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My personal odyssey
through carcinoid began on April 30th 2001 when I went to my
family physician, Dr. George Valley, to determine why I had a persistent
red face with no apparent cause. My doctor gave me a few possible
explanations, but suggested I see Dr. Paul Sayers, a dermatologist.
The
dermatologist asked a lot of questions and finally suggested a 5HIAA
test. It came back positive. I then returned to my GP to find out what
it meant. He said I had “carcinoid”. He and his nurse were very
solicitous. I thought, this sounds like carcinoma.
“Is this cancer?”
I said. He replied that it was.
He told me to see an oncologist immediately. I was on my way.
I met with my
new oncologist, Dr. Robert Marschke, a few days later and learned he had
only seen a handful of carcinoid patients in 25 years of practicing
oncology. He told me I needed to consult with the experts at the
world famous Mayo Clinic. I was off to see “The Wizard”.
A few weeks
later, my wife and I were winging our way to Rochester, MN to see Dr.
Joseph Rubin at Mayo. After what seemed like every medical test known
to man, we asked the hardest question.
“Can you help me?”
I asked. “I don’t know,” he said. “It will be up to the surgeon to
decide.”
The following day,
we met with Dr. David Nagorney a professor of surgery at the Mayo
Medical School. Around Mayo, they call him “The Wizard”.
“It’s borderline,”
he said, “but I’ll try.”
The next day,
he removed most of my liver and a large piece of my small bowel which
both had metastatic carcinoid cancer, along with my gall bladder and
appendix, to which it often spreads. This, however, was just the
start. A few days later I developed peritonitis, which required opening
me up again. Then I developed a blocked liver duct, requiring a
specialist to conduct an ERCP procedure at another MAYO hospital
facility. I ended up spending 21 days in the hospital, much of which I
fortunately can’t remember. After 30 days at Mayo, I came home to
recuperate.
Unfortunately,
after 6 months my disease progressed both in my liver and then to my
bones. Dr. Marschke started me on interferon injections three times a
week and two large sandostatin injections every month. The tumors and
markers progressed slowly for four years with this treatment, under the
care of oncologist, Dr. Diana Medgyesy, as Dr. Marshke had moved to
Scottsdale AZ. During this time I also underwent six weeks of radiation
treatments, twice a week, on my throat, which had also developed a
dangerous lesion.
Through the
carcinoid website, and with doctor Medgyesy’s help, we learned of Dr.
Eugene Woltering, in New Orleans, a pioneering carcinoid researcher.
We met with him in 2005; just 2 weeks before Hurricane Katrina destroyed
his clinic and the hospital in which it was located. Again, after
multiple scans and tests, we asked the question, “Can you help us?”,
“I don’t think so”
he said, “but there might be someone in Houston who can.”
Houston? “Yes,” The
only place in the country where this treatment is available.
He referred me
to a colleague of his who had just started treating carcinoid patients
with a new isotope called Induim 111, pentatreotide. In October 2005,
after dodging Hurricane Rita, I arrived at Excel Diagnostic Imaging
Clinic in Houston and met. Dr. Ibrahim Delpassand. After 5 solid days
of scans and tests, Dr Delpassand agreed I was a candidate for the
isotope. Five days later I had the six-hour infusion. It was around
this time that I realized how new this treatment is. I was only the
fourth patient to have it since it’s approval by the FDA.
“Come back in three
months and we’ll repeat the scans to look for any improvement and see if
a second dose is warranted.” They said. In February 2006 we were back
in Houston. Mixed results but at least encouraging enough to repeat the
dose.
As this is
being written, (mid March 2006) I am “stable”. We will repeat the tests
in three months and hope. There is no third dose.
When I first
began this journey, I was told my life expectancy was 2-5 years. I am
now at 5 years and counting….and counting.
Lee Curtis, age 58
Ft. Collins, CO
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