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Patients & Caregivers

Once you’ve been diagnosed with leptomeningeal cancer, you’ll want to make treatment decisions as soon as possible. Try to find a care team with experience in leptomeningeal cancer. And if you want to get a second opinion, know what you need to bring to your appointment so you can keep the process moving. 

Read on to find out about clinical trials, types of supportive care and frequently asked questions.

Clinical Trials

Clinical trials are research studies that test how diseases can be detected, prevented or treated. They can also study quality of life by looking at how patients feel from a disease and how they feel from the treatment.

For leptomeningeal cancer, clinical trials test new and existing treatments. These treatments may be medications, surgery, radiation, or other methods. 

Scientists design trials to answer questions about:

  • Safe doses
  • Ways to deliver treatment
  • Side effects
  • Effectiveness 
  • Length of life

 

Clinical trials take place in phases:

  • Phase 1 trials test a treatment for safety and side effects in a small group of people. 
  • Phase 2 trials further study safety and determine how effective treatments are in a larger group of people.
  • Phase 3 trials compare the new treatment with standard or similar treatments to confirm its effectiveness and monitor side effects. The trials also collect other important information about the new treatment. These trials test treatments in a large group of people.

 

Items to note:

  • Many trials have a set number of people they can admit into a trial. 
  • Each trial has a list of inclusion and exclusion criteria. These are factors required for someone to be included or factors that prevent someone from being in the trial. This could be your physical condition, the status of your disease, or prior treatments.
  • Clinical trials may only be available in certain places. You may need to travel to be in a trial.
  • Most trials studying leptomeningeal cancer are Phase 1, some are Phase 2. There are no current Phase 3 trials.

Check out our quick snapshot of current clinical trials or for detailed information, visit clinicaltrials.gov and search for: Leptomeningeal

Centers of Excellence

Below are doctors involved in research and clinical trials on leptomeningeal cancer treatment. This list is current as of February 2025.

United States

California

Colorado

Florida

Illinois

New York

North Carolina

Texas

Utah

  • University of Utah Huntsman Cancer Institute (Salt Lake City, UT)

 

Worldwide Centers

Australia

  • Olivia Newton-John Cancer Research Institute (Victoria)

Austria

Brazil

Columbia

France

Germany

Italy

  • Università degli studi di Torino (Turin)

The Netherlands

  • The Netherlands Cancer Institute (Amsterdam)

South Korea

  • Samsung Medical Center (Seoul)

Switzerland

United Kingdom

  • Kings College London Comprehensive Cancer Center (London)

 

If you don’t live near a large cancer center, you may have concerns about traveling to get a second opinion or getting cancer treatment away from home. Speak with a social worker at your treatment center. They often have resources or suggestions to help with travel costs and lodging, including discounted rates at nearby hotels. 

There are also many community resources that may be able to help. Check out our Resources and Support page for more information.

Second Opinions

Since leptomeningeal cancer can progress quickly, it’s important to start treatment as soon as you can. Since there is no standard-of-care for treatment, some healthcare facilities will not be aware of or offer all possible treatments. Therefore, you may benefit by getting a second opinion from an expert who treats leptomeningeal cancer at a large cancer center. If you decide to seek a 2nd opinion, it’s important to start the process right away. 

Be open with your doctor about wanting to get a 2nd opinion. Your doctor may be able to speed up the referral, direct you to the best place for your needs, and send any appropriate medical records to the receiving team. 

Once you have chosen where to go for a 2nd opinion, call to set up a visit. Let them know you are looking to get in quickly. One or two second opinions are a good idea; more than this prevents you from getting started with therapy.

  • Find out what records they need from you and where to send them.
  • See if your current doctor can help you get your records over to the other facility.
  • You may need to call your current facility’s medical records department to get your records and imaging. It is best to make sure that the images from your scans are pushed electronically or you bring a CD with you to your visit. Reports from your scans are not sufficient for the doctor to give you a proper second opinion. 
  • Also, before you go, confirm your insurance coverage with your new doctor.

 

If you can, bring someone with you to your doctors’ visits. They can be there for support as well as to listen, take notes and ask questions. Several opinions can be overwhelming, but it is important to make a decision. With your doctor, set a “deadline” to make a decision on treatment strategy so that you can get started. 

Palliative and Hospice Care

Let’s be honest – the words palliative and hospice are not easy words to hear. Hearing the words palliative care and hospice care often bring up a lot of feelings – fear, anger, sadness, and anxiety. Yet, if you can remain open to learning about these options, you will be more prepared in the future.

  • Palliative care is care that is not directed at treating the disease itself. The goal of palliative care is to make a patient more comfortable, manage side effects, and improve mental wellness. The focus is on the patient’s goals for care, their values and what’s important to them. Palliative care occurs at the same time as tumor-directed therapy, and can include:
    • Symptom relief, including management of treatment side effects 
    • Supportive psychotherapy and counseling 
    • Advice on speaking to family and friends
    • Nutritional guidance  
    • Physical, occupational and cognitive therapy
    • Connection with support and community groups 
    • Spiritual support
    • Financial and legal support to connect you with available resources

Not every patient needs (or wants) all of the above palliative therapies. A palliative care team may include doctors, nurses, physical therapists, social workers, nutritionists and other types of healthcare providers. Care can be received at home, in an outpatient clinic or at a hospital. 

  • Hospice care can be started when treatment is no longer desired or effective and life expectancy is less than 6 months. The goal of hospice is to help reduce symptoms and provide comfort as a person transitions to their final days. Hospice care varies state by state. It’s best to check with hospice services in your areas to learn what type of care they provide.

Important note: If new treatment options become available, you can leave hospice and go into active cancer treatment any time that you want if you and your medical team feel that additional cancer treatment is appropriate.

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.