Treatment Tools

Deciding on a treatment for yourself or for someone you love can be completely overwhelming. Most likely your decision will be guided by your doctors, yet it’s very important to make a well informed decision and do your own research on types of treatments for brain tumors so you will know what questions to ask your doctor. Also, having a little knowledge on all treatments will help you feel more comfortable with your treatment plan.

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Introduction

Many variables are incorporated into the treatment plan such as type of tumor, recurrence of the tumor, success rate, the length of treatment and its effects on the patient, the side effects of treatment, and most importantly the patient and their families’ wishes and goals for the treatment of their tumor. The Braintmr listserve is a really good way to find out about treatments that others are considering or have tried, and it can be very supportive to discuss and receive feedback from others going through the same decision making process.

Clinical Trials

Maybe you are researching all the conventional treatments for brain tumors, like surgery, radiation, and chemotherapy and are still looking for more options. You might want to investigate Clinical Trials. A Clinical Trial is how the government monitors doctors and researchers who are searching for new medications and treatments for illnesses. Clinical trials for brain tumors are open to newly diagnosed patients as well as patients with recurring tumors. Please visit the American Brain Tumor Association’s “Primer” for additional information, as well as the links below. And please check with your doctors as well.

American Brain Tumor Association

American Brain Tumor Association's "A Primer to Brain Tumors" has a good overview of clinical trials.

ClinicalTrials.gov

A service of the National Institutes of Health (NIH) includes a thorough overview of clinical trials procedures, definitions and questions to consider. Also it provides a search for clinical trials across the U.S.

National Center for Complementary and Alternative Medicine

National Center for Complementary and Alternative Medicine: Clinical Trials using non-conventional treatments, as well as other info on complementary and alternative healing practices (see our page on Complementary Treatment Options). NCCAM currently lists one clinical trial for brain tumor patients: Efficacy of Distant Healing in Glioblastoma Treatment

Surgery

Surgery day is a difficult time for both the patient and caregiver. Lots of scary unanswered questions come up like “Is the tumor malignant?” “Will the doctors get it all out?” “Will my loved one need chemotherapy or radiation?” “Will they survive the surgery?” “Will they still be the same after surgery?”

In order to get these questions answered, it’s important to research all of your options thoroughly. Make sure you seek out information on the neurosurgeon and the hospital where the surgery will be performed. Do not settle for a doctor or hospital that has limited experience with brain tumors. Investigate the major brain tumor centers in the country to make sure you are getting the best possible care for your loved one. Take notes and keep records.

The day of surgery, be prepared with a pad of paper to write down what the doctor says because you might be so nervous and worried that you forget what everyone says. Also, bring along a support system for you, the caregiver. Sitting in a hospital waiting room for many hours waiting to hear how your loved one is can be exhausting and it really is important to have your friends and family near. Friends and family will make sure you eat something, will keep you company during a long operation, and will also help to keep your mind occupied with conversation that can relieve the tension of worrying and waiting.

Check our links for the web addresses for major brain surgery centers. Also, The Patient Advocate Foundation helps patients and caregivers know their rights with regard to patients and their insurance and employers.

Brain Tumor Foundation

This surgery overview explains the goals of neurosurgery, surgical methods and stereotactic procedures.

Brain Surgery Information Center

Useable, non-technical information about the conditions which require brain surgery.

AANS/CNS

Neurosurgery://On-Call offers Health Resources on a variety of neurological diseases, patient resources, and a general overview of neurosurgery. See their Information on Brain Tumors.

NYU Grossman School of Medicine

NYU Medical Center is one of the major brain tumor treatment centers in the country. Mike's surgeries were here and Dr. Patrick Kelly was his neurosurgeon.

Chemotherapy

Many different chemotherapy options are available for brain tumor patients that should be thoroughly discussed with your doctor. The chemotherapy agents may be either in pill or IV form. Chemotherapy in its basic definition attacks quickly dividing cells such as cancer cells. However, it also affects the body’s other quickly dividing cells like the hair, nails, stomach, intestine lining, and blood cells. It’s important to research and completely understand all of the side effects, which can include hair loss, vomiting, diarrhea, constipation, loss of appetite, night sweating, weakness, and fatigue.

Chemotherapy patients may also need to have their blood counts checked regularly to monitor white and red cells. Medications such as Neupogen and Epogen may be prescribed by your Doctor to lessen the symptoms of fatigue by increasing white and red blood cell counts. Also, chemotherapy patients must have their temperatures monitored and caregivers must be vigilant about preventing infection as chemotherapy can compromise the patients’ immune system.

One of the most difficult aspects of care giving for the chemotherapy patient is making sure your loved one is getting proper nutrition. As the chemotherapy drugs attack all fast growing cells, the patient may develop mouth sores and stomach and intestinal irritation that make eating regularly very difficult. Also, the patient may be very nauseas even at the sight or smell of food. Your doctor may prescribe anti-nausea medications to alleviate these symptoms. One of the best ways to ensure that your loved one is getting the nutrition essential for healing and strength is to juice fruits and vegetables with a juice extractor (but check with your doctor first as some chemotherapy regimens do not allow for raw juice or vegetables), or use a nutritional supplement such as Boost or Ensure, but check with your doctor first.

Below are a few links to give you more information on the various types of Chemotherapy used in the treatment of Brain Tumors.

Brain Tumor Foundation

A good overview and discussion of radiation treatment, including stereotactic irradiation and gamma knife radiosurgery.

MedlinePlus

A guide to more than 9,000 prescription and over-the-counter medications provided by the United States Pharmacopeia (USP). Find the common side effects, precautions while using the medicine, and what to know before taking it. Most chemotherapy drugs are listed.

Radiation

Radiation, like chemotherapy, involves risks and uncertainties. A concentrated dose of radiation is directed to a localized, calculated area of the brain in the vicinity of the resection. The radiation “burns off” the area around where the brain tumor was removed, to help prevent any further spread of the tumor. The best result is necrotic tissue (dead tissue), which sometimes can be misinterpreted on an MRI as “hot spots.”

Radiation can cause many different side effects such as nausea, hair loss, weight loss or gain, fatigue or headaches. Since radiation can cause swelling in the brain, the steroid drug dexamethasone is sometimes used to offset the side effects. However, dexamethasone has its own side effects as well. They are weight gain, increase of appetite, and immune system suppression from long term use. Dexamethasone can also give the “moon face” look and can also lead to dependence.

There are various types of radiation such as Stereotactic, Peacock, and Directed Beam. Your doctor will explain each of these treatments and help you decide the best approach. Normally radiation is used after a craniotomy to remove any leftover cells at the tumor site that were not removed during the surgery.

The following links may give you more information.

Brain Tumor Foundation

A good overview and discussion of radiation treatment, including stereotactic irradiation and gamma knife radiosurgery.

Elekta

This site from the makers of the Gamma Knife offers an easy to read overview on the radiation treatment process (or Radiotherapy) and an overview of Gamma Knife surgery, which involves a concentrated beam of radiation. At this site, click on the Patient navigation button at the left, then Treatment Process.

NYU Grossman School of Medicine

NYU Medical Center is one of the major brain tumor treatment centers in the country. Mike's surgeries were here and Dr. Patrick Kelly was his neurosurgeon.

Complementary and Alternative Medicine

A new Fact Sheet from the National Brain Tumor Foundation titled, “A General Overview of Complementary and Alternative Medicine Therapies” is now available by calling NBTF at 1.800.934.2873 or online at the “What’s New” section of www.braintumor.org

Here is a collection of links:

National Center for Complementary and Alternative Medicine

Clinical Trials using non-conventional treatments, as well as other info on complementary and alternative healing practices

Cautions:

St. John’s Wort, commonly used to treat depression, can interact with certain chemotherapy drugs and make them less effective. Check with your doctor about this!

See: Risk of Drug Interactions with St. John’s Wort, published in JAMA, by Jane E. Henney, MD

Dr. Andrew Weil

Dr. Andrew Weil, author of "8 Weeks to Optimum Health," is a proponent of "Integrative Medicine"-- a healing-oriented system that brings together the best medical and therapeutic practices from around the world to form a unified approach to health maintenance. The common thread among the varied therapies that form the basis of Integrative Medicine is the consistent focus on the body’s own innate mechanisms of healing. His website contains a variety of information such as a library of questions/answers, discussions about food as medicine, recipes, books, vitamins, and a natural medicine guide. Check out the cancer section or type "brain tumor" into the search box at the top to read his "answers".

Healing Touch

Healing Touch International - Healing Touch is an energy (biofield) therapy that encompasses a group of non-invasive techniques that utilize the hands to clear, energize, and balance the human and environmental energy fields. The Healing Touch educational program was developed by Janet Mentgen, RN, BSN, utilizing a nursing continuing education format. The American Holistic Nurses' Association and Healing Touch International endorse the Healing Touch educational program. You can locate a certified practitioner in your area.