Standard radiation is done using a linear accelerator which is often referred to as "external beam radiation".
LIVING WITH A MALIGNANT BRAIN TUMOR:
A Patient's Survival Guide
by
Steve DePesa
with collaborative research by
Andrew Frew
note : We are sad to report Steve lost his battle with cancer 7/1998.
The information in his website is being reposted in the hope that it can make a difference to anyone with brain cancer.
Last update:4-13-98
INTRODUCTION: WHY I WROTE THIS GUIDE
I wrote this guide to give knowledge and hope to other brain tumor patients. The day after my first surgery on 3-20-96 at a county hospital in Los Angeles, I was surrounded by eight health professionals. They were telling me it looks bad, real bad, that I had a glioblastoma multiforme brain tumor, grade 4. So I asked the main doctor "If 250,000 people had this tumor in the same exact way that I do, how many do you think would be alive in 3 years?" Since he felt my 5 x 5.5 cm tumor was inoperable, his answer was "maaaybe one." Later, I asked my chemotherapist the same question, he answered "zero, but I've seen miracles before." I was bluntly told there's no hope for glioblastoma patients and that searching the internet or anywhere else for a cure would be pointless since nothing that they knew of would do anything but keep me alive a few extra months. I was devastated and felt completely hopeless.
I revealed this information to my internet guru friend Andy Frew. Andy quickly started to research the internet and while I was still in the hospital bed, he would bring in folders filled with information about my treatment options and what to expect. Over the following months up until this time, Andy and I have fervently researched how to best survive a malignant brain tumor. We've done our research on the internet, at medical libraries, by interviewing all types of doctors and researchers, as well as learning from the experiences of many other patients and caregivers. The end result is this guide which I'm happy to share with others. It is what I would've liked to have had at the beginning of my journey.
1. CURRENTLY, THERE IS NO CURE
There are survivors, but so far it would be exceptionally rare for a doctor who claims to have a patient who has been completely cured of a malignant brain tumor. Hope is on the horizon for a cure, but our government and health institutions are moving at a painfully slow pace. The intent of nearly all current treatments is merely to extend a patient's life and to give a patient quality time. Many people believe that when a true cure comes along, it will be in the form of gene therapy or immunology (rebuilding the immune system). The United States is the world leader in the search for a cure, but other countries such as Canada, Germany and Japan are also searching.
2. DEFINING TUMORS
Tumors are an abnormal mass of tissue in which the cells grow and multiply in an uncontrolled manner. Our immune system recognizes these mutant cells and destroys them. It is a breakdown in our immune system which allows these abnormal cells to grow unchecked. Tumors attempt to grow in all persons, but it is the failure of one's immune system which allows mutant cells to grow and a tumor to form. There is no way to prevent tumors, because researchers don't know what causes them to arise.
Primary tumors are those originating in the brain. Metastatic (or secondary) tumors originated somewhere else in the body and then metastasized to the brain causing a tumor to occur. Breast cancer and melanoma seem to be the most common types of cancer which metastasize into a brain tumor.
Tumors are described as either benign or malignant (cancerous). Approximately 60% of brain tumors diagnosed are malignant. Tumors are graded on a scale of 1 to 4. Pathology reports determine the grade.
3. NATURE OF MALIGNANT TUMORS
No one knows how long the tumor was in your head before the doctors diagnosed it. It is believed all grade 4 tumors (gbm) started out as a lower grade and 'transformed' to the final stage. Gbm's are generally referred to as rapidly growing, but some people may experience no growth for several months. Once surgery is complete, hopefully doctors will have cut out the bulk of the tumor. But for gbm tumors, there is no way doctors can see the microscopic tentacles (fingers) of the tumor. These octopus-like tentacles grow like roots of a plant in the healthy part of the brain. So even if doctors say they surgically removed 100% of a gbm tumor, they are only referring to the visible part. In every case I've ever heard of, the tumor always comes back, and in nearly every case it grows back in the same cavity where it was surgically removed. The reason that this occurs is because it only takes a few microscopic cells from the tentacles to allow for a regrowth. It is somewhat rare to have multiple tumors, but luckily it is very rare for the cancer to spread to other parts of the body from the brain.
4. WHO GETS A BRAIN TUMOR?
Each year, over 40,000 Americans are diagnosed with a primary brain tumor -- and for an unknown reason, the incidence rate is on the rise. In the U.S. there are about 12,000 people living today with a gbm, with an estimate of 6,500 new cases a year. For all types of brain tumors including those which metastasized from another parts of the body, there are over 100,000 cases each year in just the U.S. alone These are only our best estimates since there are currently no precise brain tumor statistics due to a poor system of record keeping by hospitals. The most common age of someone with a brain tumor is the group from 55-65, but all age groups are affected. Especially disturbing is the number of children who have to suffer. Over 2,200 children in the U.S. were diagnosed with a brain tumor in 1995, of which only 60% are expected to survive into adulthood.
In general, tumors arise from an unknown origin and they are considered unlikely to be hereditary. There are dozens of cases where tumors occur in family lines, but this is more of the exception than of the rule since the vast majority of patients have no family history of brain cancer. Malignant tumors occur in males more than females and in a higher percent per capita in Caucasians than blacks, Asians or any other race. The reason for this is also unknown. Overall, it appears largely to be a matter of luck more than anything else of who gets a tumor. Perhaps the best line of reasoning is stated by neurosurgeon Dr. Robert Fink "I believe that virtually all malignant tumors are different. Some may have dietary relationships; others may be due to pollutants, some come from viruses, others are genetic..."
5. NOTABLE NAMES OF BRAIN TUMOR SURVIVORS/VICTIMS
Liz Taylor (actress, surviving a benign meningioma), Pete Rozelle (founder of the NFL, died of a brain tumor), Lee Atwater (politician under Reagan's term, collapsed at the podium due to his tumor), Bob Marley (reggae singer, died of brain cancer at age 36 in 1981), CNBC Journalist Charles Grodin's first wife died of gbm, Judd Rose (journalist for ABC's Prime Time Live, is surviving a grade 2 glioma tumor). House of Representative member Frank Tejeda died of a brain tumor, Pat Paulsen (former Smothers Brothers sidekick, died of brain cancer in 1997). Dawn Steele (head of Columbia Pictures, "most powerful woman in Hollywood"), died after a 2 year fight with a brain tumor in 1977, Dan Quisenberry, a well known pitcher for the Kansas city Royals was diagnosed with a gbm in late 97 and had 80-90% resected. In early 1998, Fritz Von Erich of WWF wrestling fame, died of a brain tumor. Going far back, George Gershwin ("the greatest composer who ever lived") died in 1937 of a brain tumor. Senator Strom Thurmond's first wife died of a brain tumor in 1960. Frances Truffaut (famous French movie director) died in 1984 of a brain tumor, Gerry Pencer (founder and CEO of Cott Corp., the 4th largest beverage company in the world) died in early 1998 of a gbm tumor.
6. LIFE EXPECTANCY
In the U.S., approximately 13,000 people die every year from a brain tumor, about half are gbm. Other countries of the world (e.g. Canada) appear to have similar statistics (in relation to population). For newly diagnosed gbm patients, doctors usually inform them that they have 12 months (or less) to live. A common estimate is that 60% die in the first year, 90% die by the second year and only a few individuals make it past 3 years. Unofficially, I've witnessed these statistics are quite accurate. With such grim statistics, patients and caregivers often celebrate living just one year past diagnosis.
Grade 3 patients have a better prognosis than those with grade 4, but eventually, they too are faced with an utterly incurable disease. One estimate is that 20% of grade 3 patients survive 5 years or more. Often, biopsies and pathology reports are misleading. Many tumors which reveal a grade at one section will reveal a different grade tumor at another section. To identify these mixed grade tumors multiple biopsy samples need to be taken. When a mixed grade occurs doctors will usually treat the tumor as if it were all the higher grade.
There are a few factors which any brain tumor patient can have which will help their survival time. 1) The younger the better. It seems the body can handle more treatment and medications at a younger age; also the immune system may be somewhat more repairable. 2) Percent resected during surgery. Some doctors believe a near 100% resection is essential for longer term patient survival. 3) Tumor location is important. Luck is the factor here. 4) The patient's current condition is always crucial. 5) A strong positive attitude for unknown reasons seems to greatly help many patients.
7. LONG TERM SURVIVORS
Long term survivors (over 3 years) do exist and doctors all too often unfairly give their patients the feeling of having no hope. It is true that the three year mark is rare for the more aggressively malignant tumors,, but there are several individuals who have passed this mark and still have a high quality of life. Through the internet, I have met several individuals who long outlived their doctor's prognosis: Rev. Tim. H. of Texas, has lived with his gbm (w/a possible mix of oligodendroglioma) since 12/86; Peter D. is going strong w/gbm since 4/94; Matthew F., gbm 9/87 (w/ a possible mix of AAIII) ; Rebecca L., Author of "That's Unacceptable" has lived with gbm since 9/93; P.Curtis of British Columbia has had gbm since 12/91. Bob B. in Santa Monica has had gbm( w/ a possible mix of AAIII) since 12/86, Ed N. from Santa Monica is going strong with AAIII since 11/93. Of course each of those diagnosed would need to be verified for complete accuracy, but long term survivors do exist. Unfortunately, there just doesn't seem to be a secret treatment or cure that all of these people experienced. It simply appears to be primarily a matter of luck combined with a strong will. Another common thread among survivors is that they sought aggressive treatment beyond the standard surgery - radiation -chemotherapy.
It is very common for brain tumor patients to outlive the prognosis given by a doctor. Personally, I was told by my surgeon in January of 1997 that I would not make it to the end of the year. However, when 1988 rolled around I was not only surviving but thriving. One needs to realize a survival prognosis is usually based on statistics and not on a particular patient's condition, treatment strategy, attitude and faith. There is hope for everyone that they may become a long term survivor.
8. STANDARD TREATMENTS
Surgery, radiation and chemotherapy are the three standard forms of treatment. It doesn't matter if you're a billionaire, this is the path of treatment for everyone. Unfortunately, surgery only buys you more time before regrowth occurs. Radiation and chemo are also just an attempt to stunt the tumor's growth -- usually with only moderate and temporary success.
9. WHAT IS SURGERY LIKE?
In order for someone with a malignant tumor to survive, it is imperative that doctors first of all surgically remove the bulk of the unwanted intruder. In this procedure, you have to trust a couple of human beings to open up your skull and cut a tumor out of your brain which is hard to see and to get at. After the first surgery they sealed me up with about 65 staples, the second time I got the standard stitches but since my cerebral spinal fluid (csf) leaked and became infected using the stitches, surgeons went back to using staples for my 3rd surgery. They used the same scar and door in my skull for all three surgeries. From the time you are put under until the time you wake up seems like 30 seconds. Upon awakening from surgery, my first thoughts were, 'Am I still me? How is my memory? Do I have any deficits?' Doctors say there is perhaps a 5-10% chance of a patient getting deficits, but of course this risk will vary from patient to patient. Don't expect to be perfectly normal, most seem to have at least a few minor changes after surgery. But many of those with deficits will often quickly recover to 100% in a short while.
If you are lucky your surgeon will have an ideal tool -- the ISG wand. This is a 3D computerized version of an MRI that helps the surgeon to precisely find the borders of the tumor during surgery.
The MR Scanner, it is also used by some surgeons during surgery to help locate the exact position of the tumor. Sometimes a surgeon will perform an 'awake' surgery. Although this technique is potentially very frightening. Patients normally report the procedure is painless. Awake surgeries occur when a surgeon deems it is the safest way to avoid harming healthy brain tissue.
10. HOW MANY SURGERIES CAN ONE HAVE?
Common sense says that before a patient is nearly dead, doctors should keep performing debulking surgeries (resections). But some doctors won't do this because from their perspective you'll be dead soon enough. In addition, multiple surgeries are expensive and ghastly damaging to your quality of life anyhow. It is common for patients to have 2 or 3 debulking surgeries, but more than that is rare.
11. QUESTIONS TO ASK AFTER SURGERY
12. GETTING A SECOND OPINION
Listen carefully to your doctors and go with their program as long as you believe in their plan. However, regardless of your situation, it would be wise to get a second opinion. To do this you will need to get copies of your MRI's, CT scans, pathology reports and all of your medical records you can get a hold of. The average person will complete the 60 grays of radiation and then consider the chemo options and weigh them out. But one should especially keep an eye and ear out right away for clinical trials. The standard stuff isn't working for anyone, it just gives you a little more time to live a quality life. To really take a stab at the tumor, try to get special treatment at a clinical trial of some sort. Often, trials utilize special radiation techniques so you therefore must be quick in assimilating your information and making a decision. Continually educate yourself, you are your best advocate. Don't ever let a doctor just 'write you off', keep looking for other treatments that your doctor does not do or know about. Research is your key.
13. OBTAINING YOUR MEDICAL RECORDS
You will definitely want to obtain a copy of your medical records. These records will be necessary for a second opinion or if you are trying to qualify for a clinical trial. Your medical records will consist of 1) your medical paperwork, 2) your pathology report and 3) your MRI and CT scans. Scans from an angiogram or P.E.T. might also be helpful. Often, your scan will quickly retell your story and current situation. It can also be a good idea to have a duplicate MRI or CT scan at your bedside if you ever return to the hospital. Occasionally, you are invited to send your documents and scans to a doctor for evaluation. Some doctors charge roughly $300 for this second opinion by mail. If you ever do this, make sure to have an arrangement to get your scans back (keep a photocopy of your paperwork). Hospitals may want to charge you about $9 per page for your scans. The trick in getting a free copy is to tell them you want to personally deliver them to a specific doctor for a second opinion. The rule generally is they will give you free copies which you can pick up. Make sure to obtain your pathology report as well. Keeping track of your medical history (e.g. medications used) will also help in obtaining accurate second opinions. Doctors will love to see that you've got your act together.
14. MRI'S AND CT SCANS
MRI's are ideally/typically given every 2-3 months, although it depends on your doctors, hospital, and if you are actively in treatment. Usually, if a doctor requests longer intervals between MRI's, that is an indication the doctor is confident the tumor is somewhat stable in its growth. MRI's are the most detailed image that doctors will take of your tumor. Often, you are intravenously given a contrasting agent such as gadolinium and then the radiologist makes a second more detailed series of MRI images. CT (cat) scans are a more general x-ray of the brain. Tumors show up as white blotches on both of these scans.
The problem is there are additional white blotches on the scan which is either body fat, water, edema or unidentifiable artifacts. A T1 type of MRI will show the body fat as looking like tumor stuff. Often on a T1 MRI you will see a thin white layer of fat which surrounds the entire skull. a T2 type of MRI will show excess fluids looking like tumor (water, edema). A radiologist specializes in reading these images. If a patient is experiencing a deficit, it is important to distinguish whether the brain is being affected by an infiltrating tumor or by fluid, or even necrosis. The ultimate question which everyone is anxious to find out is "Where exactly is the tumor and is it growing?" The only way to answer this question is to compare MRI images over several months to see if anything is growing or shrinking.
14.5 PET AND SPECT SCANS
If you want to identify the size and location of a tumor, a MRI or CT scan is sufficient, but if you want to distinguish living from dead tumor tissue then a PET or SPECT scan would be necessary. Doctors will often order a PET scan when they desire to distinguish dead tumor tissue (necrosis) from living/growing tumor. This information if helpful in determining if remaining tumor on the scans are showing living or dead tumor tissue. The reason a PET scan is not ordered on a regular basis is probably due to it being a very expensive procedure.
PET scans (Positron Emission Tomography) and SPECT scans (Single Photon Emission Computerized Tomography) are in the same category of tests. Each uses a computer to generate a colorized image of the functioning of the brain. This is achieved by detecting the presence of a radiating particles inside the patient with the assistance of a form of glucose.
"The PET scan can help determine the rate of glucose consumption. A rapidly growing tumor will consume a lot of glucose and will give a strong PET signal. A slow growing tumor will consume approximately the same amount of glucose as the surrounding normal tissue and will go undetected by the PET scan. Necrotic (dead cells) will consume no glucose (they're dead after all!) and will show up on the PET scan as a dark spot. This information is useful to help understand the shapes seen in the MRI and CT." (Dr. Loren Buhle).
Just as the MRI is a more advanced and effective test than the CAT scan , the PET is more advanced and effective than the SPECT. SPECT only measures a very small signal, therefore the image quality is poor. In one sense SPECT could be considered is a poor man's version on the PET. Given a choice, go with PET. Either way, consider yourself lucky to be getting monitored beyond the standard CT and MRI scans.
15. DILANTIN AND DECADRON
Nearly everyone gets this double shot of medications at the beginning of their journey. Dilantin is given in tablets of 100 mg for seizure control. Even if you have never had a seizure, it is standard issue to give you at least 200 mg a day. If you have seizures, 600 mg a day seems about average, but dosages will depend on the tolerance of an individual to the medication. Often, dilantin is prescribed for the rest of your life. If you are having side effects with Dilantin, ask your doctor to switch you to a different anti-seizure medication such as Tegretol. Rashes can be a serious problem and should be looked into. Often, a blood test to check for dilantin levels is taken, with normal levels being between 10-20.
Decadron (dexamethasone) is an immensely powerful steroid which comes in tiny tablets. It relieves pressure on the brain by reducing swelling. It is very effective and is frequently used to relieve a patient of headaches caused by excess fluid in the brain -- which in turn will also reduce the possibility of having a seizure. Never go quickly off a decadron dosage as the body needs to slowly taper off. Usually, doctors will give your body 2 weeks or more to slowly get off this drug. Side effects are a big, big, problem with decadron and dilantin. Expect sleep problems, usually decadron keeps you wired up like caffeine does. Expect a 10-25% weight gain due to decadron. No matter how much you eat, you're still hungry and your body retains the weight quite readily. There are many more minor side effects of these drugs (such as weakness, rashes, etc.). It's a small victory when you get off of them, especially decadron. Often, Cimetidine (Tagament) is prescribed with decadron to prevent potential ulcer problems.
16. WHAT IS RADIATION LIKE?
From a doctor's point of view, the hope of radiation is it will double your life expectancy. So if you were going to die in 6 months, now hopefully, you will live for at least one year. Most commonly, patients undergo external beam radiation for 33 treatments over a 7 week period. The treatment itself lasts about 10 minutes. One Gray is equal to 100 rads. A typical course of treatment might be 6,000 rads which can also be expressed as 60 Gray (or 60 Gy). Just one fraction (daily treatment) of which might typically be 180 rads or 1.8 Gray. Therefore the typical course of 33 treatments at 180 rads equals a total of 59.4 gray. The total of 60 Gray is normally the lifetime limit that doctors are able to give their patients. Additional radiation would be similar to multiple surgeries -- our brain can only take so much. The radiology people strap you down on your back and you get a customized helmet to wear over your head for each treatment. This helmet assures them they are radiating the same exact areas each time. Often they shoot the radiation beam in three directions through the skull and at the tumor. They typically overshoot the bulk of the tumor by 2 or even 3 cm in hope of radiating some of the infiltrating tentacles.
Standard radiation is done using a linear accelerator which is often referred to as "external beam radiation".
A custom-molded helmet is used to precisely radiate the same area during each of the treatments. Radiation treatment is in no way painful or traumatic, but there is a fear that you may suffer a slight deficit in cognitive thinking. Each patient is different, but the average person seems to tolerate radiation with no side effects except hair loss and fatigue. Nearly everyone goes bald in the areas which are constantly radiated. Usually the hair grows back in 2-5 months. Often, it is thinner and of a different texture than your original hair. In rare cases, hair never grows back in the areas radiated. Expect to be sleepy, very sleepy for a couple of months. Once a person reportedly slept 20 hours a day. But 8 hours of beauty sleep is not enough during this time. 'Necrosis' is the term used to describe dead tissue of the tumor and even some brain. If radiation is successful, necrosis will exist within the tumor area. Unfortunately, the brain has no natural system to drain this debris. With time your head will be cleared of this dead tissue, but sometimes the buildup of necrosis is so great that it is necessary for doctors to perform a surgery to remove some of the dead tissue.
17. STEREOTACTIC RADIOSURGERY (a.k.a., Gamma Knife)
Gamma knife is bloodless surgery since it is surgery without using a scalpel. It is frequently used to treat small tumors and those which are difficult to surgically resect. In this 'space age' type of radiation treatment, the patient is laid down on a bed somewhat similar to a cat scan bed, then a device which looks similar to an old fashioned hair dryer is carefully placed over the patient's head. 201 finely focused beams of gamma radiation then radiate at the tumor. The beams of radiation are very weak until they meet at the target and then collectively they kill the DNA in the tumor cells. Well over 70,000 patients have had Gamma Knife surgery, with patients usually reporting positive results. It is an expensive piece of equipment and those allowed to utilize this procedure should consider themselves lucky.
A problem is that gamma knife is only used on smaller tumors, usually 4 cm or less. At this size, Gamma Knife can pinpoint the tumor and then zap it most effectively without harming healthy brain tissue. One should approach their doctor and ask them if this treatment would ever be a possibility. Info for the San diego gamma knife facility can be found at; www.sdgkc.com and http://sd-neurosurgeon.com/index.htm
18. WHAT IS CHEMOTHERAPY LIKE?
Chemotherapy is chemical therapy. Many patients and doctors will be reluctant to use chemotherapy because they fear the side effects will be awful. True, side effects such as hair loss and nausea do sometimes occur, however, chemotherapy drugs used today are improving from times past and side effects in general are not nearly as bad as they used to be. The hope of chemotherapy is similar to radiation, it is merely to extend your life but to not serve as a 'cure'. Tumor cells are different from ordinary brain cells in that they divide at a doubling rate (a process called mitosis). Chemotherapy and radiation are directed towards destroying these newly forming cells. You can take a chemo drug orally, in an IV (intravenously), or intra-arterially. The most common treatment up to date has been BCNU (carmustine) taken intravenously. This is not going to kill off the tumor and its tentacles, it will only stunt its new growth for a short time. Side effects with intravenously taken chemo drugs are high because the poison is running through the bloodstream. Therefore, side effects such as hair loss, sickness, etc., are common. There are few chemo drugs taken orally which can kill brain tumors.
19. COMPLETE BLOOD COUNTS
When undergoing chemotherapy and even during radiation, you will be required to get your blood drawn about once a week for a CBC (complete blood count). Doctors want to see if your system is operating within the normal limits. For my 6 intra-arterial carboplatin treatments at UCLA, doctors required my white blood cell levels to be a 3.5 or higher, neutrafils at 1.5 or higher, hemoglobin at 12.9 or higher, and platelets at 100 or higher. Patients often need to get their levels up to a normal range so a treatment can be safely continued. In extreme cases, blood transfusions may be utilized. If a patient gets an infection or sickness of any type, the chemo treatment is usually canceled until the body heals itself. This is usually because the chemo is damaging to the immune system allowing for the illness to escalate.
19.2 CHEMOSENSITIVITY TESTING
Chemosensitivity testing involves testing different chemo drugs on samples of a patient's tumor. You should consider this option if you are already going to be undergoing a surgery since you will need samples of your tumor sent to a laboratory for testing. . A drawback is the procedure is it is somewhat expensive and it is not 100% accurate. However, it is helpful in trying to choose between several drugs. For example, when I underwent a clinical trial for CPT-11, I had a chemosensitivity test referred to as a " drug resistance assay", the results showed CPT-11 as somewhat effective on stopping the growth of my tumor cells but also effective were VP-16, thalidomide and carboplatin. . Alternately, the most common chemo drug, BCNU, had a very poor effect on stopping growth of my tumor cells. This type of testing is rather new for brain tumors and you will need to coordinate with your doctor about which institution to choose and which tests your tumor samples will undergo.
19.5 STEM CELL RESCUE
This procedure allows a very high dose of chemo to be given to allow maximum cell kill of a tumor. After a patient's own stem cells are given back to re-populate the bone marrow. It is very promising for malignant brain tumors.
20. TAMOXIFEN
Tamoxifen is a mild chemo treatment taken orally and has very few (if any) side effects. Reports have shown (primarily Couldwell in ND) that tamoxifen taken in high doses (200-240 mg a day) is successful in approximately 30% of patients in keeping their tumor to a very slow growth. This is due to the drug inhibiting the availability of protein kinase-C to the tumor cells. Glial cancers have an unusually high demand for this enzyme when they are in mitosis (splitting). The idea here is that the tumor will be starved of a certain protein which it needs to grow. A possible long term side effect of Tamoxifen is blood clots. Impotence may be a problem for males. There is also an increased risk of cervical cancer in pre-menopausal women. The pills look and taste similar to aspirin.
21. GLIADEL WAFERS
This treatment consists of effortlessly placing 7-8 dime-sized BCNU wafers directly into the tumor cavity after surgery. Over time, the wafers will slowly dissolve a high concentration of the BCNU directly in the tumor bed. The drug even attacks the tentacles which are a few centimeters away. The polymer coating in which the BCNU is encased also dissolves; Therefore, no clean up process is ever needed. It is expensive ($10,000) due to meticulous FDA requirements in manufacturing -- but the cost relation is alleged to be even cheaper than intravenous BCNU (yet without any side effects).
It is the first treatment approved by the FDA in 23 years for brain tumors. Guilford Pharmaceuticals manufactures the product. Rhone-Poulenc Roher Pharmaceuticals is marketing the product. (RPR is located at 500 Arcola Rd., P.O. Box 1200, Collegeville, PA 19426-0107). 610 454 8110 This treatment is only officially approved for recurrent gbm surgeries, but it will be up to private physicians to determine whether or not to use it for primary surgeries or even for AA3 patients. Extensive clinical trials indicated this treatment is effective and it will hopefully extend a patient's life by 3 months or more. Gliadel wafers are a painless, side-effect free chemotherapy. Patients getting the wafers should consider themselves fortunate. Future development with the wafer technique include higher concentrations of BCNU and the use of other chemo agents such as carboplatin.
For more info refer to: http://www.neurospine.com/gliadel.htm
22. RMP-7 AND INTRA-ARTERIAL CARBOPLATIN
A direct assault on your brain is to have a special procedure done called intra-arterial chemotherapy. What this entails is an hour long procedure where a tube is inserted in your hip and it is run through your artery right up to your brain. Special camera equipment allows the doctors to see where the tube is in the body. A special chemo agent called RMP-7 is then injected directly on the tumor area. The role of RMP-7 is simply to open up the blood brain barrier (bbb) which all people naturally have as a means the brain uses to protect itself from intrusions. After the bbb is open, then a chemo agent which kills newly forming tumor cells (such as Carboplatin) is also squirted from a catheter into the tumor area. There are few if any side effects from this method of delivering chemo since the poison is not running through the body. RMP-7 is supposed to allow 10 times as much chemo into the tumor area. In reality, it appears to have results somewhat similar to the use of carboplatin by itself.
23. CLINICAL TRIALS
Without a doubt, the best place to start looking for a clinical trial is Al Musella's web site "Clinical Trials And Noteworthy Treatments For Brain Tumors" located at http://www.virtualtrials.com
One should be forewarned these trials are often tricky to get into. First these places offering a trial want to make sure you are not on your last leg. They often go by a karnofsky rating system to see if you qualify. Often those with a rating of 60% or lower get rejected (each trial is different).
Karnofsky Performance Scale;
Also, it often depends on which treatments you've already had -- with less being better to increase your chances for acceptance into a program. Often, gbm's are the main focus of brain tumor clinical trials. This is due to these patients having very little hope of long term survival; therefore doctors keep trying new treatment methods. There are perhaps 150 brain tumor trials going on in the U.S. at any given time. Ultimately, gene therapy and immunology trials are hoping to find a cure, not just to better zap the tumor as do the chemotherapy and radiation trials. New trials are referred to as Phase I; their primary objective is to establish toxicity to see if there are any adverse side effects. If a Phase I trial has some success, this paves the way for Phase II and III trials. One consideration before entering a trial is if there is a "control arm" for those being treated. One may receive a placebo instead of the newly developed treatment so that the testers can get a more accurate finding.
24. FREE AIRFARE
To get a free flight to a clinical trial, try Corporate Angel Network 914-328-1313 or AirLife Lifeline 800-446-1231. It makes sense to give those empty seats on airplanes to a brain tumor patient in need of treatment. Try the following web sites for more information:
http://www.angelflightfla.org/aircareall.org/acahome.html
http://www.airlifeline.org/
http://xymox.palo-alto.ca.us/av/angelflight.html
Air Care Alliance in Manassas, VA operates the National Patient Air Transport Hotline (NPATH) which can help you arrange travel anywhere in the country. They act as a reference agent for over 50 volunteer pilot groups. They will refer you to groups in your general area for you to contact and arrange for your trip. Their number is 800-296-1217. They have arranged over 24,000 flights since their inception in 1990.
http://www.CorpAngelNetwork.org/
25. DEFICITS and DEATH
The problem with a growing tumor is that it invades healthy brain, causing many exceedingly discomforting side effects. Every patient has deficits, some minor, some earth shattering. Common deficits are headaches, seizures, memory loss, weakness to one side of the body, nausea, fatigue and vision problems. Before death, patients often seem to have multiple and very severe deficits such as not being able to walk, talk, communicate properly or eat. Sadly, what is happening here is the brain is being taking over and thus failing piece by piece like an old car. At that stage patients and caregivers often concede to the tumor and give up hope. Therefore, if death must take place, then so be it rather than suffer continuously.
26. OVERCOMING DEFICITS
Unfortunately, everyone who has a brain tumor will have deficits at one time or another. But while some deficits are difficult to overcome, it is good to know that most of the deficits patients have to deal with are only temporary. Take my previous deficits as an example; I had unbearably painful headaches over a 2 month period but they went away after surgery. I had severe double vision for about 8 weeks but then I completely recovered from it. During radiation my doctor gave me a 30% chance of going blind since they were radiating my optic nerve, but currently my eyesight is normal. I needed a cane to walk after my second surgery, but within two weeks I didn't need the cane anymore and after two months I was running and working out. I had hydrocephalus which caused a large bubble of fluid to form on the side of my head, but my body amazingly cured itself overnight after 6 weeks of suffering. I've completely recovered from previous short term memory problems (which was being caused by edema). I've also recovered from uncontrollable paranoia. I had a bald head from radiation, but 5 months later I needed a haircut. My decadron rash is gone, my dizzy spells are gone, my chronic fatigue problem is gone, etc, etc... The point is to not become hopelessly discouraged if you are experiencing deficits. Remember, you're in a war and you're bound to have a few battle wounds. I am very, very fortunate to say, "since my diagnosis with gbm, I have no lingering deficits other than a blind spot to my upper left side. Since I've endured 3 surgeries, radiation and 3 types of chemotherapy's, I thank God that I'm still alive and thriving. Currently, I feel as good now -- intellectually, emotionally and physically -- as anytime in my life.
27. CAREGIVERS
Taking care of a brain tumor patient is one of the hardest things anyone will ever do in this life. Often, caregivers suffer as much (if not more) than the one they are caring for. It is an especially helpless and painful feeling to watch someone suffer whose brain is increasingly being invaded. One of the problems caregivers face is having to make complicated life-saving decisions, yet having to deal with a sea of confusion when gathering information. For malignant tumors, sadly, there is sometimes no further treatment which can be done. Also adding to the caregivers woes are medical professionals who make mistakes and don't have completely satisfying answers. Many patients report they were misdiagnosed in the beginning of their ordeal. Insurance companies also can be extremely difficult to deal with. Another common problem is that the patient's personality might be adversely affected due to the location of the tumor (often times this is only temporary). The strain on family life is quite often unbearable. Nevertheless, caregivers are the lifeline of patients and should keep caring for their loved one despite so many pitfalls.
28. SUPPORT GROUPS
Support groups are a tremendous help for both patients and caregivers. One great aspect of support groups is that brain tumor survivors often quickly bond together simply because they have been through the same hazards on their perilous journey. It can also be quite fun trading war stories and to know that you are not alone. Getting to know fellow brain tumor patients locally might also help you find local doctors or facilities which may help to meet your special needs. Contact one of the brain tumor organizations to try and find out where a support group meets in your area. Local hospitals may also have some information.
If you are connected to the internet, you may want to join The Brain Tumor E-Mail Discussion Group. This group is comprised of hundreds of patients and caregivers along with a few health professionals. It works in this way -- you would e-mail your medically-related question(s) to the entire group. Within minutes, hundreds of people will receive your message. It very common to receive several helpful replies from others. Some replies are sent to the whole group, others are sent directly to you. This discussion group is very active, expect to receive 50+ messages a day. Simply delete messages you are not interested in reading. For many subscribers, it serves as an irreplaceable support group. To join this list -- simply send an e-mail to listserv@mitvma.mit.edu, leave the subject blank and simply put 'subscribe braintmr yourfullname' in the body of the message. For example -- subscribe braintmr Jane Doe. You should start receiving messages within a few hours. Read the Administrative Hints e-mail for how to best use this free service. When you send messages to the list for everyone to read, make sure you use the address braintmr@mitvma.mit.edu
If you decide to quit the list simply send an e-mail to listserv@mitvma.mit.edu, leave the subject blank and simply write 'signoff braintmr' in the body of the message.
29. POSITIVE THINKING
We must all hang in there for the miracle cure and our moment of redemption. Positive thinking is a proven medical remedy for curing sickness, even cancer. Our body's immune system is boosted by our attitude. Laughter is the best medicine might be more than just a cliché. Many people conversely feel that stress can cause your immune system and the rest of your body to function improperly.
30. DIET
Do not underestimate the power of good nutritious food in the body. Do not underestimate mother nature. The reason this tumor exists is the body's immune system is failing by letting mutant cells grow. What better way to help fight these mutant cells than to help your body operate naturally? Vegetables, fruits, grains, and vitamins all help rebuild your body to the lean mean fighting machine it is supposed to be. Oils, fats, excess meat, chemicals, sugars, etc. all work against your system. Carrots, broccoli, garlic, wheat grass, red grapes and even wines are reported to battle cancer. A good diet is simple: eat a wide variety of natural unprocessed food such as unfrozen, uncooked fruits, vegetables, and grains. Drink plenty of water. Especially stay away from aspartame, caffeine, fast food and all other unnatural man-made products. Exercise completes the cycle of naturalistic healing.
31. THE QUESTION OF ASPARTAME
Early in 1997, a couple of consumer groups reported that aspartame (NutraSweet) sometimes would cause brain tumors in laboratory rats. They also pointed out a suspicious coincidence matching the introduction of NutraSweet to a rise in malignant tumors. NutraSweet makers fervently deny any relation and point out that it is the most thoroughly tested substance by the FDA. So it seems still a mystery if this product can cause tumors. However, as a preventive measure, common sense dictates that one should stay away from this man-made chemical compound.
32. ALTERNATIVE TREATMENTS
There currently is no alternative treatment which a large group of patients will advocate. However, many individuals do undergo some form of alternative treatment or combination thereof. The 1996 Time magazine's man of the year was the inventor of a "cocktail" chemotherapy for AIDS patients. This mixture of several chemo drugs is effectively helping prolong the lives of AIDS patients. Likewise, brain tumor patients often hope to create their own mixtures of treatments which will be effective. Al Musella's site at http://www.virtualtrials.com is an attempt to monitor the success of all the alternative treatments. Some patients take shark cartilage (which suppresses the tumor's blood vessels). Some patients take Essiac Tea (an herbal tea from Canada that would hopefully cure any type of cancer). There is wheat grass, various vitamins and herbal remedies designed to boost the body's immune system. There is boswellia serrata (from the incense tree), green tea, visualization, etc. Your humble narrator takes 220 mg of tamoxifen a day, hypericin pills from the St. Johns Wort plant, cat's claw from Peru for immune support, many vitamins, exercise, 6 rounds of intra-arterial carboplatin and a naturalistic diet involving fruits and vegetables. But for me, the most important of all is prayer and faith. Each patient must try what they think is best for them. Some doctors recommend when doing chemo to stay off some of these alternative treatments (such as Essiac Tea) as they may affect the chemo.
33. DR. BURZYNSKI
Dr. Burzynski offers a chemo drug called antineoplastons (made from urine of all things) which is intravenously administered at his Houston clinic. Over the years, the clinic has brought in countless millions from patients who have had to pay $72,000+ a year (cash) for this drug. A great controversy started years back when the FDA told Dr. Burzynski to get the standard clearance before treating patients. Dr. Burzynski scoffed at and ignored the FDA and has therefore been perpetually at odds with them. One problem is that Dr. Burzynski claims the antineoplastons cures everything from brain tumors to AIDS, yet he doesn't have any objective evidence to prove his claims. Although many of his patients and caregivers often emphatically swear that it works, it is rare for any doctor or researcher to speak positively about the true effectiveness of antineoplastons. Personally, I will advise one to not bother with this chemo treatment, but not because it is controversial or too expensive, but because it doesn't seem to work any better than the current chemo treatments offered at hospitals (e.g., BCNU, PCV, Carboplatin, Cisplatin). In fact, there are several people who have died while under his care whereas a different treatment may have been more effective. Tragically, antineoplastons could be a somewhat effective chemo drug, but since Dr. Burzynski has the patented formula and wants untold millions before he will share it with others, it won't be modified, maximized and made available to the average person.
33.5 THE BEST DOCTORS
One of the first thoughts that goes though someones mind when dealing with a brain tumor is they want the best treatment by the best doctors. However, it's difficult to locate the best treatment since it seems to continually change and evolve as time goes on. Perhaps the best method of monitoring which doctors, trials and treatments seem to be working the best would be to surf the internet and keep a keen ear out for what shows the most promise at that current time. The term "best doctors" does not dictate who is actually the best, but it merely refers to those who are the most popular or well known doctors. Usually, it's the name of an institution, the tools used and treatments offered that helps promote a doctor to a "best doctor" status, as opposed to simply relying on skill and judgment of the doctor. For a list of many of these popular doctors in the U.S. go to http://www.virtualtrials.com/btlinks/doctors.html
34. PAIN MEDICATIONS
Headaches caused by excess swelling is usually the most serious pain which patients endure. Decadron will reduce this pain, especially in doses of 16 mg a day or more. In the hospital decadron is sometimes given intravenously. Tylenol 3 (codeine) is a mildly effective pain reliever, while Vicodin is used if the pain is more severe. Vicodin is considered a narcotic so doctors are reluctant to let patients use it for a long period of time. In the hospital, morphine is the strongest pain reliever available. In extreme cases a morphine pump is inserted into the patient and a constant flow of the drug is readily available. Usually a port is inserted somewhere in the chest area for easy access. For nausea caused by chemo, Zofran is a commonly prescribed drug which has had great success.
35. GENE THERAPY
Gene therapy involves the manipulation of our genes and of rebuilding our failed immune system. There are some health professionals who believe a cure will be found by further research with the P53 gene. This gene is classified as a tumor-suppresser gene since it destroys cancer cells throughout the body. Amazingly, nearly half of all cancers detected throughout the body are in some way deficient of this P53 gene. A large percentage of patients with malignant tumors also have this gene functioning improperly. Another tumor suppresser gene has also received some widespread attention. This gene is called the P10 and it too is deficient in many patients with malignant tumors. Researchers believe with more time and money, they will be able to find a way to reactivate and revitalize these gene (and many others) so that they will perform the body's natural function of fighting and destroying newly created tumor cells. An informative web site on gene therapy with emphasis on the P53 gene is at http://www.bogler.net/lab/welcome.htm
36. CONTACTS FOR MORE INFORMATION, WEB SITES
A few of the many places to obtain more information can be found at;
Jim Kenzig's: The definitive bt links site; http://www.virtualtrials.com/btlinks/
37. THE GOOD SIDE TO HAVING A BRAIN TUMOR
You wake up to life. You appreciate everything about life, but especially family and friends. You become very humble very fast, which is timely since the feeling that there is a God watching over us suddenly becomes very, very real. You are without a doubt going to face the toughest battle anyone on earth has ever faced. Keep your chin up and come out swinging, people will acknowledge your spirit, your courage, strength and stamina. The purpose of this life may in fact be 1) to experience life, 2) to learn our hard lessons about the battles between good and evil, and 3) to forever learn to have faith, trust and believe in our God.
Good luck and God bless to everyone!
Steve DePesa (first symptoms 8/95, hemorrhage/ misdiagnosis 1/96, biopsy/surgery/diagnosis of a glioblastoma brain tumor 3/96, debulking surgery 8/96, recurrent gbm surgery 10/97. 1/23/98 MRI looked great, my oncologist at UCLA said with a smile "the [remaining] tumor is shrinking." © 1998 -- You are free to print this guide and give to others as long as there are no charges involved.
sdepesa@earthlink.net
http://home.earthlink.net/~sdepesa/ (for updates)