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My GIST Journey Video - Updated Sept. 2010
YouTube My Journeny Youtube Dr. Oz
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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. |
From TUESDAY MAY 11TH
(right after the short leader) - Click Here
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.
Thanks
Bill |
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. |
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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."
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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. |
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