Living with Brain Cancer

It is April 2007 and I am alive and well after nearly 11 years. Below are some facts and thoughts that may be helpful and interesting to those of you struggling with the disease of a brain tumor.

The Diagnosis and First Steps - I was diagnosed with a GBM IV in July of 1996. After a month of excruciating headaches, I fell over one morning; family called an ambulance, and then was life-flighted to a larger hospital where I had emergency surgery July 3 to remove a baseball-sized tumor. The surgery was extremely successful. After a crash-course on malignant brain tumors, we realized we had no time to wait. We saw a regular medical oncologist as referred by the surgeon He gave us little hope and only offered a clinical trial using chemotherapies that had not really shown much success in treating GBM - plus, and it was a ‘randomized trial’ which meant that a computer would randomly pick who would actually get the drug - an important method for research, but not one I was interested in for my care. He then did the very best thing he could have, which was to tell me I needed to see a NEURO-oncolologist - some one who specialized in heads. We contacted a specialist but were not satisfied with their responsiveness.

I searched on the Internet and found an amazing website that listed all clinical trials for brain tumors in the whole country. I printed out a list and began cold-calling contact persons for various clinical (experimental) trials across the nation. I also made an important decision - I figured that if there really were no cure, it was more important to find the right PEOPLE than the right DRUG - first of all because I’m not a neurologist who can understand them all and more importantly because drugs will come and go, work and fail, but the right people will stick by your side through it all.

I was lucky - My third call was to the brain tumor center at a university-based medical center. A doctor returned the call - at 10:30PM! He said “david, you’re too young to die (30) come down, page me, and I’ll see you immediately”. We collected my scans, microscopic slides, and embedded paraffin slabs from the biopsy and drove to the university the next day. Though the doctor (Henry) is in research and conducts so many trials, if a patient is not responding positively to an experimental treatment, he pulls them off of that trial and tries something else. There was a lot of comfort in knowing he had a whole arsenal and was willing to use it- The patient’s treatment is much more important to him than the research results. With trust came a huge sense of relief - Because of that trust, we didn’t feel a need to spend hours seeking other opinions or therapies from around the country - because of that trust, we found an ability to face the facts, leave the medical calls to the team and move on to tackle the intellectual, emotional, and spiritual needs. We never looked back!

The Treatments - My scans showed a lentil-sized piece of tumor that remained — By Thursday of that week we were coming home with the first round of pills for a new promising chemotherapy trial called Temozolomide (Trade name, Temodar). I took the pills every night for five nights, then had three weeks off, I had some initial difficulty with nausea and fatigue, but nothing that medications and naps couldn’t handle. Though it’s not a 100% effective-magic drug, it worked for me - After just one month, the tumor was gone! I took three more rounds of the Temozolomide to complete the trial and continue fighting any invisible cancer cells.

I was about to start the important 3-D planning for conformed field external beam radiation when they discovered a second, old, low-grade tumor which was surgically removed. At Thanksgiving of 1996 I had a second craniotomy to remove a second 5 cm tumor and to have a port installed into the tumor bed. Just before Christmas I began six weeks of radiation. In March of 1997 my scans were still clear - but Henry and I have both been believers in not standing by and waiting for a re-growth - so when we were winning, we treated. Henry then suggested that I have the monoclonal antibody procedure done, for which the port had been installed. Simply put, Monoclonal antibodies are radioactive mouse antibodies, which are injected through the port straight to the tumor cavity. The object is that the isotopes find the cancer cells and destroy them with their radioactivity. I was in isolation for seven days while radioactive - It sounds spooky, but it was painless. [Since I took this treatment, they have managed to decrease the length of stay by using antibodies with a shorter half-life.]

Then in August ‘97, my MRI scan began to show some enhancement. I started another chemo called CCNU, which was taken by pill in one dose per six weeks. The CCNU did cause my platelet count to drop considerably, but not enough to require a transfusion. I took vitamin B-12 to boost bone marrow production and that seemed to help. I found anti-nausea medication a MUST on dosage day. In October, the enhancement was more pronounced. Doctors tried a PET (or SPECT) scan to try to determine whether it was live tumor or necrosis (dead tissue caused by radiation). However, the PET scan was inconclusive- and had been proven incorrect in numerous cases over the past several months.) I did one more cycle of the CCNU but in December the “enhancement” seemed to have actually thickened. So in January 98, a second biopsy proved it to be necrosis.

Following the good-news biopsy, I still went back to the course of treatments, hammering away at whatever might still be there. I did two cycles of VP-16, an oral drug taken daily for 21 days, off 7 days. My blood counts were fine throughout the VP-16 and with anti-nausea medication, managed some discomfort. Next, I took Tamoxifen for many months - a hormone therapy generally used in treating breast cancer but has shown promise in the treatment of brain tumors - no effect on blood counts and no nausea.

The Annoying & The Important Stuff - The scans continued to be clean, but I started having some trouble with seizures in 1998 - my daily 300 mg of Dilantin was no longer doing the job - we tried upping the dose, then we tried adding Neurotin, but neither worked and left me terrifically groggy. - Finally, we tried adding Lamictal, a relatively newer anti-seizure drug on the market. It’s been doing the job- I take everything at once before I go to bed. I also take Vitamins A, B, C, and E, as well as Essiac Tea. And have done so since day one. Has it helped fight the tumor? I’m not sure, but I haven’t had a cold in over 3 years, and I used to get them all the time when I was a healthy person.

In late 1998, we noticed a loss of peripheral vision on my left side - but in both eyes, so the field cut I pretty dramatic. I tried ‘prism’ glasses to help correct, but didn’t find them effective, so I just learned to be more careful looking around (!) In January 2000 I did a 3-hour euro-psych test to get a baseline reading on various cognitive tasks. - Final report said I still think fine, but was perhaps a bit slow when changing topics - but some will say I’ve always been that way….

So I’ve lost all left peripheral vision, have some balance issues, tire quickly, and still have the occasional seizure but these are really, in the end, just annoying things - Life goes on and I’m still here to be a part of it. I’m on a 6-month checkup cycle and on July 4, 2006 celebrated 10 years of surviving the beast.

Treating a brain tumor is a complex thing- unlike a broken bone, you can’t just treat the physical ailment - the tumor attacks who you are, and thus your intellect, feelings, and spirit area all threatened and must be cared for - and it’s too much for one person to do it all, especially when you’re fighting hard physically.

I found three things that put my life back into balance. Faith - For me, faith in a God who loves me and would stick it out with me no matter what, a faith I had started to lose over the years - the foundation of the house of my life. Family & Friends - the walls of my life behind which I could find shelter from the winds, and could lean upon when weary. Future - the new windows and doors of my life that showed me the possible, and gave me the chance to start believing in dreaming. I think we all have a dream for a reason and I think we all have the time we need to make it happen. In some ways, we are the lucky ones because we are given a chance to really understand how precious is the gift of life and how fulfilling the moments can be. I returned to music and gradually began a new life as a full time performing songwriter, there are a million other smaller dreams I’m still working on.

Reminders & Resources - The Doctors are incredible people, but only human - Remember that whatever they tell you is ultimately just their educated guess. They are proven wrong every day. If “there’s one chance in 500, someone’s gotta be the one.” Never stop thinking that you’re the one. If there is a brain tumor support group in your area, join it. One of the greatest comforts and strengths you will find is in the sharing with others - particularly as you discover that you are in a position to help others - and as you do so, will help yourself. It’s a magic that never fails. The policy Brain Tumor Center where I went is to return your call within 24 hours. Be sure to have your questions ready so you don’t forget. My doctor Henry always does better than his best.

The Brain Tumor Mailing List - This is an astounding resource where over 900 patients, caregivers, and medical professionals from around the world ask questions, make comments, and provide answers to just about any thing you can think of. I’ve made countless friends on the list who are a big part of my life today. It’s from T.H.E. Brain Trust.

Websites - There are A LOT of great websites with brain tumor info - I suggest starting with the following:
Al Musella’s List of Clinical Trials and Treatments
The National Brain Tumor Foundation
The American Brain Tumor Association

I am on tour around the country pretty much all the time and would welcome the chance to meet you if I’m in your area.