Updated: Feb 15
Crizotinib, also known as Xalkori, is a targeted therapy medication prescribed to many patients with ROS1+ cancer. It can be a very effective treatment and relatively tolerable, as cancer treatments go. However, as with most medications, patients may experience side effects.
According to the Xalkori.com website:
“The most common side effects of Xalkori include: vision problems, nausea, diarrhea, vomiting, swelling of your hands, feet, face and eyes, constipation, increased liver function blood test results, tiredness, decreased appetite, upper respiratory infection, dizziness, feeling of numbness or tingling in the extremities.”
In addition to the common side effects listed on the Xalkori.com website, patients in the ROS1+ Cancer Facebook Group have reported other side effects, including: weight gain, low blood pressure, low heart rate, low testosterone, skin rash, low protein levels, low iron levels, taste changes and elevated creatinine levels.
(Note: Additional side effects may also exist. This list is not meant to be exhaustive. Please check the drug labeling and with your doctor for a complete list. Furthermore, some people have no side effects, while others have a lot. Patient experiences vary. In general, many patients in the ROS1+ Cancer FB Group noticed that side effects like nausea and visual disturbances occurred most strongly in the first few months on the drug, and then waned as their body adjusted. Some patients lucky enough to be on the drug for several years have noticed certain side effects, like edema, increase as the cumulative effect builds up.)
Below are some of the ways ROS1+ patients have reported addressing these side effects. This list is not intended as medical advice. Some of these things have worked for some patients and not others. Medical treatment is highly individual. As always, please consult with your medical team before making any treatment related decisions.
SIDE EFFECT → EXAMPLES OF PATIENT STRATEGIES TO ADDRESS SIDE EFFECT
Nausea → Take the medication 30 minutes after food. Some patients find eating something starchy is best, others find it necessary to have protein. Drink plenty of water and stay upright for the subsequent 60 minutes. If the nausea persists, a doctor may prescribe anti-nausea medication.
Diarrhea → Keep some Immodium nearby!
Constipation → Take stool softeners daily, increase water and fiber consumption.
Edema → Reduce salt intake, increase protein intake, keep feet elevated as much as possible, wear compression socks or hose, increase physical activity.
Burning esophagus, sometimes experienced as reflux → If the Xalkori medication gets stuck in the esophagus, it can cause an extreme and painful burning sensation. Several patients in the ROS1+ Cancer FB Group have reported having to go to the hospital to treat this pain. To avoid this, stay upright (do not lie down) for at least an hour after taking the pill. Also, take the pill with some food, swallow it with a generous amount of liquid, and perhaps also eat a little something after swallowing the pill, just to ensure it has gone all the way down.
Indigestion or stomach problems → Take the medication with some food.
Fatigue or tiredness → Get more sleep/rest per day; one patient who found the fatigue really disruptive to her life found relief with a scrip for ADHD medication.
Slower heart rate → Scale back on vigorous activity.
Visual disturbances → This is often more pronounced at night, when going from darkness into light (e.g. going from a dark bedroom and then flipping on the light switch in another room). Many patients report that this side effect lessened considerably after the first month or two on the drug. One patient who continued to struggle with visual disturbances got relief after their doctor lowered their dose* from 250 to 200 mg.
Skin rash → Calamine lotion applied twice daily.
High liver values → Doctor had patient paused Xalkori for 1-2 weeks and then resume at a reduced dose.* Reduce or eliminate alcohol consumption to reduce strain on liver. Some patients whose liver values refused to come down, had to find alternative treatments, such as joining clinical trials for Lorlatinib or Entrectinib.
Low protein levels → Increase dietary protein intake (especially with something like protein powder in a smoothie where it is possible to get a lot of grams of protein easily).
Low iron levels → Add an iron supplement; if necessary the doctor may prescribe an iron infusion.
Weight gain → Get bigger clothes! (Sigh – if only we had the magic cure for this, we’d be rich!)
Taste changes → Eating bland foods helped make it less noticeable and it eventually got better after a few months.
Low testosterone (for men) → Low testosterone in men can affect mood, energy and sleep. It is possible to get a prescription for a testosterone replacement medication like Androgel to counteract this.
Hormone or Menstrual Cycle changes (for women) → Some female patients have experienced irregularities with their menstrual cycles while on Xalkori. It is unclear if this is a causation or correlation situation, nor does there appear to be any obvious solution. One patient consulted with a gynecologist and was prescribed progesterone to help regulate things a little better.
Elevated creatinine levels → This reflects a strain on the kidneys and can make getting CT scans challenging (because the contrast dye is also difficult on the kidneys). Extra hydration may help with this.
Dizziness → lie down for a bit.
*It is very important to consult with your doctor before lowering (or otherwise adjusting) the dosage of Xalkori.