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This site is dedicated to the researchers who pioneered Gleevec, the cancer patients who participated in clinical trials, my family and many friends who never wane in their support for me through this journey and to Dr. Rizvi (Bayshore, NY) and Dr. Maki (Mt. Siani, NYC) who treat me medically and through their confidence, provide positiveness and above all HOPE.
Thank you all.
Please let me share that hope with my many web site visitors.

YouTube My Journeny    Youtube Dr. Oz
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On July 20, 2011, Novartis invited me to share my GIST journey with the Novartis employees in attendance at their Global Town Hall Meeting and I gladly accepted.  The audience was quite large at the Novartis building in Floram Park, NJ, where I spoke and there were also other locations around the world that participated via teleconfrence.

I was grateful for the opportunity to personally thank everyone at Novartis for their work and dedication towards someday ending the devastation that comes from a cancer diagnosis. 

There are no words that can communicate the joy that a small pill called Gleevec has brought to my family and me.  It has replaced the once horrible prognosis of GIST with life and hope, a truly giant accomplishment.  The Novartis team can take pride in working for a caring company that, through tireless dedication and help from the patients-pioneers, paved the way for the Gleevec success story.

I know from the "GIST" friends that I've made during my own GIST journey, that the gratitude I tried to convey was shared by them and that we also take comfort in knowing that Novartis' dedication to research will add to that success, so exemplified by Laurie Letvak and Novartis President of Oncology, Herve Hoppenot. 

My Journey - From my cancer diagnosis in March of 2005 until now, I have learned that no two cases are alike. The disease is the same and the treatment usually involves Gleevec. Some people find out that they have GIST and are treated with Gleevec to shrink tumors either to make them operable, or to limit their growth. In most cases Gleevec does what is expected, but not always, leading to other treatments.

Others, such as myself, are stunned by the diagnosis, which for me came after internal bleeding was noticed, emergency surgery was performed, and a week later GIST was found to be the cause. In my case, Gleevec was prescribed adjuvantly, immediately after diagnosis. Studies indicate considerable success with adjuvant treatment but the length of time it will work is unknown. My case provides some information which I am sharring now but I emphasize that no one should draw any conclusions based on my case - but instead, possibly my information will provide the basis for questions that you may want to ask your oncologist.

I have two oncologists that I see on a regular basis. One is Dr. Rizvi, a local oncologist located in Bay Shore, NY. The other is Dr. Maki, from MSKCC in NYC, a GIST specialist who's credentials are second to none in the field of GIST, sarcomas and other cancers. Dr. Rizvi tends to my month-to-month care, blood work and scans but equally important, he provides a level of encouragement and hope that I believe is responsible for my daily (mostly) positive outlook on life. The "mostly" is because cancer is a nasty b------ that keeps tapping on my shoulder and saying "remember me"? Both doctors communicate with each other concerning my care and both play an important role in my care.

My diagnosis came after the removal of two very large tumors. Two means there was already metastasis, a horrible addition to the diagnosis, but that was somewhat offset by a low mitotic count (3/50). I have been taking Gleevec adjuvently now for a little more than five years and have not had any recurrence of GIST.

This means one of three things: Gleevec is working, and is keeping the GIST at bay or, Gleevec did its work and killed any remaining GIST cells, leaving me cancer free, or I could be one of the 5% to 10% who, after resection, would not get a recurrence anyway (low odds, but possible). There is no way of knowing which of the three is responsible for the fact that I do not have any signs of GIST at this time.

Over the past year I have had a number of discussions with both Dr. Rizvi and Dr. Maki about the effect of continued use of Gleevec. My understanding from these conversations is that there is no data to support the continued use of Gleevec beyond five years (unlike the case if there is evidence of the disease) and furthermore that continued adjuvent use of Gleevec may result in a mutated form of GIST that is unaffected by Gleevec with only slight data to support that a mutation is more likely in the presence of Gleevec than in its absence. Additionally, there is data to support that after the cessation of Gleevec treatment, should there be a recurrence, Gleevec is likely to be effective, especially since it appeared to have worked during the first five years.

Having fully discussed these scenarios with both doctors and in particular my last visit with Dr. Maki the conclusion is that I will no longer take Gleevec in the adjuvant setting but my treatment will involve closer monitoring which includes one or more CAT scans per year.

Wish me luck.

(right after the short leader) - Click Here 

Video of Dr. Oz Gleevec Show

Click below for local listings of more Dr. Oz Shows.

I was invited to participate on the Dr. Oz show and happily accepted.  I was asked to provide my GIST story and photos.  Now many of those photos are in my GIST Journey Video (above).

I went with my daughter Amberly and the entire experience was quite memorable.  It was a pleasure personally meeting Dr. Oz and having the opportunity to thank him for raising public awareness concerning GIST.  This may support more research and help increase the potential of Gleevec targeting other forms of cancer through additional research paid for by donations to organizations like GCRF.

It was on the Dr, Oz show that I first learned that the number of cancers that respond to Gleevec is now up to TEN! The kind of research and the results of the work done by scientists like Dr.Brian Druker, who discovered Gleevec should inspire everyone touched by cancer, in any form and I ask that you take a moment to support this research with a donation of any amount you can afford.

The entire experience was wonderful from seeing many friends that I have met through my GIST journey to making new friends, especially the pioneers of the original GIST clinical trials who have been on Gleevec for over 10 years - but the high point was meeting Dr Druker, shaking his hand and seeing my daughter, Amberly, give him a hug for, most likely, saving her Dad.


FOX 5 News, Dr. Sapna chats with Amberly and Bill

Bill carries a tired Amberly along the walk while having a chat with Dr. Sapna of FOX 5 News.  I thanked her for her support and personal committment to helping those of us with "orphan" cancers.  She is a kind and caring person and we wish her success with her career at FOX 5 News.

Walt with a smile, pictured with Zander and Bill


Walt poses with Zander and me before the walk.  He is never to busy to share a "celebrity moment" with any of the Walkers.  He joked about how many kids wanted to have their pictures taken with him because he retired well before they were born.


Walt "Clyde" Frazier signs pictures for the Smiths

Above - Walt "Clyde" Frazier takes a moment to chat with Zander and Amberly while we look on at his bold signing of last year's pictures.  He is a humble, great man who continues to support our fund raising effort.  There is no way to thank him enough for his help but he says that "our appreciation is all the thanks he needs."



The pictures in the video show how much has happened since I wrote the section below, in 2007...

As for my family and me, so many things have changed so fast over the past year. Amberly, became a Tae Kwon Do Black Belt, started fourth grade and during last year she was accepted into ORIAN, the gifted children's program. My little baby, Zander, got on the school bus for the first time this year and started pre-school. Zander had the third surgery in as many years and is progressing nicely with his development. He had a rough start and has some catching up to do. He finished his at home therapy after three years and now gets OT, PT and speech in pre-school. We miss the visits from the therapists who were so close to Zander. The were like family but it was time for them to move on; Zander is growing up. Jeanne is thinking about going back to school and possibly going into the medical administration field. She had a rough year and a half since I was diagnosed but is the rock for our family.

Amberly proudly accepts her Tae Kwon Do Black Belt and Mom and Dad are very proud

Zander's first day of school

Jeanne, keeping it all going smoothly though it's been a bit rough.

Bill elected VP of Lindenhurst Rotary Club

We actually took a little vacation this summer and also got out on our boat a few times. We really enjoyed the summer with the house construction completely finished (now to begin the million little things still to be done). And as for me, I never know when to lighten up but enjoy the pace. This year, aside from joining the Board of GCRF, I was elected VP of the Lindenhurst Rotary and also joined the Lindenhurst Chamber of Commerce. My work at home is keeping me very busy and my job at Telephonics has given me some exciting new engineering challenges. So for now, I think I'll keep the name BiziBill.

Zander and Bill get a break at the beach

When I was diagnosed with cancer I got a free ticket on the roller-coaster of emotions. For me, living with cancer is difficult. It is hard to feel good but constantly be faced with reminders that I may become resistant to Gleevec. I have to remember that the researchers are working hard to find the cause of the resistance and that they may even find a cure someday. A transformation takes place that is hard to describe but you definitely think differently than you did before the diagnosis. When you come face-to-face with the prospect of dying at any moment, as I did during the six days while I waited for my path' report, you think about your unfinished work, the people who need you, and the parts of life you don't want to miss, especially seeing your kids off into the world.

Read about Chris Carley, a 10 year Gleevec survivor.

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