My ex-husband, Joe, is a long term survivor of primary central nervous system lymphoma. At the time of his diagnosis, this was an especially deadly brain tumor with only a 2-3% five-year survival after standard treatment of that time. (Please note: with methotrexate-based chemotherapy regimens, such as Joe eventually had, survival is now vastly improved with an approximate 50% four-year survival). It has been 34 years since his diagnosis and Joe has been off all treatment for 32 years now with no recurrence of his disease.
He celebrated his 71st birthday earlier this year-- amazing for someone told to get his will in order at the age of 37! He is also well and fully functional. Joe is a cpa-lawyer who specializes in the valuation of pensions and businesses for divorce proceedings. He spends much of his time being grilled as an expert witness in court proceedings and has been listed in the '100 Best Lawyers in America' book. Except for some mild forgetfulness, his intellectual abilities appear to be unscathed. Joe is also physically active, and most importantly, still here to be with our family which now includes our beautiful 14 year-old granddaughter. But, it was a long journey from the diagnosis to his current condition.
In September of 1984, a CAT scan revealed a 3cm mass in Joe's third ventricle. The neurosurgeons at our local community hospital informed us that this was an inoperable location and that, at the age of 37, Joe should get his affairs in order. After a night of hysteria, I pulled myself together and decided to become Joe's advocate. No one was making any attempt to refer us and I realized I would have to do it myself. If the worst did happen, I wanted to be able to look our two young sons in the eye and tell them that I had done everything I could to save their father. My efforts would lead to two new treatments that were unavailable in our home state of Michigan.
I sent out a call for help to everyone we knew and, fortunately, two of our friends were related to an orthopedic surgeon at the Mayo Clinic. This surgeon checked with the neurosurgery department and found out that a neurosurgeon new to Mayo, Dr. Patrick Kelly, specialized in deep brain tumors. Dr. Kelly was awaiting my call. Over the phone, he described his technique, called computer-assisted stereotactic laser surgery, and I was blown away. Dr. Kelly's technique uses a computer-guided laser beam to vaporize deep tumors layer by layer. It was more precise and caused less damage (and swelling) to surrounding normal brain tissue than standard surgery. Four hours later Joe and I were on a plane to Minnesota.
The long surgery was highly successful - over 99% of the tumor was gone - with no brain damage. Even Dr. Kelly called it a miracle. But, the biopsy was unable to establish a diagnosis. Even after sending the slides to the best neuropathologists around the country, there was no consensus. We decided to abide by the majority opinion, which was that of a low-grade astrocytoma. After much agonizing and research in the medical library, we decided that Joe should have 5000 rads of radiation to the tumor and the immediate surrounding area. This was done at a major medical center close to home.
One month after the radiation was finished, Joe again began to have headaches. A CAT scan revealed a second tumor in a completely different area of the brain. We knew it had to be highly malignant to recur so quickly. Back at Mayo, Dr. Kelly did a stereotactic biopsy which confirmed his suspicions. We finally had a diagnosis - Joe had a primary central nervous system lymphoma. These tumors, unlike gliomas, tend to occur in multiple sites throughout the central nervous system.
The neurooncologists at Mayo had little to offer. Radiation did not produce a durable remission and the tumor was so rare that they had never given chemotherapy for it before. This, along with the fact that I no longer trusted anyone, spurred me to return to the medical library. After many hours of searching the Index Medicus and references at the back of articles (no Internet back then!), I found an article written by Dr. Edward Neuwelt of Oregon Health Sciences University in Portland. He was a pioneer in a chemotherapy treatment called blood-brain barrier disruption (BBBD) which temporarily breaks down the brain's guard allowing high concentrations of chemotherapy to reach the tumor. It was especially effective in treating CNS lymphoma. The only other treatment I could find was a less aggressive one offered by a physician at Dana Farber in Boston. As we struggled to decide, I asked both physicians the 24K question: how many patients have you treated and how are they doing? The physician at Dana Farber was evasive and never answered the question (I would later learn there were NO survivors). On the other hand, Dr. Neuwelt was very open and told us that he had treated nine people with one alive three years and another for two. It wasn't much to go on, but this was much better than 2-3%. At that time, BBBD was a phase II clinical trial available nowhere else in the country (it is now a multicenter phase III trial). So, now it was off to Portland.
BBBD is a rigorous treatment, done in the hospital and requiring intubation and an overnight stay in intensive care. But, it was well worth it. After only one treatment 90% of the tumor was gone and after a second round of BBBD we never saw it again.
Thus, by overcoming my own despair and becoming my sick husband's advocate, I had been able to find two very new and little-known treatments. Joe was one of the first 70 people in the United States to have computer-assisted stereotactic laser surgery and the tenth person to receive BBBD.
There were other factors in Joe's recovery as well. I pumped him full of high doses of anti-oxidants (Vitamins C, E, beta-carotene, and selenium) which may have cancer-fighting properties. However, as anti-oxidants can also potentially interfere with treatment, especially radiation, please check with your physician before using these. Joe also practiced guided imagery where he imagined his white blood cells destroying the tumor. This, and his strong religious beliefs, were very helpful emotionally.
So, my overall message to you is don't give up. Use all the resources available, which are far better than when I was helping Joe. If your physician is not aware of a treatment, show him/her a medical journal article or its listing in PDQ, ClinicalTrials.gov, or Virtual Trials. And if he/she is still leery, check it out yourself. Investigators of clinical trials WILL talk to patients. And, my experience has been that the best ones are also the nicest. For more information about the BBBD treatment Joe received, go to www.ohsu.edu/bbb. For general information about clinical trials, I recommend the paperback book 'Cancer Clinical Trials' by Robert Finn which is available through Amazon.com. In the intervening years since I originally wrote this story, I have completed a master's degree and am a physician assistant practicing in family medicine/endocrinology in addition to keeping up on brain tumor treatment and continuing my volunteer work as a cancer patient advocate. Please feel free to send me a message below if you have any further questions. The best of luck to you!!
Lydia Cunningham Rising