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Practical Tips for Patients Preparing To Take Cabozantinib

Updated: Apr 13

We thank Jaydira Del Rivero, MD, for reviewing this blog post.


In March 2025, the U.S. FDA approved a new treatment option for neuroendocrine tumors: cabozantinib. (Cabometyx® is the brand name of this medication, manufactured by Exelixis.) Although this pill has long been used to treat other cancers, it is now approved for patients 12 years and older with previously treated, advanced neuroendocrine tumors.


👉 For background on the CABINET trial and what the trial data showed, read our March 26, 2025 blogpost: Positive Results of the CABINET Trial Show Cabozantinib as a New, Effective Treatment in Advanced Neuroendocrine Tumors and watch our Nov 2025 Interview with Dr. Aman Chauhan Update on Cabozantinib.


Cabozantinib is an oral, non-chemotherapy pill from the category of medications called a VEGF tyrosine kinase inhibitor (or TKI). It's a targeted therapy that works to inhibit the growth of blood vessels in the tumors and also can work to slow growth. 

As more patients begin taking cabozantinib, it has become one of the most frequently discussed topics in our weekly support groups. Many people want to know what to expect, how to take the medication correctly, how it may affect daily life, and what practical steps can help them feel more prepared.


Below are tips and tricks gathered from firsthand patient and caregiver experience, including NET caregiver Lisa Yen’s “show and tell,” which offers practical tools she and her husband found helpful when preparing for Cabozantinib.


Important: Always consult your healthcare team with any questions or concerns about your care. This information is provided solely for educational purposes to support and inform patients and caregivers. It is not intended to substitute for professional medical advice, clinical judgment, diagnosis, or treatment, nor should it replace direct discussions with your healthcare providers.





Key Resources and Helpful Items



The Cabometyx Patient Care Kit is available directly from the manufacturer, Exelixis and includes:

  • Samples to help manage common side effects

  • Educational materials on cabozantinib

  • A treatment journal to track symptoms, blood pressure readings, and communication with your care team

  • A patient handbook with tips and guidance


Many patients find this kit reassuring and helpful to have on hand.



Pharmacists, especially oncology pharmacists, play a key role in helping patients navigate targeted oral therapies. This episode discusses:

  • How to take cabozantinib safely

  • What to avoid

  • Common drug interactions

  • Ways to manage side effects

  • How pharmacists can support you throughout treatment




Cabozantinib can cause hand foot syndrome, a side effect that may lead to redness, sensitivity, or discomfort in the hands and feet. Patients often find that the over-the-counter Udderly Smooth cream:

  • Helps moisturize dry or irritated skin

  • Is non-greasy

  • Works well when applied at bedtime


  1. Blood Pressure Cuff


Cabozantinib can increase blood pressure, so monitoring at home is essential. 

Tips:

  • Check your blood pressure at the same time each day, preferably in the morning

  • Record each reading so your care team can identify trends

  • Know the parameters for when to call your doctor. 

  • Your doctor may prescribe medications to manage your blood pressure. Ask your doctor who you should be reporting your blood pressure readings to and who will be the one to prescribe and manage high blood pressure.


5. Helpful Items for Nausea or Altered Taste


Some people taking cabozantinib experience nausea or altered taste. The following tips and tools may help manage these symptoms:

  • Lemon or lime 


Some people find adding a few drops of lemon or lime to their water helps with altered taste or nausea. 


Some patients find that inhaling soothing herbal scents can help ease nausea.

  • Lozenges



  • Nonmetal utensils

    Using bamboo or other non-metal utensils may help reduce metallic taste during meals, if this is one of your symptoms.

  • Biotène® oral rinse

    Some patients experience dry mouth, mouth sores, or changes in taste. An alcohol-free over-the-counter rinse like Biotène can soothe mouth dryness, reduce discomfort, and make eating easier when used before meals.


If nausea persists, ask your doctor about prescription anti-nausea medications. Your care team can help determine what is appropriate for you.


The following guidance is adapted from patient education materials provided by the manufacturer of cabozantinib (Exelixis, maker of the FDA-approved drug Cabometyx®). For more information, visit: https://www.cabometyx.com/resources

Always discuss any questions or concerns with your healthcare team before making changes or trying new strategies.



How to Take Cabozantinib


  • Swallow tablets whole. Do not crush, chew, or dissolve them

  • Take on an empty stomach: one hour before eating or two hours after eating

  • Take it at the same time each day. Any time of day is fine as long as it is consistent

  • If you miss a dose and more than 12 hours have passed, skip it and take the next scheduled dose


Food and Drug Interactions


  • While taking cabozantinib, do not eat or drink grapefruit, grapefruit juice, or grapefruit-containing products because they can affect how the medication is absorbed.

  • Inform your health care provider of all medications you take, including prescription medications, over-the-counter products, vitamins, and herbal supplements. This helps your care team identify any possible interactions and keep you safe during treatment.


Monitoring Symptoms


Track symptoms such as:

  • Mouth sores

  • Changes in taste

  • Dry mouth

  • Hoarseness or voice changes

  • Skin and hair changes, such as changes in color, dry skin, rash

  • Fatigue

  • Digestive issues such as nausea or diarrhea


Daily tracking helps your provider decide whether dose adjustments, side effect management strategies, or treatment breaks are needed.


Communication Is Key


Frequent communication with your healthcare team, supported by your journal or tracking system, helps ensure the treatment is safe, tolerable, and effective.


Final Thoughts


Starting a new medication can bring uncertainty, especially when it affects daily routines. These tips and tools have helped many people feel more prepared and empowered as they begin Cabozantinib.



For more information and resources, explore our video library and podcasts.

You are not alone. We are here to support you.

 
 
 

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NEUROENDOCRINE CANCER FOUNDATION
 
Mailing Address:
PO BOX 370466
DENVER, CO 80237

info@ncf.net
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© 2025 by Neuroendocrine Cancer Foundation

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