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Microsoft word - patient_guide 2.5.docBrain Tumor Guide for the Newly Diagnosed
Copyright 2005 Musella Foundation
Table of Contents
Introduction: Where, When, How …Why Me?
From Day One; A Place for Everything
• Tools to help you get organized • Second “Expert” Opinions • The Role of Care Givers and Loved Ones • Support Groups • The Virtual Trial • Mind, Body & Soul; Faith in Healing
Frequently Asked Questions
• Types of brain tumors • What’s in a “grade”? • Surgery & Survival • Your Medical Team
Sex & Fertility
• Effects of Treatment and Medication • Birth Control • Sex, Surgery and Radiation/Chemo Therapy Insurance Management – Know Thy Policy!
Appendix I: Online Support Groups
Appendix II: Overview of the virtualtrials.com website
Where, When, How…Why Me?
Whether or not it was a loss of physical balance that led you to be diagnosed with a brain
tumor, surely a loss of emotional balance quickly followed
Every day, an estimated fifty adults will be diagnosed with a primary brain tumor
(starting in the brain), and many more will be diagnosed with a cancer that has spread to
the brain from someplace else in the body, such as the lung or breast. Additionally,
thousands of parents annually will hear these devastating two words – brain tumor – in
regards to their child.
There is no known cause of tumors starting in the brain and for many no known "cure."
However, there are certainly ways of extending your life and improving the quality of
Unlike the tumor itself, these ways are within your control, but they require you, or
someone who loves you, to advocate for the highest quality of care available to you. In
many cases, this can mean un-learning some of society’s commonly accepted notions
towards medical care you’re about to receive. Among other things, you must learn to
question what you’re told initially and, as treatment plans are put into place, to ask what
qualifying factors your diagnosis and treatment plan is based upon. You must also seek
out the foremost expert advice within your geographical reach.
No longer limited by your physical location due to the proliferation of diagnosis and
treatment avenues accessible (and available) through the Internet, the outcome of your
treatment depends on your ability to advocate for your right to research and explore
advanced therapies and the expectation that your medical care team will do the same.
Sadly, the latter will not always be the case and you must be prepared and knowledgeable
enough to know when to insist upon a second (or third) opinion and alternative therapies,
as your life, or the life of a loved one may depend upon it.
Typically your physician will have a plan to discuss with you following your initial
diagnosis. This plan may include a referral to a neuro-oncologist or neurosurgeon for
consultation regarding treatment options, such as surgery, radiation, chemotherapy or a
combination of the same. While in some cases circumstances are such that emergency
surgery is the only immediate option due to brain swelling or risk of acute brain injury,
typically there is ample time to seek a second opinion and gather more information –
including a biopsy – that can assist in your diagnosis confirmation. This confirmation,
including a second opinion of your MRI and/or CT, and tissue sample (for which
methods are explored further in this guide) is critical to your treatment discussion. In
some studies as many as twenty-five percent of second opinions resulted in a change of
diagnosis in either tumor type or grade and, thus, a change in necessary treatment. An
MRI alone can be inconclusive (it may not be a tumor at all), making a thorough
examination of your symptoms, and when possible, a biopsy vital to your diagnosis.
The single-most important factor in your care will be receiving a second opinion and, if
possible, your treatment from an expert source, preferably a major brain tumor center that
is familiar with advanced forms of diagnosis and treatment of brain tumors. Also, ask
whether your biopsy was reviewed by a neuropathologist who sees a lot of brain tumors.
Most pathologists do not see enough brain tumors to make the subtle distinctions that
may be necessary
Your primary physician or oncology (cancer) specialist may not be familiar with the
advances being made in the treatment of brain tumors, as is often the case. If your
medical care team can not answer your most pressing questions or are unwilling to
consult on your behalf with available brain tumor experts, you must seek out further
information and reliable sources for care, such as those found within major brain tumor
centers. Many of these specialized centers will allow you to submit your MRI and CT
scans, as well as biopsy specimens, for further examination directly without a referring
Unlike general neurosurgeons, the expert neurosurgeons and team members found at
these centers perform over fifty brain surgeries annually (some as many as five or more
per week) and offer the most technologically advanced procedures with higher rates of
survival. Your surgeon-expert and treatment team can profoundly affect the outcome of
your care. Included in this guide are links to the major tumor centers nationally, as well
as the expert physicians available to assist you locally.
If knowing your enemy (type and grade of tumor) is indeed, half the battle, then having
the tools to employ a strategy – a strategy for life – is equally important. Brain tumors
can change, grow and reoccur, so it is important to be organized and knowledgeable
about your tumor’s makeup and location, and your medications and their side effects,
symptoms you might expect throughout your treatment and to maintain an ongoing, open
dialogue with your medical care team. Physicians rarely engage one another in the type
of dialogue patients often assume is transpiring on their behalf. Being organized can
assist you by ensuring all of your team members are up-to-date with current information
at the time of your appointments and consultations. You must become your own primary
This guide is made available to help you understand some of the common decisions
you’ll be facing, answer some of the questions frequently asked by patients and care
givers, and to help you get organized so that you can best advocate for the quality of care
you both need and deserve. Wherever possible, links to further information have been
provided for your convenience.
From Day One; A Place for Everything
The diagnosis of a brain tumor can leave patients and their loved ones in a mental fog; a
fog so thick with questions that where to begin, in and of itself, can be debilitating. There
are, however, ways in which you can regain control, stepping out from the fog and into
the light of day.
Organization is your key to obtaining the information you’ll need and the proper
treatment necessary for your specific type of tumor. The following is a list of tools
that have helped other brain tumor patients.
A three-ring binder can become your best friend and treatment partner, easily
safeguarding all the necessary information about your tumor-type and treatment plan at
your fingertips. Referrals to specialists or for a second (or third) opinion are often
delayed by the need to obtain records and, sometimes, by records that have been lost
along the way. Maintaining your own copies of the following will ensure your consulting
physicians have access to all of your important documents at the time of your
appointment. Many people maintain these records on their computer and occasionally
print them out and store them in the binder as needed – since it is easier to carry a binder
around! Also print out a copy of your current medications and allergies to store in your
wallet or pocketbook in case of emergency! Items to include in your treatment binder
• Medical History – Start with a copy of the first medical history form you are
asked to fill out. This will list past medical problems, such as diabetes or heart problems which may impact the treatment choice, as well as any allergies you have. An important allergy to note is to iodine or shellfish – as the dyes (contrast agents) used in some brain scans contain iodine. This will be helpful when you have to keep filling out similar forms. Keep it updated as things change. You can also ask your doctor for a copy of the history and physical they perform on you. • Copies of MRI Films and Reports – Most radiological centers today can provide
you with a copy of your MRI or CT (CAT Scan) on a CD that can be viewed on any computer. When you check in at the MRI / Radiology facility, it’s very important to request a copy of the film or a CD along with the written report of the radiologist’s findings. Most office supply stores carry special three-hole vinyl pages that hold multiple CDs safely within a binder.
• All Routine Lab and Pathology (biopsy) Reports – different members of your
medical team will benefit from recent lab results that may have been initially ordered by another physician. Having your personal copies of these items available for review on demand will save time, increase your understanding, and in some cases, eliminate the need for unnecessary blood work. • Medication At-A-Glance -- It’s important to disclose all the medications you
take to your physician and care team members. Keeping an up-to-date medication record in your treatment binder (including herbal supplements and over-the-counter items) can provide a quick and clear snapshot of your daily meds at-a-glance – reducing the chance of error when more than one physician is involved with your care. You may experience symptoms that are medication related; side effects to a
medication that one member of your medical team may not realize you’re taking
and thus may be incorrectly diagnosed or treated.
Take your treatment binder to every appointment with every physician-specialist
and request that they review this list before prescribing any new medication. You
should also request a copy of the drug formulary – a list of covered medications –
from your insurance company and keep it in your treatment binder. It may be
necessary for your physician to request prior authorization for some medications
and knowing this in advance can save you time and expense.
• Location, Location, Location – Knowing the exact location of your tumor will
assist you in many ways. By researching the functions of that part of the brain, you can more clearly understand (and be prepared for) many of the symptoms you are experiencing, or might expect to experience. Ask your physician to be specific about the location, perhaps even provide you with a diagram of the brain with a penciled-in tumor site. To understand your tumor, and thus certain therapies available to you, you must understand your tumor’s location. Ask what symptoms to expect if the tumor expands The brain is divided into six primary regions, each controlling specific functions.
The following is a brief overview of each region and their correlating functions:
Brain Stem: Where the brain connects to the spinal cord is called the brainstem
and is considered the pathway to the face, also controlling vital heart and lung
functions such as breathing, digestion, heart rate and blood pressure, as well as
being awake and alert. It is the pathway for all nerve function through the spinal
cord to the highest part of the brain. Problems in the brainstem often cause things
like double vision, problems with facial muscles, nausea, sleepiness, or weakness
on one side of the body. However, because so many nerves go through the
brainstem, problems here can cause almost anything
Cerebellum: Located at the back of the brain above the brain stem, the
cerebellum coordinates balance, posture, and coordination, and affects activities
such as eating, walking, talking, and moving your eyes.
Frontal Lobe: As the name suggests, the front part of the brain is responsible for
organizing thoughts, planning, problem solving and selective attention. The
frontal lobe is also the “personality center” of behavior and emotions, judgment
and sexual urges. The posterior (back side) of the frontal lobe also houses nerve
cells that produce movement.
Occipital Lobe: Located in the mid-back of brain, the occipital lobe is in charge
of vision. It takes input from your eyes and turns it into the pictures that you see.
Problems in this lobe can cause partial blindness or the inability to recognize
things like shapes, colors, or faces
Parietal Lobe: Located behind the frontal lobe at the top of the brain, the parietal
lobe is comprised of a right and left lobe, which together, control our sense of
touch, feel and understanding of weight, size and texture, as well as
comprehension. Problems in the parietal lobe can cause numbness, tingling, or
other problems with sensation. Problems with the right parietal lobe can cause
difficulty with figuring out where you are or how to get from one place to another
as well as difficulty recognizing your arm when you see it. Problems with the left
parietal lobe can cause difficulty speaking or difficulty understanding what other
people are saying.
Temporal Lobes (2): Located on the right and left side of the brain (near ear
level), the two temporal lobes help us to distinguish smells and sounds,
experience fear and may impact short-term memory. The right lobe is primarily
responsible for visual memory while the left controls verbal memory.
A good overview of the brain and its functions can be found at:
• A Personal Diary – Keeping a diary is very important as you travel through
various treatments options with specialists, beginning on day one! Recording your specific questions and concerns will help ensure that the answers you and your loved ones or caregivers need are addressed by your medical team. You may want to create a separate section for each team member, writing down which doctor is responsible for the various aspects of your care; medication refills, routine lab work, referrals, as well as, what was discussed at appointments. Questions often arise after leaving an appointment and referencing these pages later may be helpful. It’s also recommended that you maintain monthly calendar pages to record the start of new medications or therapies, and any bad reactions to them. The starting times of symptoms and side effects may be difficult to recall at a later date, but are important to distinguish their origin. • Legal papers – HIPAA: . Every doctor you see will ask you to sign a privacy
form (called a HIPAA form). When you fill it out, write in that you want to specifically allow the following people to discuss details of your case with the doctor (or facility): then list by name your spouse / parents / children and maybe a friend. Then ask for a copy of the form (They get to keep the original). This will help save time when you need to send someone to pick up reports or films, or to ask questions for you. By having a copy, when they tell you they can’t give your children something or talk about something to anyone other than the patient – just show them the form and they have to allow it! Advance Directives and Durable Power Of Attorney – We all hate to think about these things, but it can save a lot of trouble later if you handle this now. An advance directive tells your doctor what kind of care you would like to have if you become unable to make medical decisions. A Durable Power Of Attorney lets you designate who will make medical decisions for you if you are unable to. The first time you are admitted to a hospital, they will ask if you want to fill out the forms for these. Do it, and ask for a copy and keep it in your binder. Or search google.com for “Advanced Directives in [your state]” (each state has different laws and forms). It is very important to tell your family who your medical power of attorney will be and to tell them what your values are and what kinds of medical treatment you would want or not want, including breathing machines and feeding tubes, if your condition were to worsen and you were unable to communicate or were in a coma. • Phone numbers – Record the name, address, phone number, email address, and a
short description of all of your important contacts: include your family members who should be contacted in an emergency, all of your doctors, your lawyer and financial advisor and/or insurance agent. Second, Third & Fourth Opinions – Diagnosing a specific type of brain tumor can be a
complicated affair, making confirmation of your diagnosis essential. Second opinions
should come from experts within a specific area, such as those who are experts in the
removal of brain tumors -- neurosurgeons performing at least twenty-five brain surgeries
per year, or an expert in neuro-pathology who can qualify the diagnosis of your tumor
biopsy. It’s estimated that as many as twenty-five percent of brain tumor patients will
have their diagnosis changed upon further examination by a second, expert opinion,
which can drastically change not only the prognosis, but the recommended treatment
plan. If your primary physician is not familiar with the most current treatments or clinical
trials available for patients with brain tumors, request that he/she consult with one of the
many major brain tumor centers and arrange for you to obtain a second, expert opinion.
Some insurance plans may limit your options to expert or multiple opinions, such as
those from major brain tumor centers. Most states provide for a written appeal process of
policy limits; a process that your physician can assist with by providing a statement of
your condition and needs. Regardless of policy limits, there are options available to you
and every reason to pursue them diligently.
A review of your MRI or CT, along with an overview of new resources and treatment
programs can be obtained through many of the leading major brain tumor centers.
For a list of major brain tumor treatment centers and the consultation services they offer,
Your physician can also consult with The National Cancer Institute. If you need to
contact them on your own, they will also review your case for free. They have excellent
adult and pediatric brain tumor specialists available to help you. Their contact
information is available from our advanced search form
(http://virtualtrials.com/serchfrm.cfm) by selecting National Cancer Institute for the
Including Loved Ones and Caregivers – It’s all too common; you enter your doctor’s
office with a list of questions and as your physician begins to satisfy his/her query of
information, you forget your questions, or worse, forget their answers. Emotions, not
your brain tumor, are typically responsible. Emotional support and a second pair of ears
can be of tremendous help while you navigate through a new world of tumor
Whenever possible, take a friend, loved one or caregiver with you, even for seemingly
routine appointments. Aside from taking notes of your session, should an overwhelming
moment arrive during your physician’s explanation of a particular treatment, necessary
tests, risk factors or expected results, another person will often hear (or interpret) details
differently and be able to ask questions that you might not think of at that moment.
Encourage them to make frequent notations or observations in your personal treatment
binder and take an active role in your care options. If your physician will allow recorded
sessions, have your companion manage a small, hand-held recording device and review
the discussion afterwards with you.
Support Groups – The Internet offers an unlimited resource for brain tumor patients,
including online support groups – sometimes called “mailing lists” or “listserves”, chat
groups and message boards for sharing experiences and treatment options with others
who understand what you’re going through. Support groups, those found on the Internet
or a local group sponsored by your hospital/regional cancer organization, can often assist
with non-medical issues as well, such as nutrition, relationships, and/or financial
Go to: http://virtualtrials.com/lists.cfm for a list of online support groups. There are many
different groups with different focuses. The best group for medical discussions about
brain tumors is the brain-temozolomide group. (The name of the group is misleading – it
is now for all treatments for brain tumors – but it was originally started for just talking
about the drug Temodar). Go to: http://virtualtrials.com/support.cfm for a list of “real
world” support groups. Most people are shy about joining a support group – but don’t be. You will be amazed at how quickly you feel at ease – because the members know and understand what you are going through – something (hopefully) nobody else in your circle of friends know about. A word of caution: support groups (both online and “real world”) play an important (and
in many cases, vital) role in maintaining a positive outlook during treatment, as well as
staying up to date on the latest brain tumor issues. However, you have to be cautious and
evaluate how much you can trust anything you find. There are bad people out there
looking to make money off of your misfortune, and even people who are trying to help
might inadvertently supply you with misleading information. NOTHING on the internet
– or a support group meeting – can be taken as medical advice. You have to research
anything you find and discuss it with your doctors. The chat rooms are most susceptible
to problems because there may not be other people to discuss the pros and cons of the
treatment. On the other hand, in an online support group like the brain-temozolomide
list, you can ask for many people’s experiences with a treatment and get a broader view
The Brain Tumor Virtual Trial – This is a study being run by the Musella Foundation.
It is a database of brain tumor patients, the treatments they are using and the outcomes.
Participants record the treatments that they and their doctors decide to pursue (we do not
tell you what treatments to do – we just record the outcome). There is no cost to
participate. The patient or caregiver records information in simple forms on our website,
and posts an update every month. We send email reminders on the first of every month.
You also send in a copy of each of your MRI reports and pathology reports (not the
films) so that we can verify the information.
Participants get to view the ongoing results of the project. The idea is to try to identify
which treatments – or combination of treatments - are working the best.
In addition to providing greater insight to beneficial therapies for researchers, participants
become expert managers of their condition, and can generate reports on the information
they entered – such as a graph of their status over time. To join, or for more information,
go to: http://virtualtrials.com/brain
Mind, Body & Soul – While your primary physician may appear anything but spiritual
in his/her approach to your brain tumor, many within the medical community are aware,
and in support of, the power of prayer. Prayer, while very personal, can be empowering
and pro-active at times when “control” seems out of reach. To add your name to the
Musella Foundation prayer list, visit: http://www.virtualtrials.com/prayer.cfm
Brain Tumor Guide: FAQ
What are the different types of brain tumors?
Brain tumors are described by where they are located in the brain and what kind of cell
they started from. Primary tumors begin in the brain, while Secondary tumors are caused
by tumor (cancer) cells that spread to the brain from another “primary” source in the
body, such as breast or lung cancer.
Primary brain tumors are classified (diagnosed), in part, by the type of cell it originates
from. For example; Astrocytomas come from astrocytes, oligodendrogliomas from
oligodendrocytes, meningiomas from meningeal cells and medulloblastomas from
medulloblasts, just to name a few.
What is a glioma?
The most common type of primary brain tumor is a glioma, originating in the brain from
glial cells. Glial cells are the “support cells” of the central nervous system, helping
neurons and nerve cells do their jobs – communicate information through electrical
While glial cells can belong to several families of cells, most gliomas are made up of
either astrocytes or oligodendrocytes, thus, these tumors are also frequently called
Astrocytomas or Oligiodendrogliomas (oligos). The terms glioma and astrocytoma are
sometimes used interchangeably, although this isn’t technically correct.
High grade (malignant) forms of these gliomas are called Glioblastoma Multioforme
(GBM), Anapalastic Astrocytoma, and Anaplastic Oligodendroglioma. They are
considered fast growing, rapidly invading nearby tissue.
Cellular makeup, speed of growth, location of the glioma, and even the age of the patient
can all affect tumor behavior, resulting in a variety of symptoms and different
experiences among patients. For this reason, you must guard against assuming that one
person’s outcome of treatment for a “like” tumor will be yours.
For more information on specific types of tumors (and treatments), visit the National
Cancer Institute's Brain Tumor Information Page
What does “tumor grade” mean?
All tumors are given a “grade”, meaning a specific classification that relates to the
current speed of growth and the potential to interfere with brain function. Grading is a
determination of what stage, or how advanced (bad) a tumor is in its development.
Diagnosing and “grading” a specific tumor type has been described as something that is
as much an “art form” as it is a science; typically a determination made by a pathologist
after a biopsy. But grading can be somewhat controversial depending on the size of
biopsy specimen obtained. One part of the tumor may have smaller, lower grade cells,
while larger, more aggressive cells are present in a different location of the tumor.
Furthermore, tumors initially assigned a low grade can become aggressive in growth,
changing the status of the grade as well during the course of treatment. It is important to
have your biopsy examined by a neuro-pathologist who sees a large number of brain
tumors, requesting always, a copy of their report for your records and comparison.
Both type and grade of a tumor is critical to your diagnosis and treatment, which is why a
second opinion regarding biopsy specimens is so important.
The most common grading system is called the WHO system based on its approval by the
World Health Organization. The WHO system classifies all cancers on a grade of I – IV
(1 – 4), a grade of 1 or 2 being slow-growing, “benign” tumors. Grades 3 and 4 are faster
growing and are considered malignant. A grade 3 is called an “anaplastic astrocytoma”
and a grade 4 is called “glioblastoma multiforme”.
When dealing with brain tumors, the word “benign” is a little misleading. It implies that
the tumor is not dangerous. Unfortunately, the brain is enclosed in a rigid container (the
skull) that allows no space for a tumor mass to grow. As a tumor (even a “benign” tumor)
grows, it builds up the intracranial pressure and compresses everything around it – which
can lead to neurological problems and even death. Luckily, there has been a lot of
progress in the treatment of the “benign” brain tumors. One type, the acoustic neuroma,
used to be incurable and usually fatal. Now, it can be cured in over 95% of the patients,
sometimes with a relatively simple radiation procedure. There is controversy over which
way to treat it – either radiation or surgery, but both options are so good that the decision
is now made by trying to determine which treatment will have fewer side effects – as
both are curative.
Just be aware that a few hospitals use a different grading system for brain tumors, using a
scale of 1 to 3, where WHO Grades 1 and 2 are combined into “Grade 1” and the rest are
moved down 1: an Anaplastic Astrocytoma is then a grade 2, a GBM is then a grade 3.
The terms Anaplastic Astrocytoma and GBM are more precise.
For more information on grading brain tumors, visit;
How long has the tumor been there?
It’s not an easy question to answer, but slow growing tumors can be present for years
without causing any symptoms. Fast-growing tumor types can occur and cause symptoms
within a span of six months or less. Nobody really knows how long you had your
Are brain tumors the same as brain cancer?
This is controversial. There are arguments for both sides: some argue that a brain tumor
rarely spreads outside of the brain, so it isn’t “cancer”. Others argue that it has the
potential to grow and be deadly, so it is. I feel that brain tumors should be considered
Can brain tumors be removed surgically?
In many cases, yes, they can be removed with surgery. Surgery may actually “cure”
some low grade tumors, such as an Acoustic Neuroma. However, for the high grade
tumors, surgery is not a cure – it does buy time for other treatments to work, offers an
opportunity to get material for a biopsy and drug resistance assay, and an opportunity to
use treatments that require surgery, such as Gliadel wafer, Gliasite Radiation Therapy
System, and many clinical trials. Any tumor can theoretically be removed, but the
neurosurgeon uses his experience to make a judgment on the risks versus the benefits.
Each tumor is different, but the neurosurgeon can usually predict if – and how much –
neurological damage will be done if the tumor is removed. Since surgery for the high
grade tumors isn’t a cure, sometimes they are considered inoperable if the expected
neurological problems would create unacceptable problems for the patient.
In brain surgery, experience matters a LOT. Doctors who operate on a lot of tumors can
usually remove more of the tumor, with less side effects than doctors who only operate
on a few. They are also much more likely to have the latest high tech surgical tools
available. In general, the more of the tumor removed, the better the outcome. This is
why the single most important decision you have to make is WHERE and by WHOM to
have treatment. What is considered inoperable by one doctor might be considered
relatively easy for a more experienced doctor.
Furthermore, while there are over forty-five hundred neurosurgeons in the United States,
only one-hundred and twenty five (approximately) are considered experts in the removal
of brain tumors, performing these delicate surgeries at least twenty-five times per-year or
more. Again, an experienced neurosurgeon can impact the outcome of tumor removal and
recovery, making a second opinion with such an expert vital. Go to
http://virtualtrials.com/btcenters.cfm to find a brain tumor center near you.
What are the survival statistics for patients with brain tumors?
While statistics, given their nature to measure percentages based on populations as a
whole, not individuals, are often discouraging to the patient with a brain tumor, they fail
to factor many items that must be accounted for on a case-by-case basis, such as age,
general health, the tumor’s involvement and location within the brain, and much more,
including but not limited to, access to advanced brain tumor experts.
Surgical technologies and the ability to accurately diagnose a brain tumor have improved
dramatically, and on-going, progressive clinical trials are leading the way to new and
better treatments. Your ability to challenge "statistics" will greatly depend on
surrounding yourself with a medical team that does not fall prey to such "statistics". Try
to avoid those within the medical community who have an unfortunate and bleak outlook
and may not be current in their understanding of progressive new treatments. Physicians
associated with, and in consultation with, leading brain tumor medical centers are your
best defense against negative mortality statistics and will enhance your ability to remain
positively engaged during your journey through treatment.
Harvard University professor, Stephen J. Gould, wrote about the nature of statistics
during his battle against a rare tumor, called “mesothelioma”. His essay, “The Median
Isn’t the Message” can be found at Steve Dunn's cancer guide.
Look at the survivor’s stories at virtualtrials.com/survive.cfm – look for people with your
tumor type to see some people who are leading normal lives. These people prove that no
tumor type is completely hopeless. Participate in online and real world support groups to
meet others who are going through the same thing as you – but many years out and doing
well. It is important to see that there are people who do well.
What type of physician-specialist should I see?
Your medical team will likely include several experts who are experienced in various
specialties including, but not limited to, neuro-oncology (the medical treatment of brain
tumors), neurology (conditions of the brain and spinal cord – the nervous system),
surgery, radiology (MRI/CT), radiation therapy, and pathology (the study of tissue). The
make-up of your team will vary depending on the type and location of your tumor, and
may include those with a variation of names and cross-specialties, but should always
comprise a team experienced specifically in the treatment of brain tumors.
A medical (board-certified) oncologist treats many forms of cancer, however, not all
oncologists are experts in treating brain tumors. As part of your medical team, your
general oncologist can assist you with obtaining second opinions and researching
available treatment options, but should refer you to a neuro-oncologist, experienced in
the treatment of brain tumors specifically. Most neuro-oncologists are neurologists,
treating disorders of the nervous system. Whether your physician-expert is called a
neurologist or a neuro-oncologist is not as important as whether or not they have
experience with your type of tumor. It is important that you establish their experience in
treating your type of tumor and are up-to-date on advances in both surgery and alternative
A neurosurgeon is someone who performs surgery involving the nervous system,
typically specializing in one particular area or system, such as the spine. Not all
neurosurgeons are experienced experts in systems relating to the brain and/or the removal
of brain tumors. An expert commonly performs twenty-five (or more) brain surgeries per
year to remove tumors. Of the current estimated forty-five hundred neurosurgeons, only
about one-hundred twenty five are considered experts in the removal of brain tumors to
date. Before considering any surgical procedure, it is important to know the experience
level of your neurosurgeon, opting for a second opinion (preferably) from a neurosurgeon
associated with a major brain tumor center.
While some neurosurgeons also practice neuro-oncology and oversee the administration
of chemotherapy treatments, most confine their care to surgical therapy and follow-up
A neuro-radiologist is a specialist in the area of reading MRI and CT scans involving
the nervous system. Your MRI or CT scans should always be reviewed by a neuro-
radiologist experienced with tumors within the brain.
A radiation oncologist specializes in the administration of radiation therapy (solely and
specifically) and should work in cooperation with your neuro-oncologist/surgeon to
develop an appropriate course of therapy (duration and intensity).
Other specialists you should consider for complementary care throughout your treatment
and recovery include:
• Rehabilitation Specialists (physical/speech therapist, occupational therapist) • Neuropsychologist/Psychiatrist • Endocrinologist (Internal medicine specialist to monitor blood sugar levels, liver, kidney, and other organ functions and chemistries adversely affected by medication and treatments) • Ophthalmologist (eye doctor) • Dentist (especially important prior to chemotherapy) • Tumor board at your hospital of care Brain Scans
Brain scans allow the doctors to get an idea of what is going on inside the head. No scan
is 100% accurate, and they are open to interpretation. The more experienced the doctor
reading the scans, the more confident you can be in the results. As mentioned elsewhere,
it is a good idea to get a copy of the films (or a cd of them) and the report. You can show
this to your doctors and make sure they agree on the reading of the scan. If not, get
multiple opinions. The copies are also useful to have in case you need a quick second
opinion from other brain tumor centers, and in case the originals are lost – which happens
more than you would think!
A CT scan (or CAT scan – computerized axial tomogram) uses x-rays to generate a
computer simulation of a picture of the cross section of your head. Usually they inject a
contrast agent (a dye) into your arm halfway through the test, to enable the tumor to show
up better. A CT scan is readily available and much cheaper than an MRI. A CT scan
shows some things very well, such as bleeding into the brain, signs of swelling and is
sometimes used for planning surgery and radiation. Since CT scans use x-rays, there is a
tiny risk with their use, so they are usually limited to only when absolutely needed,
especially in children.
MRI (Magnetic Resonance Imaging) uses magnetism and radio waves to create a
“picture” of the inside of your head. It is more detailed than a CT and usually preferred
when trying to diagnose a brain tumor. An MRI will find smaller tumors than a CT scan.
A different contrast agent is used for MRIs than for CT scans, so if you had an allergic
reaction to the dye used for a CT scan, you can still usually use the contrast agent for an
MRI (and visa versa). You sometimes can not have a MRI if there is any metal in your
body. If there is any metal in your body – tell them when you make the appointment so
they can determine if it is safe. Other than the problem with metal, MRIs are thought to
be safe and there is no limit to their use. They are expensive, but readily available.
There are many variations of MRI available – here are a few of the important • MRA (Magnetic Resonance Angiography) shows details of the blood vessels.
• MRS (Magnetic resonance Spectroscopy) shows the chemical makeup of the
brain, which can sometimes be used to tell the difference between radiation necrosis, normal brain, swelling and tumor. It can also sometimes tell the difference between low grade and high grade tumors, and to pick the best area for a biopsy. It is now also being used to tell if treatments are working – much faster than regular MRIs can tell. They are most useful when repeated – to compare with the previous scan to see if you are getting better or worse. This is available at most brain tumor centers and is starting to become available everywhere. • fMRI (Functional MRI) – this scan measures blood flow in the brain, and is used
to try to map which areas of your brain control which functions. For example, if the tumor is near your speech area, they will ask you to talk while doing the scan, to highlight the areas you use while talking, to see if the tumor invades that area. • Diffusion MRI – a new variation that measures water movement in the brain. It
can be used to determine how well the treatment is working. See: http://virtualtrials.com/news3.cfm?item=3061
PET Scan: (Positron Emission Tomography) – Uses a tiny amount of a radioactive
substance injected into your arm., and it shows how metabolically active (how much
glucose is being used) each area of the brain is. This can be used to help determine (it
isn’t perfect) the difference between tumor, swelling, radiation necrosis and normal brain.
It isn’t available everywhere, and is expensive.
Treatments of Brain Tumors
Standardized treatments for brain tumors are not unlike those for most cancers; surgery,
radiation, chemotherapy and immunotherapies. For definitions of treatment terms, visit
our dictionary at http://virtualtrials.com/dictionary.cfm Official government information
on treatments can also be accessed at: http://clinicaltrials.gov For additional information
on specific treatments, as well as, general information on chemotherapy, radiation,
immunotherapy, and surgery, visit: “Noteworthy Treatments” section of our website at:
http://Virtualtrials.com/noteworth.cfm and our video library at
Surgery is usually the first treatment. In some low grade tumors, it is curative and no
further treatment is needed. Unfortunately, for the majority of brain tumors, additional
treatments are needed.
If you were just diagnosed and about to have a surgery, there are a few treatments you
should ask the surgeon about such as Gliadel Wafer and Gliasite Radiation Therapy
System. Ask if there are any clinical trials that require a surgery and ask about the
possibility of doing a Drug Resistance Assay. You can read about them in later chapters
just know that you need to ask about these things!)
Surgery (for a high grade brain tumor) should be looked at as an opportunity to use a
treatment or do a test that requires surgery, since you don’t want to have an additional
surgery just to implant something or get a tumor sample.
Be aware that most long term high grade brain tumor survivors have had multiple
surgeries. In general, the surgery won’t be as bad as you expect. The worst part may just
be worrying about it the night before. There are risks to surgery anywhere in the body,
but surgery today is so much safer and easier than it was even 10 years ago. Serious side
effects are much less common than they used to be – so don’t let horror stories from the
past bother you.
Following surgery, radiation and chemotherapy at the same time is currently the standard
of care (for high grade gliomas only). Radiation is given 5 days a week for 6 weeks, and
the oral chemotherapy drug, Temodar, is usually used at the same time.
After radiation is completed, Temodar is usually continued. For GBMs, it is approved for
only 6 months following radiation, but in practice, it is used until it either stops working
or until it is no longer needed – no tumor on the scans (MRI and MRS or PET) for a few
Some brain tumor centers add a second (and sometimes a third) drug to the Temodar to try to make it work better. Some of the drugs being used are: Thalidomide, High Dose Tamoxifen, Accutane, and Celebrex. For an overview of Temodar, go to: http://Virtualtrials.com/temodar for a look at the research reports on Temodar and combinations, look at the “Review of Temodar” and the “Update to the Temodar Review”, both in the Temodar section of our website. In some cases, if there is still tumor on the scan after the “standard” radiation, an additional dose of a very focused form of radiation, called stereotactic radiosurgery, may be tried. If these treatments do not work, (or they may be considered instead of the standard therapy), then other therapies are considered. There are 2 general classes of treatment: “FDA Approved” or “Experimental”. • “FDA approved” treatments have been deemed “safe and effective” for at least 1 disease. Not necessarily for brain tumors. If they were not approved for brain tumors, your doctor may still prescribe it for your brain tumor. This is called “Off Label Use”. Many drugs used commonly for brain tumors are used off label. Although legal, and easily available, you sometimes have trouble getting your insurance company to pay for off label usage because they argue it is experimental. In such cases, know that you can fight the insurance company’s denial. You should enlist your neuro-oncologist to help get it approved by your insurance company. • “Experimental” – The treatment has not been approved yet, and may be hard to obtain. A clinical trial (defied below) is the best way of trying experimental therapies – as the doctors will watch you very carefully for signs of side effects. Be aware that there is a mechanism for using an experimental drug outside of clinical trials – only for those who do not qualify for the usually rigid entrance criteria of clinical trials. This is called “Compassionate Usage”. Clinical Trials – often referred to as experimental treatments – are providing new
inroads to extended life expectancy and an improved quality of life for many patients.
Although well-designed clinical trials are dependent upon patient participation, not all
physician-specialists are aware of the many programs available. Understanding current
availability of clinical trials requires time and due-diligence, something many physicians
lack. You must search out the appropriate trials available for your specific tumor-type,
always advocating in your own best interest towards a cure. A complete introduction to
clinical trials can be found at Terry Armstrong's clinical trials summary.
Understanding Clinical Trials
Most clinical trials are designated as phase I, II, or III, and are based upon specific
questions that a particular study is seeking to answer. In most cases, the following is true:
• Phase I – examination of a new drug or treatment in a small group of people (20- 80) for the first time to evaluate its safety, determine a safe dosage range and identify potential side effects. • Phase II – the study drug or treatment is given to a larger group of people (100- 300) and further measured for effectiveness and safety. Dosage of medication may be increased to determine toxicity levels. • Phase III – the study drug or treatment is given to large groups of people (1,000- 3,000) to confirm its effectiveness within a sizable population, monitor side effects and toxicity levels, compare it to the standard treatments, and further determine safety. These phases are defined by the Food and Drug Administration in the Code of Federal
Why should you consider participating in a clinical trial?
For most types of malignant brain tumors, there is no cure. Clinical trials provide access
to some of the newest and most promising treatments that are still being investigated in
areas for which there are no curative measures otherwise available, or for which a better
delivery of therapy with fewer damaging side effects may be possible. In many cases,
these trials -- guided by experts in their field -- may represent your best possible chance
for survival, or perhaps, an opportunity for a better quality of life. By participating in a
clinical trial you help researchers take one small step, or perhaps even a giant leap, closer
to a cure. Aside from helping yourself, your experiences help advance the state of the art
in the field, which may lead to better treatments in the future.
When should I consider a clinical trial?
The decision of when to participate in a clinical trial varies among patients and should be
discussed with your doctor. Some patients and physicians feel more comfortable
exhausting traditional treatment avenues first. Others choose to participate in trials from
the onset of diagnosis. The decision is not only a personal one, but should be made based
upon a confirmed diagnosis, backed by second opinion. You may wish to discuss certain
points of progress (or lack of) with your doctor as a guideline to help you with your
decision. Obviously, if you have a low grade tumor that has good treatments available,
you would be less likely to try something experimental. If you have a high grade tumor
where the expected outcome of the standard treatments is not acceptable to you, it is
easier to make the decision to try something experimental.
Clinical trials each have their own set of requirements that might include the age-range of
participants, location of the tumor, grade and/or type of tumor, or a specific degree of
stabilization before a patient is admitted to the trial. Some clinical trials are specific to
patients experiencing a recurring tumor, rather than a first-time diagnosis. Whether or
not you decide to wait or move forward, it is important to research available trials early
for your specific type of tumor and know if, or when, you might qualify in advance.
One thing to keep in mind is to plan ahead and think through a large range of
contingencies. Some treatments will disqualify you from trying some experimental
treatments. In such a case, you will usually not have enough real data to make an
informed decision. In the old days (over 5 years ago), it was an easy decision – the
standard treatments had so little hope that you had nothing to lose. The standard
treatment (surgery with Gliadel, radiation with Temodar then Temodar + another drug)
have progressed to the point where you now have a difficult decision to make.
How do I assess a clinical trial?
The best way to evaluate if a clinical trial is right for you is to speak with your primary
physician, your neuro-oncologist or surgeon, and other members of your health team
including those from whom you have turned to for second opinions. You might also
contact one of the major brain tumor centers for additional insight to a specific clinical
trial. You should also consult with the physician in charge of the trial. It is always helpful
to know what other trials the charge-physician has participated in, or is currently
participating in. Lastly, it is important to ask any physician not in favor of your
participation, why not? What would they recommend instead, and why?
Although individual cases are meaningless statistically, the experiences of others may
help give you enough information to choose between two treatments that are otherwise a
toss up. You can find these individual experiences in the online support groups, real
world support groups and the brain tumor virtual trial results.
How do I find clinical trials?
Our website, http://Virtualtrials.com, offers some of the most current information
available regarding clinical trials. We offer many ways to find a trial – see the Appendix
for a listing of the ways to search. Also check http://clinicaltrials.gov – they have some
trials that we do not yet have listed, and we have some that they don’t have. Together,
most of the important trials are listed!
Taking Responsibility for Your Medications & Safety
In the treatment of brain tumors, not unlike any other acute or chronic illness, a variety of
medications are used to combat symptoms, such as pain, fatigue, swelling and seizures.
They may include antibiotics, steroids, analgesics or narcotics and anti-convulsants.
As your medical team will be made up of physicians from various specialties, all of
whom may prescribe different medications or alter dosages in the context of your care,
it’s vital that you keep ongoing and accurate (up-to-date) records in your treatment binder
regarding your medications, including:
• Medications you’re currently taking (including dosages) and who is responsible for monitoring you (prescribing physician) or providing refills. This information can be very helpful to a caregiver seeking information or assistance on your behalf. • Medications you have taken in the past, noting their value (i.e., was most helpful • Medications discontinued due to negative side effects
• Any allergic or adverse reactions, mild or otherwise – note them in RED
• Ask your doctors to review your list of current medications prior to prescribing • Check to ensure that the recommended drug is covered on your insurance plans drug formulary, or if you’ll need a prior authorization. • To avoid receiving the wrong medication at the pharmacy (a growing concern), write down the specific medication and dosage as stated on your prescription
before submitting it to a pharmacist -- compare this information to the label on the
bottle to ensure it is the same drug as stated on the prescription. Note: The nurse
or receptionist will typically be happy to make you a photocopy of your
prescription upon request for comparison later, in lieu of writing the information
• Some pharmacies practice what is called drug-switching -- automatically “switching” your prescribed medication to a generic or substitute (less expensive) drug, as per your insurance plan or covered drug formulary. If the medication you receive is different than what was written on the original prescription by your physician, insist that the pharmacist call and confer with your physician BEFORE taking the medication. • In general, generic drugs are as good as the brand name equivalent. The only exception is drugs that have a narrow therapeutic index, such as some heart medications and some seizure medications. If you need to use generics, insist that the pharmacist at least give you the same brand of generic. Ask them to write it down for you. If you have to switch brands of seizure medicines, tell your doctor and ask for blood levels of it to make sure it is reaching the same blood levels.
Whenever possible, having all your prescriptions filled through a single pharmacy source
can be a safeguard against medical errors, preventing adverse drug interactions, as most
pharmacies now utilize computer systems that automatically flag dangerous interactions
based upon your previous medications. Should your physician fail to recall a particular
medication that might present a problem, chances are your pharmacist will catch it. Still,
asking your physician(s) to review your medication sheet in your treatment binder – each
and every time a new drug is prescribed – is an important, life-saving step.
It’s important that you read and understand the side effects and drug interactions of all
the medications you are prescribed. Additional information regarding your medications
can be found in the Physician’s Desk Reference (PDR) found at your local library, or
through online sources, such as RXMED, Drugstore.com, The Mayo Clinic, and The
University of Washington, including rare side effects not covered within this guide.
The following is a general list of medications commonly used to treat symptoms and/or
conditions caused by a brain tumor itself, or resulting from surgery and/or other
standardized treatments of brain tumors. Many of the significant/common side effects
regarding a particular medication are noted, but may be incomplete. You physician may
recommend medications not covered within this general guide and you are advised to
discuss and understand all the benefits and side effects with your physician thoroughly
before a prescription is issued. Physicians are often creatures of habit – ask about
alternative medications and why he/she would choose the recommended medication over
another. This is a general overview – always ask your doctor before taking anything –
even over the counter pain medications.
Because the brain itself does not feel pain, studies show that pain is often overlooked by
physicians treating patients for brain tumors. However, pain, as a by-product of disease or
due to complications from surgery or other forms of treatment, is very real and deserves
real attention. Headaches from brain inflammation or tension, scalp sutures, muscular
pain and hairline fractures due to steroid therapy, and pressure points on arms and hips
from extended bed rest can all attribute to pain and require medication. Pain left untreated
can slow healing, deplete emotional reserves, exacerbate depression and sleep
deprivation, and detract from your quality of life.
Mild Pain -- can usually be managed with Tylenol or Advil (Note – aspirin can effect
how fast your blood clots – which may be bad if you need surgery – or good as it
prevents blood clots – but ask your doctor about it first!).
Moderate Pain -- slightly more powerful prescription medication, such as Percocet,
Darvoset, and Percodan (which contains aspirin), can be taken as directed by a physician.
Acute Pain -- Codeine, Vicodin, Oxycodone and stronger, morphine-type medications
are typically long acting and taken less frequently. Many also come in “patch” form for
slow absorption and continuous relief. Ritalin (used to treat attention-deficit disorders),
taken in small doses with pain medication, can increase the narcotic effect (enhancing
pain relief) while reducing the drowsiness commonly associated with these drugs. Ritalin
has also been shown to benefit patients who suffer from fatigue.
According to the pharmaceutical disclosure (package insert) for morphine, this drug
should not be used in patients with brain tumors, however, when necessary, physicians
will prescribe morphine as an off-label pain control measure. Discuss any concerns you
might have with your physician.
Steroids are powerful anti-inflammatory drugs typically prescribed to reduce swelling in
the brain (cerebral edema) before and/or after surgery, during radiation treatments, or to
relieve symptoms such as memory loss and limb (arm/leg) weakness caused by brain
swelling. While common, swelling can be harmful if excessive and must be controlled.
Synthetic steroids such as Decadron and Hexadrol (common brand names for
dexamethasone) are man-made hormones similar to cortisol, which is produced naturally
by your body. Taken orally, these steroids create higher levels in the body than what is
normally secreted, reducing inflammation, but also causing the body to temporarily stop
natural production on its own. For this reason, it is very important to “wean” yourself (cut
back slowly) when stopping oral steroid therapy. Always follow your physician’s
recommended schedule for reducing dosages. During this reduction period, your body
will slowly come back “on line” and begin to produce normal cortisol levels again. You
should never abruptly stop taking steroid medication, as in extreme cases, going cold
turkey can cause sudden death – the body not yet ready to resume full production of
cortisol on its own, a necessary and vital hormone.
While the benefits of steroids are undeniable, often unmatched by any other medication,
they are not without short and long-term side effects.
• Long-term side effects can include (but are not limited to): • Diabetes • osteoporosis (bone loss) leading to fractures • susceptibility to infections. • Increased appetite, weight gain and indigestion • Swollen or “moon-faced” appearance • Stretch marks, rash/flushing of skin and acne • Brittle bones
• Depression, behavioral changes
Other oral steroidal therapies include prednisone or prednisolone. While not as strong as
dexamethasone (Decadron), side effects are generally the same, although perhaps not as
severe in most cases.
Xerecept is a new medication currently being tested in comparison to dexamethasone
(Decadron) for the treatment of brain swelling (edema), thus reducing pain and adverse
neurological symptoms, most commonly, seizures. For those patients who require high
doses of steroidal therapy to reduce swelling, Xerecept might prove equally (or more)
effective without the side effects of current steroid therapies. Developed by
Neurobiological Technologies, Xerecept is currently in Phase III of clinical trials, open to
patients with malignant brain tumors who require high doses of dexamethasone. For more
information, visit: http://www.ntii.com/products/xerecept_study1.shtml
Roughly 30-40 percent of patients will experience some level of seizure activity and
require medication to reduce electrical responses in the brain. Due to the location or size
of some tumors, many neurosurgeons will prescribe anti-seizure medication as a matter
of routine before, during and/or after surgery when the risk of seizure is considered high.
In the past, brain tumor patients were put on anti-seizure medications routinely for life,
but since they can have a lot of side effects, many doctors now try to minimize their use
In some cases, a seizure will appear as something slight and quick – muscle or eye
twitching, or a sense of being “out of the moment” mentally and/or physically for a brief
time; a blank stare or sudden pause without response. These are called Focal Seizures.
For others, seizures will involve full body activity, often categorized as Grand Mal
Most anti-convulsants share common side effects, such as fatigue and dizziness, so for
obvious reasons you may be restricted from driving a car or operating dangerous
equipment while taking anti-seizure medications, even when seizures have not been
documented or have subsided. Other medications and certain foods can prevent proper
absorption, so frequent blood draws for proper dosage and serum levels are necessary.
Phenytoin, commonly prescribed under the trade name, Dilantin, is the most commonly
used medication to prevent full-body seizures in high risk patients. Individuals
metabolize Dilantin differently, so periodic blood levels are taken to ensure dosages are
adequate and stable. Side effects of Dilantin include, muscle fatigue, dizziness and loss of
coordination, as well as, tooth decay and gum problems. Regular dental checkups and
extra attention to oral hygiene are advised.
Long term use of Dilantin can cause a decrease in certain nutrients, such as folic acid and
calcium. Ask your physician about supplements if necessary. Dilantin can also interact
with other medications, including over-the-counter drugs, birth control pills and herbal
supplements. It’s important to disclose all the medications you take to your physician and
pharmacist. Dilantin can also make some chemotherapy drugs less effective.
Neurontin (trade name for gabapentin) carries similar side effects as Dilantin, as well as,
double vision, tremors and involuntary eye movements. While Neurontin has fewer drug
interactions than Dilantin, it does interact with certain antacids, such as Maalox.
Tegretol (carbamazepine) is an anti-convulsant that is also prescribed in the treatment of
manic depression and other psychiatric disorders. Effective in its ability to control Grand
Mal seizures, Tegretol must be monitored closely with frequent blood levels, as in rare
cases, it may suppress bone marrow production. You should report any onset of a rash to
your physician immediately. Tegretol also reduces or increases the effects of many
medications. Double vision, pounding or slow heart rate, and nausea are noted side
effects with this drug.
Depakote and Depakene (trade names for valporic acid or valproate) are commonly
prescribed for Focal seizures and require periodic blood levels to ensure adequate dosage
and guard against liver damage. As Depakote interacts with many medications, make sure
your physician reviews your current medication list (including over-the-counter and
herbal supplements) at the time of recommendation.
Phenobarbitol (a barbiturate and strong depressant), or Primidone are less frequently
prescribed, as the effectiveness of other anti-convulsants can be more easily achieved
without the potentially addictive qualities.
Keppra (levetiracetam) is a newer anti-convulsant drug. Sometime it is used alone and
sometimes it is combined with other drugs for difficult cases. Keppra does NOT interfere
with chemotherapy drugs.
Nausea is common with brain tumors, as both a part of the disease process itself and of
course, a by-product of radiation and chemotherapy treatment. But the medication
available to treat nausea depends on the cause. Medications to control nausea following
chemotherapy and radiation are typically short-acting, while others are more suitable for
generalized conditions between treatments.
Zofran (trade name for Ondansetron) is used to control nausea caused by chemotherapy
or radiation specifically, usually administered by IV prior to treatment and can be taken
orally after treatment if necessary. Effective for only a few hours, Zofran is limited to
nausea caused by chemotherapy and radiation only, and is not to be taken for motion
sickness or other generalized conditions related to nausea. While mild in nature, side
effects include headache, fatigue, diarrhea or constipation and may exacerbate pre-
existing liver disease.
Kytrill is similar to Zofran in both treatment administration and side effects, although it
may also cause abdominal pain. It lasts up to 12 hours.
Compazine (trade name for Prochlorperazine) is a commonly prescribed medication for
the treatment of generalized nausea, given either orally, via IV, or as a suppository.
Compazine belongs to a family of antipsychotic agents called “phenothiazines”, and may
cause drowsiness, low blood pressure, dizziness, constipation, dry mouth, blurred vision
and sensitivity to light. While effective in the management of nausea, Compazine should
not be used in conjunction with alcohol, may interact with other medications, and could
potentially cause an irreversible condition called Tardive Dyskenesia; involuntary
movements or twitches of the face, tongue or arm muscles. It is important to discuss
possible interactions and side effects with your physician.
Anzamet is a new anti-nausea drug currently being used with success, given prior to
chemotherapy. In some patients, a combination of Anzamet and Decadron prior to chemo
works in cases when the older drugs don’t provide enough relief.
Haldol is another antipsychotic medication used to control nausea with similar risks and
side effects to those of Compazine. Both Haldol and Compazine should not be taken
without a detailed discussion with your physician.
Transderm Scop is a sea-sick drug which can sometimes be used for nausea. It is a patch
that is applied to the skin and works for 3 days per patch. A main side effect is dry
mouth – which can be a benefit when the patient has trouble swallowing and produces
too much saliva.
There are also many alternative treatments: some patients report that acupuncture,
biofeedback and hypnosis provide nausea relief with no side effects and are much
cheaper than most commonly used drugs.
Being diagnosed with a brain tumor alone is enough to create overwhelming anxiety and
stress. It’s important to understand that during the course of treatment, intense and
seemingly “over-emotional” reactions, such as acute depression, sexual dysfunction,
sudden outbursts, and visual or audio hallucination may be the result of medication or a
condition stemming from the tumor itself, not necessarily an emotional response. It’s
important to communicate these emotional changes with your physician and seek out
proper assistance and guidance to help you distinguish the many moods of treatment and
recovery, and to help you cope.
A psychiatrist is a medical doctor who can assist with those conditions that are tumor-
related (impairments directly caused by the presence or treatment of the tumor itself) that
may require drug therapy. Psychologists can provide help with coping difficulties and
mild depression due to issues of long term care, financial strain or the stress placed upon
family and other important relationships. Make sure that the psychiatrist is experienced in
treating brain tumor patients. Ask your neurosurgeon to refer you to one.
Common anti-depressants include Zoloft, Paxil and Prozac, all of which are from a class
of drugs called “selective serotonin reuptake inhibitors”, or SSRI’s. Side effects may
include sleepiness, tremors, diarrhea, nausea, insomnia, increased sweating, weight loss
and decreased sexual ability. Side effects may be reduced when taken with meals;
however, Zoloft in particular, should always be taken with food. In some rare cases,
anxiety and depression may worsen while taking SSRI’s and should be reported to your
physician immediately. Don’t let the risk of side effects stop you from trying these drugs,
if needed. People report a remarkable increase in quality of life when these drugs work.
Herbal remedies may be of some benefit; however, herbal mixtures can adversely interact
with other prescription medications and should always be discussed with your physician
for safety and adequate dosing information.
Brain tumor patients are at a higher than normal risk for developing dangerous blood
clots. Blood clots commonly start in the legs as Deep Vein Thrombosis (DVT).
Symptoms of DVT may include pain, tenderness, swelling or discoloration of the affected
leg, and skin that is warm to the touch. If you develop these symptoms, you must call
your doctor and get it checked quickly. Left untreated, the blood clots can break away
and travel to the lungs where they cause a pulmonary embolism, which may be rapidly
fatal. Symptoms of a pulmonary embolism include sudden shortness of breath, chest pain
(worse with breathing), and rapid heart and respiratory rates. If you develop any of these
symptoms, you must go to the emergency room immediately.
Medications called anti-coagulants help to thin the blood and reduce clotting – the body’s
normal response to help stop bleeding. Heparin (lovelox) is an anti-coagulant that is
given IV, usually for a short period of time to prevent or treat blood clots . Warfarin
(commonly referred to as Coumadin) is an oral medication that can be taken over a long
period of time to prevent blood clots. Aspirin is a milder blood thinner, which some
doctors recommend to prevent blood clots.
While taking anti-coagulants, normal cuts and scrapes may take longer to stop bleeding
or heal, and there is an increased risk of the tumor bleeding into the brain – so these drugs
are a double edged sword – and should be taken exactly as prescribed.
Warfarin interacts with many medications and should be discussed thoroughly with your
physician before treatment. You doctor will also order periodic blood tests to ensure
appropriate medication levels are maintained.
It’s important to note that changes to your diet can have a negative effect on the blood
thinning measures of anti-coagulant medication. Suddenly increasing foods such as
spinach in your diet can adversely affect bleeding times. The sudden introduction of fish
oil capsules (Omega 3’s) as a dietary supplement can also alter bleeding times. While
there is no need to eliminate spinach and other healthy items (including supplements)
from your daily routine, you are advised to maintain your normal diet and not increase (or
decrease) items significantly, or add new supplements without discussing them with your
physician. This is not the time to begin a new diet for weight loss without consulting
It is always a good idea to wear a medical alert bracelet informing medical personnel that
you are taking anti-coagulants in the case of an emergency. They are widely available in
most retail pharmacies and on the internet, inexpensive, and an important safeguard for
Surgery is performed to improve neurological function, confirm your diagnosis by means
of a biopsy (“open biopsy” or “Stereotactic biopsy”), or to completely (“total resection”)
or partially (“sub-total resection” or “debulking”) remove the tumor. With a resection,
you also get a biopsy of the sample removed. You should ask your surgeon for a copy of
the pathology report. You can easily (but it may be expensive – check first) get a second
opinion on the reading of the pathology slides. There is a lot of interpretation put into the
reading of the slides, and this is the single most important test you will ever have in your
life, so it may be worth the money to double check it.
For some benign tumors, surgery may be curative. For the malignant tumors, surgery may relieve symptoms of too much pressure in the brain and allow time for other treatments to work. Malignant tumors can grow so fast that without surgery, other treatments might not have the time to work. Surgery is also an opportunity to try a treatment that requires direct access to the brain. Surgery is performed by a neurosurgeon; however, a general neurosurgeon may not have adequate experience in the removal of brain tumors, and may be less informed regarding current treatment therapies. Most neurosurgeons do not see many brain tumors. You need to find one that specializes in brain tumors. Check out their website and make sure that “brain tumors” is listed as one of their main areas of expertise. An “expert” is defined as one who performs a minimum of twenty-five per year; typically
these neurosurgeons are associated at some level with major brain tumor centers. Studies
indicate that major brain tumor centers and/or surgical teams that perform fifty or more
surgeries a year exhibit better survival rates and fewer complications.
“Brain surgery” sounds like a very scary thing. It is. But as previously mentioned, it is
now much safer and easier than ever. Advances in 3-d computer guided imaging,
intraoperative imaging with ultrasound or MRI, and small endoscopes allow surgeons to
remove many tumors that used to be considered inoperable. There are still some tumors
that because of the size or location are too dangerous to remove, but the limits are
shrinking every year. If you are told that your tumor is inoperable, get another opinion.
Radiation therapy is performed under the care of a Radiation Oncologist or neurosurgeon
typically after surgery or in cases where surgery is not an option due to the location or
size of the brain tumor. The tumor and a small margin are usually targeted by a powerful
beam of radiation. The radiation disrupts the DNA of the cells that are reproducing.
Tumor cells reproduce much more often than normal brain cells, so they are affected
more than normal cells. Normal cells are also better able to repair the damage from the
radiation than tumor cells. We take advantage of this by breaking up the course of
radiation into a number of smaller treatments instead of 1 big treatment (except for a
special form of radiation called “stereotactic radiosurgery” – see below). This is called
“fractionation”, and gives the normal cells time to repair themselves, but not enough time
for the tumor cells to repair themselves between treatments. A typical course of radiation
involves a few minutes of treatment 5 times a week for 6 weeks.
It has been shown that adding the oral chemotherapy drug, Temodar, to radiation makes
the radiation work much better. Ask your doctor about it.
Side effects of radiation can range from mild to severe and include skin burning and
peeling, swelling (edema), diarrhea and nerve damage.
There are many types of radiation:
Whole Brain Radiation: Radiation is applied to the entire brain. This is usually only
used when there are multiple tumors, especially with metastatic brain tumors. In the past,
it was used for all brain tumors, but more focused forms of radiation are now usually
Conformal 3-D radiation – targets the tumor and a small margin with “conventional”
external beam radiation. This spares the normal brain from radiation damage, and is the
standard of care now for most brain tumors.
Interstitial radiation therapy (also known as brachytherapy)- this is delivered directly
to the tumor bed by the implantation of radioactive material. It may be in the form of
radioactive seeds which are implanted permanently or temporarily; via the Gliasite
Radiation Therapy System, which is a balloon implanted into the tumor cavity which is
later filled with a radioactive liquid for a few days then removed. The advantages are a
much higher dose of radiation exactly where it is needed. The disadvantage is that
surgery is needed to implant these devices.
A variation on brachytherapy is targeted administration of a radioactive substance
combined with a monoclonal antibody. The antibody seeks out the tumor cells and drags
the radiation to where it is needed. This is experimental, but shows a lot of promise.
Boron Neutron Capture Therapy – this is a variation on conventional external beam
radiation. A neutron beam – produced by a nuclear reactor – is used. The beam itself
does not harm the normal brain cells or the tumor cells. A special boron compound is
injected into the patient a few hours before the treatment. This special compound builds
up in the tumor cells to a greater extent than in normal cells. When the neutron beam hits
this boron compound, it creates a reaction which kills the cell. It is usually a one day
treatment. It works great in theory and lab animals, but so far hasn’t proven to be better
than standard radiation. There is much work going on to find better boron compounds,
perhaps combined with neural stem cells, to greatly increase the ratio of the boron
compound in tumor cells as compared to normal cells. This holds promise to become a
Stereotactic Radiosurgery (SRS) - While there is no “knife” or incision to expose the
brain involved with radiosurgery, rather a precise, high-dose beam of radiation, it is
considered “surgical” because of the degree of change that transpires following any
Radiosurgery can involve one treatment session, or several (Fractionated) sessions over a
period of several days or weeks, assisted by computer-aided planning. Radiosurgery
delivers a much higher dose of radiation to the target than conventional radiation. In
some low grade tumors it can be curative. For metastatic tumors, there is a good chance
that stereotactic radiosurgery can permanently control individual tumors. SRS is also
sometimes used as a boost at the end of conventional radiation or for small recurrences.
There are many different machines that can be used for stereotactic radiosurgery: Gamma
Knife, Novalis System, Linac, Cyberknife and many more. Each has advantages and
disadvantages – which is beyond the scope of this article. Just know that if you are told
your tumor is too large or the wrong shape for SRS, get another opinion from a doctor
who uses a different machine. For example, the Gamma Knife has a size limit of 3 or 4
cm which the other tools do not have. For more information, look at our video library at
http://virtualtrials.com/video.cfm and look through all of the radiation lectures.
Chemotherapy is the use of powerful drugs to kill tumor cells. These drugs work in
several ways, each unique to the type of treatment recommended, by either a) destroying
the tumor’s DNA directly, b) restricting the tumor cell’s ability to divide, grow and
invade healthy tissue, or c) by blocking the blood supply to the tumor itself and inhibiting
the growth of new blood vessels that would otherwise, feed the tumor.
Traditionally given in the form of pills that are taken by mouth, or delivered through an
IV, new forms of delivery to the tumor site specifically are showing great promise,
reducing the harmful side effects to healthy, disease fighting white blood cells. Two areas
of advanced treatments include injecting the drug into the tumor (Intratumoral injection),
pumping the drug into the tumor under pressure for a better distribution (convecton
enhanced delivery) or by surgically placing a drug-wafer into the tumor cavity that
dissolves over time.
Chemotherapy can be done prior to, during and/or after radiation therapy. For high grade
gliomas, the standard of care now is to have surgery first, then radiation and
chemotherapy with Temodar at the same time, followed by at least 6 months of Temodar.
Common side effects to chemotherapy include, nausea, weakness and fatigue,
dehydration, and low white blood cell counts, which increases the risk of infection.
Because a simple cavity or early gum infection (gingivitis) can quickly escalate into an
acute infection for the patient undergoing chemotherapy, patients are advised to obtain a
thorough dental examination prior to beginning chemo and follow up frequently with
your dental care team.
FDA Approved Chemotherapy Drugs – Note: most of these are not approved for brain
tumors, but are used “off-label”.
Temodar: Also called temozolomide and temodol – an oral chemotherapy. This is the
most popular drug for brain tumors. See http://virtualtrials.com/temodar for details.
PCV: a combination of Procarbazine, CCNU and Vincristine. Part oral, part IV. This was
the most popular treatment before Temodar came along. It is now used as a second line
treatment for when Temodar doesn’t work, and sometimes as a first line treatment for a
type of tumor called an oligodendroglioma. There is a test available to tell if an
oligodendroglioma will be sensitive to PCV. See http://virtualtrials.com/pcv.cfm and
http://virtualtrials.com/oligotest.cfm for details
CPT-11: An IV chemotherapy approved for use in colon cancer, but being tried for brain
tumors. There are early rumors that adding the drug Avastin to the CPT-11 may work
better than CPT-11 alone. See http://virtualtrials.com/cpt11.cfm for details on CPT-11.
There are no published papers yet on adding Avastin to CPT-11, but when there are,
(hopefully by mid 2005)it will be added to that section of our website.
High Dose Tamoxifen – this is approved for use to prevent recurrence of breast cancer,
but is used in much higher doses for the treatment of brain tumors. Only a small % of
brain tumor patients respond to this, but when they do, it can sometimes work miracles.
It is oral with little side effects – a small increased chance of blood clots, and puts
females into menopause immediately. Some doctors add this to other treatments so no
opportunity is lost. Others use this as a last resort. There is a report that inducing a
hypothyroid state in the patient makes Tamoxifen work better. See
http://virtualtrials.com/tamoxifen4.cfm for details.
Thalidomide: this is another oral drug, but works in a unique way – it suppresses the
formation of new blood vessels, which a tumor needs to grow. The major side effect is
fatigue. Some doctor prescribe it in addition to other treatments. See
VP-16 (also called Etoposide) – an oral chemotherapy with minimal side effects. It is
now used as a second line treatment for high grade gliomas. See
http://Virtualtrials.com/vp16.cfm for details.
BCNU and CCNU : These are the oldest – but still useful – treatments for brain tumors.
BCNU is given IV and CCNU is usually given orally. They are basically different forms
of the same drug. Some doctors use these instead of Temodar, or alternating with
Temodar. The major side effect is pulmonary fibrosis – so a breathing test is required
before starting and frequently after. BCNU is making a comeback in a different form –
as directly placed into the tumor bed in the form of wafers – as Gliadel.
Experimental treatments using gene therapy are currently being studied for patients with
recurring malignant tumors who have already completed traditional treatment options,
such as surgery, radiation and chemotherapy. Through the use of gene-altering drugs,
researchers hope to alter the genetic makeup of tumors, restricting their ability to divide
and grow at a cellular level. No gene therapies are currently approved for brain tumor use
in the USA. For more information about gene therapy, visit:
Immunotherapy / Vaccine Therapies
White blood cells are your body’s innate army of defense against disease, foreign
invaders (bacteria, viruses, fungi), and support of overall immune health. For reasons not
clearly understood, the body’s own white blood cells do not recognize the invasive,
abnormal cellular structure of a brain tumor, attacking it as they would other threatening
entities. Vaccine therapies and other immunotherapies such as “IL-13 / LAK Cells” try
to fool these special white blood cells into recognizing that the tumor doesn’t belong – so
that they attack and kill the tumor cells, and don’t hurt the normal cells.
For more information on immunotherapy, visit: http://www.virtualtrials.com/duma.cfm
IL13-PE38QQR – Developed by NeoPharm, this highly specific tumor-targeting drug is
currently being studied within the context of clinical trials for effectiveness in the
treatment of Malignant Gliomas within adult populations.
Part human protein and part bacterial toxin protein, IL13-PE38QQR is attracted by, and
binds to hungry tumor receptor cells while having little effect on normal, healthy brain
tissue. This drug is delivered directly to the tumor site or cavity (post tumor removal)
through small catheters (surgically placed) attached to a pump which slowly push the
drug solution for a period of 2 – 7 days. Its effectiveness (or “efficacy”) is being studied
in comparison to other methods of treatment, such as Gliadel wafers and Temodar.
For more information about NeoPharm’s “IL13-PE38QQR” clinical trials, visit:
Neural Stem Cells – Recent years have opened the door to exciting (and extremely
promising) discoveries regarding neural stem cells in the brain, and their potential for
replacing neurons lost to injury by brain tumors and other degenerative diseases. Glial
cells derived from neural stem cells specifically, hold the key – in the minds of many – to
not only a cure, but the ability to rejuvenate important neurological functions within the
brain by giving birth to new nerve cells.
Much in the way that bone marrow stem cells repopulate an immune system whipped out
by radiation, neural stem cells can be “seeded” within the brain, effectively adopting the
makeup and function of whatever cell type is needed. In studies involving mice, human
neural stem cells matured into the type of neuron and glial cells appropriate for the
particular area of the brain they were introduced, making repair of injured brain functions
possible in the future.
More importantly, neural stem cells have the unique ability to migrate to brain tumor
cells, no matter where they are located in the brain, making them a promising building
block in the search for the cure. Researchers are trying to harness this amazing property,
by adding a payload to these stem cells that can kill the target - creating a neural cell
“smart bomb”, if you will, which would be able to seek out and destroy tumor cells
without harming normal cells.
Sex & Fertility
Effects of Treatment and Medication
For the patient undergoing treatment for a brain tumor, a reduction in sexual drive and/or
the inability to enjoy normal sexual activity is common. Deciphering the origins of such
can be difficult, however, as many factors can, and do, contribute to the problem. While
surgery causes post operative fatigue and temporary physical weakness, chemotherapy
and radiation can greatly impact and reduce your desire for sexual stimulation due to
adverse effects on hormone production. So too can the medication prescribed for brain
swelling, seizures, nausea, anxiety and depression. Physical changes, such as hair loss
and weight gain can further undermine one’s sense of attractiveness and desirability,
deepening the emotional separation from sexual contact. Individually or in varied
combination, these side effects to treatment create, in some cases, a daunting puzzle that
requires patience and communication to piece together.
Complicating the patient’s ability to understand (or prepare for emotionally) the effects of
treatment as it relates to a decrease in libido, is often the health professional’s discomfort
in discussing sex with the same openness and honesty that might accompany a discussion
regarding nausea, diarrhea or even one’s expectation for recovery. For this reason,
patients often find discussing ongoing issues of intimacy beneficial with other members
of their care team, such as a counselor or neuropsychologist who, as a medical doctor, is
familiar with the impact of brain trauma and the effects of medication, as well as, the
emotional toll often carried internally by the patient. While most treatment-associated
dysfunction or lack of desire is temporary, being able to openly discuss difficulties and
options for sexual intimacy with your partner and medical team is key to managing the
extent of disruption, treatment options, and your ability to resume normal sexual relations
Depression is common among brain tumor patients; a condition often controlled with
medication (antidepressants) called SSRI’s (selective serotonin reuptake inhibitors), such
as Paxil or Zoloft. However, these medications can reduce libido by interfering with
sexual desire. A simple change in dosage or medication may aid in restoring libido and
should be discussed with your prescribing physician.
It’s important to discuss potential effects of your treatment with both your tumor
physician and your gynecologist if you take oral contraception – birth control pills.
Chemotherapy may halt menstrual periods temporarily, but precaution against pregnancy
must be maintained due to the devastating effects of chemo to an unborn fetus. Some
chemotherapy medications, as well as, anti-seizure drugs can interact with the
effectiveness of birth control pills, so a thorough discussion with your medical care team
Sex, Surgery and Radiation/Chemo Therapy
In most cases, there are few reasons why one could not have sexual relations while
having radiation therapy or post surgery, however, you should always consult your
physician regarding any precautions they would recommend regarding strenuous activity,
including sex. Fundamentally, both radiation and surgery can result in fatigue, making
any strenuous physical activity difficult. As your strength returns, normal sexual activity
Likewise, unless your physician specifically warns you against sexual activity while
undergoing chemotherapy, normal relations are limited only by the precautions
associated with the drugs themselves. Chemo drugs can be transferred through sperm,
and in some cases, can be harmful to sperm thus damaging to a fetus. Condoms should
always be used during both intercourse and oral sex to eliminate the possibility of
exposing another to the harmful effects of chemotherapy drugs, either vaginally or orally.
As sperm can live for a period of up to three months, it’s important to continue with
condom safeguards during this time. Although dry orgasms can occur naturally on
occasion as men age, chemotherapy can also cause this syndrome to occur. The lack of
ejaculation during orgasm it is not cause for alarm and should have no adverse effect on
Women must take extra precaution against pregnancy during chemotherapy, as birth
defects can result in a developing fetus from chemo drug exposure. Always discuss your
method of birth control with your doctor, specifically any possible reduction in the
effectiveness of your prescribed oral contraception. Chemotherapy can also dry out
mucus membranes within the nose, mouth and vaginal area. Non-petroleum, over-the-
counter vaginal lubricants, can assist with the temporary dryness associated with chemo,
relieving the discomfort and pain most often experienced during sexual relations.
Petroleum-based products can irritate the vaginal area, as well as, weaken condoms, so
they should be avoided.
Additional resources are available that can help you overcome issues of intimacy caused
by fatigue, pain, or limited mobility and include:
Sexuality and Fertility After Cancer by Leslie Schover, Ph.D. New York: John Riley and
Sons, 1997. ISBN: 0-471-18194-3
Enabling Romance: A Guide to Love, Sex, and Relationships for the Disabled (and
People Who Care about Them). by Ken Kroll and Erica Levy Klein. New York:
Harmony books, 1992. ISBN:0-517-57532-9
Sexual Function in People with Disability and Chronic Illness: A Health Professional's
Guide by Marca L. Sipski and Craig J. Alexander. Gaithersburg: Aspen Publication,
Radiation to the head, surgery and most medication used in the treatment of brain tumors
(excluding chemotherapy drugs) do not pose a threat to fertility. If radiation therapy is
aimed at locations other than the head, you should consult your radiation oncologist about
fertility concerns prior to beginning treatments. Often, a lead apron can provide adequate
protection to sex organs during radiation treatments.
Chemotherapy can have a real and permanent effect on fertility in men, reducing or
eliminating sperm production. While reversible in most cases, it may be a number of
years before sperm counts return to normal.
In women, chemotherapies can temporarily halt menstrual periods, but normal menses
should resume after treatments are concluded. Alkylating agents, however, can affect
female egg production (effects worsen for older women), so concerns regarding fertility
should be discussed prior to beginning treatment.
Personal concerns and the importance of fertility is an individual decision, and while not
always the priority of the physician who is basing his/her treatment on life-saving
measures, should be discussed before beginning any form of chemotherapy. If necessary,
you should insist upon it.
Fertility experts can advise you about the possibility of sperm-banking, in the case of a
male patient, or the advancing options for women regarding egg harvesting and
fertilization techniques. Sperm banks typically suggest a minimum sperm count to be
frozen and used at a later date, but count alone (if low) should not discourage you. A
fertility expert can best advise you regarding your chances of success in the case of a low
sperm count and other options available to you.
Impotence, while rarely the result of brain tumor treatments, can occur as a result of
depression. For those who experience more than the occasional (normal with aging)
sexual dysfunction, consult your physician about medication and other available
Fertility experts or physicians/therapists dealing with sexual problems near you can be
located by visiting the American Medical Association or the American Society for
Reproductive Medicine. Additional resources are available from the American
Association of Sex Educators, Counselors, and Therapists.
A couple of years ago I joined a diet club and managed to lose a lot of weight. I gained it back in stories, though; many of them about various aspects of food, and why it means so much to us. This is the tale of one woman’s dark and complex relationship with baked goods. She isn’t me, but I know how she feels. The thought that she might be pregnant came to her quite suddenly, during the a