Questions When Considering Medication for TGCTs

A guide to making treatment decisions about medications that treat tenosynovial giant cell tumors.

A healthcare provider examines a patient's wrist.

Tenosynovial giant cell tumors (TGCTs) are a rare type of benign tumor that grow in the synovium bursae, tendon sheath, and other tissues that make up the joints. TGCTs can be painful and can interfere with the normal functioning of the joints.

The most commonly used treatment for TGCTs is surgery to remove the tumors, but other treatment approaches are sometimes required. Radiation therapy to shrink the tumors is sometimes used in combination with surgery. There is also a medication approved for the treatment of TGCTs when surgery is not an option. In some cases, other medications may be prescribed off-label or as part of a clinical trial investigating new treatments for TGCTs.

The medication that is approved for the treatment of TGCTs, as well as the medications that have been investigated, belong to a category of drugs called targeted therapies. Targeted therapies act on specific molecular processes in the body to disrupt the abnormal growth of cells that cause TCGTs.

If you are considering taking a medication to treat TGCTs, the following questions may be helpful when talking to your healthcare provider and making treatment decisions:

  • What is the name of the medication?
  • How does the medication work to treat TGCTs?
  • How is the medication taken?
  • How long will I be on this medication?
  • What do I do if I miss a dose?
  • What do I do if I take an extra dose?
  • Will any other treatments be used along with this treatment?
  • How will I know if the treatment is working?
  • How much does the medication cost?
  • Do I need any vaccinations before starting this medication?
  • What are the potential side effects and risks of taking the medication?
  • How will this medication impact my normal activities and day-to-day life?
  • What do I do if I experience a side effect? Who should I call?
  • How will I be monitored for side effects?
  • What if I have to stop taking the medication?
  • Is there anything I need to avoid while taking this medication?
  • Can the medication interact with foods or other medications, such as over-the-counter drugs like cold medicines or pain-relieving medicines?
  • How should I store the medication?
  • Are there any risks associated with touching or handling the medication?
  • Are there any brochures or leaflets about the medication that I can take with me? Where can I read more about this medication?

In addition to a list of questions, also make a list of all other medications you take, including medications for other health conditions as well as vitamins and herbal supplements. Also be prepared to talk about other health conditions you have and your medical history, including previous surgeries.

There is no best treatment for TGCTs, only the treatment that is best for a particular person at a particular time. As a patient living with a rare condition like TGCT, it’s important to advocate for yourself as a patient. Work with healthcare providers you feel confident in, ask questions, and learn as much as you can about the condition and the treatment options.

Article sources open article sources

Paul O'Donnell. "Soft Tissue Tumors." Grainger & Allison's Diagnostic Radiology. Seventh Edition, 2021.
National Organization for Rare Disorders. "Tenosynovial Giant Cell Tumor."
Gold Standard Drug Database. "Drug Monograph: Pexidartinib."
Mehdi Brahmi, Philippe Cassier, et al. "Long term term follow-up of tyrosine kinase inhibitors treatments in inoperable or relapsing diffuse type tenosynovial giant cell tumors (dTGCT)." PLoS One, 2020. Vol. 15, No. 5.
Shanada Monestime & Dovena Lazaridis. "Pexidartinib: The First FDA-Indicated Systemic Treatment for Tenosynovial Giant Cell Tumor." Drugs in R&D, 2020.
Floortje G. M. Verspoor and Gerjon Hannink. "Systemic treatment of tenosynovial giant cell tumours in context." The Lancer, 2019. Vol. 394, No. 10197.
William D. Tap. "Multidisciplinary care in tenosynovial giant cell tumours." The Lancet Oncology, 2019. Vol 20, No. 6.
Canadian Cancer Society. "Questions to ask about targeted therapy."
American Cancer Society. "Getting Targeted Cancer Therapy."

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