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Frequently Asked Questions (FAQs)

What questions should I ask at my doctor’s visit?

Below are some of the questions you may wish to ask. Before you go, know what you are prepared to hear. Share with your doctor any concerns or ways in which you need or want to hear the information.

  • Do I need extra tests to confirm or rule out leptomeningeal cancer?
  • Does my cancer type have any mutations? Will extra testing be done to look for new mutations?
  • What can the status of mutations mean for my treatment plan or qualification for clinical trials?
  • What should I expect in terms of symptoms if my cancer progresses?
  • What symptoms should I contact the doctor about?
  • What symptoms can wait until our next appointment?
  • What are my treatment options?
  • Are there any intrathecal treatments for my type of cancer?
  • Is radiation therapy an option?
  • What risks or side effects should I expect with these treatments?
  • Are there any clinical trials that may work for me?
  • Have you treated leptomeningeal cancer in patients with my type of cancer?

What should I know about eating and drinking?

Doctors can prescribe medicine to increase your appetite. This may include anti-nausea medicine like Zofran® (ondansetron), Kytril (granisetron), appetite-stimulating medicine such as Megestrol (megace), or steroids such as dexamethasone or prednisone. THC, a substance found in marijuana, can trick your brain into thinking you’re hungry and help increase appetite. Speak to your doctor about what makes sense for you before trying any of these options. 

  • Find foods that work for your appetite.
  • Leptomeningeal cancer, radiation, and chemotherapy can all change the way that food tastes.
  • Your favorite foods may have changed so be open to trying new options.
  • Eat foods that are high in calories and nutrients.
  • Try eating smaller meals or snacks throughout the day.
  • Limit drinks during your meals so you don’t fill up on liquids.
  • Increase the amount of protein in your diet.
  • Some people find shakes or smoothies work for them. Try adding protein powder, greens such as spinach or kale, and fats such as milk, cream, nut butter or avocado.
  • If you have trouble chewing or swallowing, or find that you cough after drinking water, talk to your doctor.

Some patients have a dry mouth, and this can make eating difficult:

  • Stay hydrated by drinking more water and avoid sodas and sugary drinks, caffeine and alcohol.
  • Avoid salt and salty foods.
  • Try sugar-free chewing gum and lozenges with xylitol.
  • Use dry mouth sprays, lozenges, or gels.
  • Rinse with mouth washes made for dry mouth and avoid mouthwash that has alcohol.
  • Use a humidifier at home to keep the air moist and your mouth from drying out more

Is Leptomeningeal cancer painful? What can be done?

Not all patients have pain from leptomeningeal cancer. But if you do have pain, talk to your doctor. You do NOT need to live with pain. There are many treatments available.

  • Headache pain can be due to abnormal CSF flow or pressure on certain nerves. A shunt may be helpful, and some patients find that steroid treatments are helpful.
  • Back and neck pain with movements such as sitting or bending can be due to irritation of the meninges. Steroid treatments can be helpful for this.
  • Pain in one area traveling down an arm or leg or wrapping around the body can be due to pressure on an individual nerve or nerve root. This can be treated with local steroid injection, oral (by mouth) steroids, or other treatments.
  • All types of pain may benefit from other treatments, including anticonvulsants, (used to treat seizures), antidepressants, and topical (on the skin) gels and lidocaine patches.
  • Some patients find that acupuncture and/or physical therapy can provide relief from pain.

Can symptoms get better and then worse over time?

Yes. Symptoms can be on and off and be better at times, worse at other times. This could be a result of treatment or changes in where the cancer cells are located. Increasing symptoms or new symptoms can develop as the disease progresses.

What is the life expectancy for people with leptomeningeal cancer?

How long you live after you find out you have leptomeningeal cancer depends on many, many factors. Talk with your doctor about your case.