Imatinib (brand name GLEEVEC) is FDA and EMA-approved for the treatment of a form of leukemia in 2003. Imatinib works by targeting a protein in the same family as CSF1. Because the proteins targeted by imatinib are functionally similar to the protein that drives TGCT growth, imatinib works to shrink or stabilize TGCT in a subset of patients.
According to a study that evaluated patients with advanced or recurrent diffuse TGCT, one third of patients treated with daily imatinib for 52 months had significant shrinkage of their TGCT, 27% had partial shrinkage, and 4% of patients had shrinkage so significant that they had unmeasurable disease (1). Sixty-five percent of patients on imatinib had stable disease with no progression at 52 weeks. Symptoms improved in 78% of TGCT patients, even those with stable disease.
Common side effects included:
fatigue (50%)
fluid retention (48%)
nausea (34%)
skin rash/itchy (12%)
Other side effects included abdominal cramps, headache, diarrhea or constipation, weight changes, and appetite changes. Due to side effects, patients electing into surgery, switching to other medical treatments, physicians decision, and other reasons, 66% of patients discontinued imatinib.
Patient-curated tips and tricks
Disclaimer: For medical advice and side effect management, always consult your medical oncologist or healthcare team. These tips were curated by patients to share what’s been personally helpful. Imatinib affects everyone differently. Some patients experience shrinkage, while others disease stability. Discuss with your care team what’s reasonable for your unique situation.
1. Eat Before Taking Imatinib
Many patients find that taking Imatinib with food helps reduce nausea.
Try a small snack such as a granola bar, a piece of bread, or simple carbohydrates before dosing.
Consider Taking It at Night
Switching your dose from morning to evening may help reduce fatigue and gastrointestinal (GI) side effects.
Ask your doctor if a nighttime schedule is suitable for you.
Manage Nausea Naturally or Medically
If nausea persists, discuss prescription anti-nausea medications with your care team.
Some patients find relief using mint tea, mint gum, or mint candies.
Know the Typical Timeline of Side Effects
Side effects often appear around 3 weeks into treatment and may peak by 3 months.
Many patients report improvement over time.
Let your doctor know how you’re tolerating Imatinib. Dose adjustments may help.
Stay Hydrated
Drinking plenty of fluids can help reduce facial or body swelling.
Aim for at least 64 ounces (about 2 liters) a day, or roughly half your body weight in ounces.
Be Cautious with Acetaminophen (Paracetamol)
Always check with your pharmacist or healthcare team before using acetaminophen/paracetamol.
Some patients are advised to use lower doses or avoid entirely while on Imatinib.
Rashes and Facial Swelling May Occur
Patients may have rash or swelling around their face or body. For the rash, patients sometimes use ointments and creams such as oatmeal moisturizers and over-the-counter cortisone creams.
For the facial swelling, some patients report success with cold compresses. Let your doctor know and they can recommend side effect management.
Keep a Side Effect Journal
Patients find it helpful to keep a written journal of side effects and whether there are any triggers. This can be used as a discussion guide with your doctor during visits.
References 1. Vespoor F.G.M, Mastboom M.J.L, et al. 2019. Long-term efficacy of imatinib mesylate in patients with advanced Tenosynovial Giant Cell Tumor. Scientific Reports. doi: 10.1038/s41598-019-51211-y
