MEDICAL HISTORY
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.
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