzy.
Peripheral Neuropathy
Peripheral neuropathy is when the nerves not in your brain or spinal cord are damaged. It causes numbness or a tingling feeling in the hands and/or feet, which can also cause pain and trouble with balance. The more you take this medication, the worse your neuropathy can get. The symptoms may slowly get better, or they may never fully go away. Tell your providers if you have symptoms of neuropathy, so that changes can be made to your treatment plan and to manage your symptoms.
High Blood Sugar
This medication can cause high blood sugar in patients with and without diabetes. Symptoms can be:
- Feeling more thirsty.
- More frequent urination.
- Feeling hungrier.
- Blurry vision.
- Headaches.
- Breath smelling like fruit.
All patients will have their blood sugar checked with blood tests. If you have diabetes and your blood sugars are higher than normal, talk to your provider. Tell your provider if you have any of these symptoms.
Muscle or Joint Pain/Aches and Headache
You may have joint or muscle pain/aches and headaches while taking this medication. Your provider can recommend medications and other ways to help relieve your pain.
Fertility
This medication may affect the reproductive system of women, resulting in the menstrual cycle becoming irregular or stopping permanently. Women may experience menopausal effects including hot flashes and vaginal dryness. In addition, the desire for sex may decrease during treatment. You may want to consider egg harvesting if you may wish to have a child in the future. Discuss these options with your provider.
Reproductive Concerns
There is a higher risk of health problems for your baby if you are pregnant, become pregnant, or get someone pregnant while on this medication. To lower the risk of birth defects, you should use birth control (contraception) to avoid pregnancy. Talk with your provider about what kind of birth control is safest for you and your partner.
If you can become pregnant, you will need to use effective birth control during treatment and for 3 weeks after the last dose of this medication, even if your menstrual cycle has stopped or changed. If you can get someone pregnant, you will need to use effective birth control during treatment and for 3 weeks after the last dose of this medication, even if you believe you are not producing sperm.
You should not breastfeed during treatment and for 6 days after the last dose of this medication.
Important but Less Common Side Effects
Other Heart Problems
This medication can cause slow or abnormal heartbeats or an abnormal heart rhythm called QT prolongation. Call your provider right away if you feel abnormal heartbeats or if you feel dizzy or faint.
Fluid Retention
Fluid retention happens when your body holds on to too much fluid or is unable to excrete (put out) fluid. You may have swelling throughout your body, bloating of your abdomen (belly) called ascites, and a hard time breathing as fluid builds up in the lining of your lungs (pleural effusion) or around your heart.
Call your provider right away if you have new or worsening swelling, unexpected weight gain, shortness of breath, or a dry cough.
Effects on the Pancreas
This medication can affect your pancreas. Your provider will monitor for this problem with blood tests. Let your provider know if you have a history of pancreatitis or excessive alcohol use, or if you have abdominal pain or nausea and vomiting.
Wound healing
This medication can cause slower or incomplete wound healing, such as a surgical wound not healing or staying closed. It is recommended that this medication be stopped 1 week before any surgery. Your provider will monitor wound healing before restarting this medication. If you have a surgical wound that has not healed or begins to have signs of infection (redness, swelling, warmth), report this to your provider.
Gastrointestinal (GI) Tear
This medication can cause gastrointestinal (GI) perforation, or a tear, in the wall of your intestines. Signs of this can be:
- New or worsening pain in the abdomen (belly).
- New abdominal swelling.
- Chills.
- Fever.
- Constipation.
- Nausea or vomiting.
If you have any of these symptoms, call your provider.
Tumor Lysis Syndrome
Tumor Lysis Syndrome (TLS) is a side effect that happens when tumor cells die too quickly, and their waste overwhelms the body. You may be given a medication (allopurinol) and IV fluids to help prevent this. TLS can affect your kidney function. Your provider will monitor your kidney function with blood work. Symptoms may be:
- Nausea.
- Vomiting.
- Diarrhea.
- Lethargy (feeling tired, drowsy, sluggish).
- Little or no urine output.
Tell your provider right away if you have any of these symptoms.
Effects on the Eyes
This medication can cause eye problems. Your provider may have your eyes examined before and/or during treatment. Be sure to report any symptoms of eye problems to your oncology provider, including blurred vision, changes in vision, dry eye, eye pain, yellowing of colors or seeing "floaters" or spots in your field of vision.
Posterior Reversible Encephalopathy Syndrome (PRES)
This medication can cause a neurological (brain) disorder called posterior reversible encephalopathy syndrome (PRES or reversible posterior leukoencephalopathy (RPLS). Symptoms of PRES/RPLS are:
- Headache.
- Seizure.
- Lethargy (feeling tired, drowsy, sluggish).
- Confusion.
- Blindness and other vision changes.
- Neurological problems.
Tell your provider about any of these symptoms right away.