Not everyone experiences the same side effects, but this information addresses many of the most common problems. You can keep notes about how you feel and work closely with your care team to find the best ways to feel better.
Things to Remember
- Your symptoms are linked to the location of the tumor in your brain and/or side effects from your treatments.
- There are ways to relieve symptoms and side effects, such as massage and pain management medication, but these options are not perfect and may require time and patience.
- Talk to your medical team about palliative care, what options might be available to you, and ask for a palliative care consultation.
- Rehabilitation specialists (physical, speech, and occupational therapists) can be a huge help. Try to find a team that is experienced in working with brain tumor patients.
- Keep track of how you feel (or ask someone to keep notes for you.) Aim to bring your notes to appointments to help you remember what you’d like to discuss. If you prefer to use your phone to keep track of your symptoms, download the MY STORI app developed for brain tumor patients and caregivers by the NCI’s Center for Cancer Research, Neuro-Oncology Branch.
- Try to be patient with yourself and with others as you strive for a higher quality of life.
- Licensed social workers and support groups can help as you cope with depression, anxiety, or other changes in your life.
- Brain Tumor Support Conversations is an open, nationwide, free platform for virtual, peer-to-peer support and community engagement. The program is facilitated by Adam Hayden, a brain tumor patient, and Lisa O’Leary, a volunteer former caregiver. The monthly discussion brings together people with direct brain tumor experience to share perspectives, support, and insights and is a welcoming space where patients and loved ones can talk about the feelings and emotions that accompany any aspect of the brain tumor experience.
- Meditation Mondays is a free virtual meditation class held monthly and led by Tori Best — a meditation, mindfulness, and yoga teacher — to help brain tumor patients, caregivers, or family members manage stress and anxiety, improve mood and quality of life, enhance focus, and find peace in their daily lives.
- Complementary or alternative medical techniques, such as diet changes, exercise, or relaxation techniques, may also help you feel better.
How To Help When Someone Is Having a Seizure
Seizures are a sudden attack or convulsion caused by abnormal burst of electricity in the brain. Signs can range from muscle contractions, to staring, to loss of consciousness.
- Stay with them and allow the seizure to pass (a few seconds or a few minutes)
- Loosen any tight clothing if possible and make sure they are breathing
- Try to cushion harmful objects to prevent injury while convulsing
- DO NOT put anything in their mouth
- Call for emergency help if the seizure lasts longer than five minutes, if a second seizure immediately follows, or if they are injured or not breathing
