In July 1996, Richard had a seizure while driving to meet friends for dinner. After his diagnosis, he realized that the neck pain and numbness of his left hand was not from a pinched nerve, as he had suspected. He remembered forgetting things for the past few months prior to his seizure. He had told me about being clumsy, when I had seen him two months prior. He seemed to be tripping over things with his left foot. We teased him...he had such big feet! What he had was a tumor and it caused a loss of peripheral vision on his left side and some weakness.
By miracle, he was able to drive his car to the restaurant that evening but had partial paralysis and continued to seizure when he got to his friends. He was rushed to the hospital in Geneva. I remember his phone call as if it was yesterday. The nightmare began.
I am writing this now not for emotional impact, for which there was an enormous amount, but to give information on how Richard survived the prognosis of 3-6 months for over 2 years. The memory of what my family experienced with Richard that first month is vivid. It is then we began the fight for Richard's life.
We have learned a great deal and want to carry out Richard's wishes to help others going through this. He dreamed about a website that would make it easier for those seeking treatments. We have found those sites, that do exist, and have created a link page for Richard, so his dream can come true.
The following is a summary of Richard's treatments and some of our opinions of how they helped or hurt. The link portion of this page will be added to constantly and it is our hope that many are helped and lives are saved by these resources. We will be adding a new section detailing some of the important lessons we learned about how to go about researching and seeking out the best treatment and care.
Richard had surgery 2 days after his seizure in Switzerland. They removed 80% of a large tumor in his right parietal lobe. They told my parents immediately (before biopsy results) that the tumor was malignant and he had no chance. Three to six months. His daughter was three years old. Without a pathology report and tumor type it is very difficult to get information. We began to search the internet and call cancer hospitals in the United States. We signed on the the Braintmr list server, our greatest resource. The pathology results 10 days later was glioblastoma (gbm), the most malignant brain tumor, stage 4.
Richard and my parents returned to New York as soon as he was able to after the first brain surgery. We investigated clinical trials, since there is no known cure for gbm at this time. We looked into alternative medicine and conventional chemotherapy and radiation. We met with many doctors at a few hospitals. We gained hope by hearing from other survivors that had beaten the odds of 12 months.
Richard chose to start a clinical trial in Stony Brook, NY at University Hospital. It was inter-arterial cisplatin and VP-16. He received treatments every 3 weeks and had 4 rounds of this. His tumor responded with over 50% reduction. He tolerated this very well and had good blood counts throughout. He returned to Switzerland to begin full head radiation each day for 6 weeks. Radiation wasn't as kind to Richard. It was hard on his system and his blood counts dropped. He needed a transfusion and was very weak and lethargic. He had no reduction in tumor size during or after the radiation. (opinion - I saw no benefit in the radiation and his quality of life was less...we will never know for sure if it did any good or not)
After a few months the tumor started to grow. Many surgeons told us it was inoperable and way too dangerous to attempt surgery. We were not given many options or hope. We luckily sent his MRIs to Dr. Patrick Kelly at NYU and found out he was a candidate for the special surgery that Dr. Kelly has perfected. Computer Guided Volumetric Sterotactic Surgery, a lot of big words for a life saving technique available in too few places. Dr. Kelly was able to remove 100% of the visible tumor without causing any further deficits for Richard. He bought time.
Richard did really well after the surgery and had no further treatments for a while. After about 5 or 6 months he had a recurrence of the tumor and once again was told inoperable. This time we knew to get other opinions and once again Dr. Kelly was able to buy Richard time and remove 100% of the visible tumor again. We were always aware that the nature of a gbm tumor is re-growth and aggressiveness.
Richard returned to Switzerland and began another clinical trial of temozolomide, a newer chemotherapy. After 4 rounds and MRI results, we knew it was not working the way we had hoped. Richard's weakness on his left side started to get worse and he was eventually paralyzed and had vision problems from the tumor growth. He returned to NY but was weaker and had many more problems. This time the doctors all agreed, including Dr. Kelly, that the tumor was no longer operable and had spread to both sides of his brain. He was losing his battle :( We searched for more options and tried to obtain Thalidomide in the United States. This turned out to be a daunting task and we were never successful. (opinion- we aren't sure it would of been helpful at this late stage, but feel there is promise with that drug at earlier stages).
There are many details that I have left out of this summary and we will be happy to share them with anyone that wants to email us. We have experiences with hospitals and doctors and finally with hospice that may be helpful to others going through cancer treatments. Please feel free to ask, it hurts us more not to help.
We hope the links and resource we will provide you here will allow you to have hope and faith during your own struggles.