Daniel Z. was born on April 15, 1951. Until last December of 2002, he literally had not spent a day in the hospital since the day he was born. He's my dad- the icon of fitness and perfect health. Dad was and is a successful businessman and family man. Imagine being the CEO of a community bank and dealing with GBM at the same time. My dad has successfully managed his job and his health this year.
In early December of last year, Dad began experiencing some twitching feelings in his stomach, as well as some stiffness in his right leg. He didn't think too much of it, especially since, coincidentally, he had just gotten a new pillow for his bed and thought maybe his back or spine was reacting to the new pillow. His leg problem worsened during the second week of December, to the point where he had a noticeable limp. Finally, on Friday December 13th, he had a distinct hand seizure on his right hand. Instead of visiting his children in Columbus, OH, he instead checked into the Cleveland clinic to determine the problem. A CAT scan and MRI was done, which revealed a 4 cm mass in the left frontal lobe. The tumor was actually located in what others would consider the back top part of the brain but technically, still located in the front left, near his motor skills area...this explained his difficulty walking on his right side.
To accelerate the story, Dr. Michael Vogelbaum and his team performed Dad's resection on December 17, 2002. The resection took about 3 hours. While Dad got the "privilege" of being in la la land in surgery, we got the horror of having to wait 3 hours or so to find out the news. That was the worst 3 hours of my life without question, but the Lord carried us, and carried Dad, as He has done and continues to do. Dr. Vogelbaum considered the surgery "near complete", removing the visible, enhancing portion of the tumor. They had to do a 2nd clean-up surgery 9 days later, because Dad had a brain infection resulting from the surgery. We have since determined that this is a blessing in disguise, since they theorize that those few patients who have infections, tend to really hyper-trigger their immune systems, which are alerted to the area of the tumor and begin the battle to eliminate the "renegade" cancer cells that may be left behind from surgery...
Dad's hospital recovery lasted about one month. It was a tough time of the year with the holidays and all, but as native Ohioans, we were thrilled to enjoy both our beloved Browns making the playoffs, as well as the Buckeyes winning the National Championship! That helped boost all of our spirits...
Our quest to find hope through follow up treatment wasn't really found at the Cleveland Clinic. Don't get me wrong, it is a world class facility, but frankly, no one was really giving us much hope for long term survival. We began combing the internet, asking lots and lots of questions. Ultimately, Dad and our family decided that we would be extremely aggressive in battling this monster...aggressive in ways that other patients may not even consider. Dad immediately stopped consuming processed sugars, hormone-injected red meats, processed foods in general. He began eating organic foods, purified water, and basically a natural foods diet.
In addition, Dad began a supplement regimen that included many items which have been found to augment, enhance and upkeep Dad's key blood cell counts, which as you know, is a very key factor in continuing on with chemotherapy regimens. We found a model survivor who we have used to "tailor" dad's treatment. His name is Dr. Ben Williams, a psychology professor at Cal Berkeley. Dr. Williams is an 8 year survivor of GBM and has been a tremendous resource in helping us find hope and a sensible way to fight GBM. Dr. Williams wrote a detailed book on his experiences and we highly recommend that patients and their families read it...it can be found on the Dr. Musella website (http://virtualtrials.org/musella.cfm), who also has a survivor webpage. Anyway, Dad's supplements have included green tea, Melatonin, PSK, GLA, Theanine, Indol 3-Carbinol, and several others. Dad is very disciplined in his diet and in taking these supplements and we stress that his blood counts to date are absolutely outstanding, and this includes 9 months of chemotherapy! Dad finds lots of good information on alternative supplements at http://www.lef.org. This is the Life Extension Foundation, a tremendous organization that isn't afraid to tell it like it is. One other noteworthy comment is that we want everyone to recognize that even today, our student doctors are only required to take 4 credit hours on Nutrition in medical school. Is it any wonder then why so many American physicians don't recommend any supplement therapies to help fight cancer?!?!?!
As for Dad's chemotherapy regimen, we subscribe to the Dr. Ben Williams' theory of a "cocktail" approach. The idea is to confuse the remnant cancer cells…keep them in retreat and in a state of disarray by throwing different strategies at them over time. Temodar was our first line of defense. Dad took it for 2 cycles. Then we went with CCNU for 2 cycles. Then back to Temodar for 2 cycles again. Now Dad is on his first cycle of CPT-11. All things considered things are great. Dad is approaching one year and so all MRI's show no sign of tumor! We are blessed with every day. As mentioned, Dad continues to work, play golf, and lead a normal life. He is still working to regain his lost power and control in his right leg, but he is making great improvements. Dad did have the standard 6 weeks of radiation done at the Cleveland Clinic during the first cycle of Temodar. We chose to have his chemo administered by one of the finest neuro-oncologists in the field, Dr. Henry Friedman, at Duke University in Durham, NC.
As I've said to so many others, there is so much more to tell than this email can say. Dad would agree that it is ultimately God's will as to the outcome of all of our lives. He has blessed us in so many ways, we can't count them all. One blessing worth mentioning is that Dad officially became a grandfather on October 14th, with the arrival of my brother's first child, Presley Grace. Dad is smitten with her as we all are...
My final comment is one of hope...that we as Americans don't have to accept the demure attitude of the medical profession as it regards GBM treatment. There are success stories, as Donna Ferrer and others will attest. Our message to you is that you research, ask questions, dig deep, and run against the conventional "assembly line" approach in treating GBM. I firmly believe that my dad is having success because of all the combined things that he is doing to help himself. We are going to Duke in December and are looking forward to Dad's one year anniversary and enjoying the holidays together as a family.
Added: 5/18/2004
I just wanted to let you know that my father and our family returned from
Duke recently for my dad's first PETSCAN and another MRI. The results
at this time are outstanding. Duke has rendered the opinion that there
is no evidence of re-growth, and the Petscan, in its alignment with the
latest MRI, was "cold". My father is stable with a high Karnofsky score
and more importantly, a high quality of life. He has continuing working
full-time as president of his local community bank. He will likely finish
up 2 more cycles of Temodar, at which time, we will consider Duke's advice
for continuous high dose Tamoxifen after that...God has mightily blessed
our family and we are grateful for each and every day!
If anyone would like more information on my dad's story, contact me below. May God bless you all.
Added: 7/4/2004
My father, Dan Zwayer, today received another terrific MRI review as conducted by Dr. Michael Modic,
of the Cleveland Clinic. We are very blessed and pleased to find that
Dr. Modic and his staff fee that this MRI shows not only stability, but
if anything, improvement in the area of my father's resection. Dad is
doing great. We are looking forward to considering other technologies/approac
hes as we move forward into a secondary phase of my father's treatment
strategy. We will keep you posted.
Added: 12/13/2004
After visiting with Duke last week, Dad has learned that there is again, absolutely no sign of any recurrence. Today, December 13th, marks his 2nd anniversary of learning of his tumor. He is doing great and enjoying the holidays with family and friends, and remains the president of his local community bank! Every day is a blessing.
Added: 10/21/2005
In April of 2005 my father was diagnosed with a recurrence of his tumor, near the location of his first tumor. This tumor was successfully removed in early June. We 'blame' the recurrence on the fact that my dad was on no treatments, other than certain supplements, for about one year. Since June, my dad has shifted his treatment strategy to an aggressive combination of chemotherapies once again. He did have some fluid accumulation which was drained in early September. As of this writing, his recent MRI is again showing no sign of any tumor. Our hope remains remain in the battle against this illness, and we're looking forward to Dad's 3-year survivor anniversary in December. May God bless you and all brain tumor patients and their families.
Dad's chemotherapy combination in 2005 has been:
Temodar 400/mg/day x 5 days, 23 days rest, repeat the cycle
Sulfasalazine, 1 cycle (don't know the dosage)
Temodar 400/mg/day x 5 days, 23 days rest (as of 10/05)
...beyond the above, we have 'overlapped' his chemotherapies with Verapamil and hi-dose Tamoxifen. In 2006, we are considering Avastin + CPT-11 combinations, as we are very excited about some results there. Also, we are keeping an eye on the IL-13 trial, and are hoping to see great results there as well, and may consider it for future usage. Accutane has also come back into the picture, though my dad hasn't used it in 2005. The Cleveland Clinic is once again using Accutane in its GBM trials, whereas, just a few years ago they said it 'wasn't effective'...we do believe Accutane is in some way effective against GBM, and are keeping it in our future arsenal as well.
Added: 12/15/2005
One December 7th
and 8th, we traveled to Duke to find that father has had no noticeable change
from his September MRI. Dad had been back on Temodar, and it is likely
that he'll continue on Temodar for the time being, while we consider other
treatments for possible use in the future. God continues to bless my Dad,
who will celebrate his 3 year survivor anniversary on December 13, 2005.
Sincerely,
Mick Z.
