|
The
Dragon Slayer Membership Newsletter
 Lonnie Cook had gone through 10 rounds of chemo in nearly as many months when he told his wife in March
that he no longer wanted the treatment that was slowing the progression of his rare terminal cancer. That also was
around the time the 43-year-old Richland man and his wife saw an article online about a surgery that was curing those who
had his form of cancer. "It was almost like it was meant to be," said Lori Cook, 38. Lori called Miami's Jackson Memorial Hospital and explained that her husband suffered from Leiomyosarcoma, which
affects one in every 4 million people. Lonnie's tumor is in his abdomen, near his pancreas. "They seemed
really excited that they would be able to do this again," Lori said. The surgery has only been done twice before
-- once at Jackson Memorial and another time at Atlanta's Emory Clinic. The cutting-edge surgery involves removing several
organs, including the intestines, from the body and removing the tumor in the abdomen. The Florida woman whose cancer
was treated by the surgery fully recovered. "There may be a cure out there for me," Lonnie said. But
it's been nearly two months since the first call to the Miami hospital and Lonnie still is no closer to a surgical cure
for the cancer that doctors say could kill him in less than two years. His insurance has twice denied covering the
more than $1 million surgery because it is considered experimental and out of the company's geographical coverage area,
the Cooks say. "You can't just have a number to a person," Lonnie said. "How can they just tell
me, 'Sorry, you're out of territory?' "It's just hurdle after hurdle," he added. "There
is a cure, but your insurance won't cover it." The Cooks plan to appeal their insurers -- First Choice's
Northwest Sheet Metal Workers -- for a third time, and many in the health care community are on their side. Lonnie
and Lori leave this weekend for a consult at Jackson Memorial. There, they hope to get ideas from physicians and hospital
staff about how to approach their insurance company. They also are traveling to Emory Clinic and New York's Memorial Sloan-Kettering
Cancer Center this month to do the same. "When I talked to (the hospitals), they're excited about it,"
Lori said. "This could be huge for them. "I think this appointment in Miami is going to tell us a lot." The
Cooks might also approach surgical equipment manufacturers, such as GE, because sometimes they sponsor surgeries, Lori said.
Even if insurance does agree to cover the expensive surgery, it will only cover about 50 percent because it is considered
a transplant surgery. "It's kind of a gray area," Lonnie said. They're hoping to work with
the hospitals so the surgery is coded in a way that would allow insurance to cover 80 percent of the cost, they said. Meanwhile,
family and friends are in the planning phases for community fundraisers for the Cooks. Lori and Lonnie's 18-year-old
nephew is establishing a foundation called Team 24 -- named after Lonnie's baseball number. Team 24 will allow companies
to sponsor the cause, then the sponsors' names will be printed on shirts that will be sold, said Micah Butler, a senior
at Kamiakin High School. "I'm to the point where I want to make a difference," Butler said. Lori
said Butler's effort is good timing since she's been told several community members are in the beginning stages of
fundraising plans for Lonnie. "Raising money and getting all that is going to be fun in getting to help him,"
said Reily Thorington, 14, Lori's daughter. Butler and the Cooks say Lonnie's life is the most important thing
and if insurance doesn't cover the surgery, they'll have to consider other options. "You sell everything,"
Lonnie said. "I'm 43 years old. I feel good.
What a Breakthrough for LMS, Where
there is Life there is Hope!
Unique Transplant Surgery Beats CancerSurgeons
Take Out Organs, Remove Tumors, and Then Put Organs Back March 24, 2008
-- Florida transplant surgeons announced the first successful multi-organ transplant in which they temporarily took out all
of the organs in the abdomen of a 63-year-old South Florida woman with a rare type of cancer so they could remove the tumor and its blood supply. The surgical team discussed the 15-hour surgery at a news conference
Monday at the University of Miami/Jackson Medical Center in Florida. "This is very brand new and unique approach,"
says Tomoaki Kato, MD, the transplant surgeon who led the operation. "We have done a multi-organ transplant before, but
not in the same person. We have removed multiple organs and then put them back in another person. It is very risky and definitely
one of the most challenging surgeries of my career." But so far, so good. The surgery took place three weeks
ago. The patient, Brooke Zepp, is doing "great," Kato tells WebMD. "She is considered cured at this point,
but only time will prove its long-term efficacy." When Zepp watched a graphic video of the grueling surgery during
the news conference, she held back tears and said she couldn't believe it was her. Vexing Tumor LocationThe
transplant surgery was so tricky because the tumor, called a leiomyosarcoma, was located deep in the patient's abdomen
and wrapped around the aorta and the base of the celiac and superior-mesenteric arteries. These arteries supply blood to the
stomach, pancreas, liver, spleen, small intestine, and much of the large intestine. "If we tried to remove this
tumor in the usual way, it would cause damage to the organs supplied by all these arteries," Kato said at the news conference.
"This is considered inoperable using a usual surgical approach." There was literally no room to remove the
tumor without damaging the organs. Given six months to live and told that the tumor was inoperable by multiple surgeons, Zepp
underwent a combination of chemotherapy and radiation to kill the cancer at other medical centers, but the treatments did
not work. Organs Put on Ice"We took a very unusual approach and took everything out of the body temporarily,"
Kato explains. "All the intra-abdominal organs and part of the aorta were temporarily removed, chilled, and preserved
outside the patient's body." Then, the tumor and the vessels were removed from the organs and placed in an
ice-cold basin. "The blood vessels were then replaced with artificial ones and all the organs were reimplanted
in their normal position." This proved the most difficult part of the surgery, he tells WebMD. "After removing
the organs, we have to make sure that we will be able to put them back in a good condition." No anti-rejection drugs are needed as the patient is getting back the same organs that were removed. This may be the tip of the iceberg, Kato
says. "The new surgery may one day benefit people with other tumors that are located in the same area."
Miami doctor breaks new ground in cancer surgeryBy Tom Brown MIAMI
(Reuters) - Dr. Tomoaki Kato had to remove a lot more than a cancerous tumor during an unprecedented operation on a 63-year-old
Florida woman earlier this month. To get to the tumor, which was buried deep in Brooke Zepp's abdomen
and threatened to kill her within months, the organ transplant specialist said he first had to remove her stomach, pancreas,
spleen, liver and small and large intestines. The organs were chilled and preserved outside Zepp's
body during a painstaking 15-hour operation at the University of Miami/Jackson Memorial Medical Center. They
were re-implanted in their normal position after the tumor -- which was about 2 inches in diameter and wrapped around Zepp's
aorta and the base of two other arteries -- was removed. Kato said that never before have six organs been
removed from a patient's abdomen to allow doctors to go after a malignant growth previously considered inoperable because
of its location. "There's nothing really simple here," Kato, who trained as a surgeon at
Osaka University in Japan, told Reuters on Monday. "I don't want to say acrobatic but it's kind of, in a way.
It's a very tricky operation. "We've done pieces of this surgery many times but not the whole
thing like this," said the 11-year veteran of the University of Miami Transplant Institute who led a team of doctors
that operated on Zepp. Zepp was diagnosed with leiomyosarcoma, a rare form of cancer. But Kato said the
type of surgery he performed on March 4 ultimately could benefit people with more common diseases. "There
might be a lot of applications," he said. During the operation, Zepp, who was expected
to be discharged from her Miami hospital this week, had many blood vessels replaced with artificial ones made of Gore-Tex. "She
came to me out of desperation,' Kato said. "I'm really glad it worked out well." (Reporting
by Tom Brown; Editing by Michael Christie and Xavier Briand) By Tom Brown MIAMI (Reuters) - Dr. Tomoaki Kato had to remove a lot more than a cancerous
tumor during an unprecedented operation on a 63-year-old Florida woman earlier this month. To get to the tumor, which was buried deep in Brooke Zepp's abdomen and threatened to kill her within months,
the organ transplant specialist said he first had to remove her stomach, pancreas, spleen, liver and small and large intestines. The organs were chilled and preserved outside Zepp's body during a painstaking
15-hour operation at the University of Miami/Jackson Memorial Medical Center. They were re-implanted in their normal position after the tumor -- which was about 2 inches in diameter and wrapped
around Zepp's aorta and the base of two other arteries -- was removed. Kato said that never before have six organs been removed from a patient's abdomen to allow doctors to go after
a malignant growth previously considered inoperable because of its location. "There's nothing really simple here," Kato, who trained as a surgeon at Osaka University in Japan,
told Reuters on Monday. "I don't want to say acrobatic but it's kind of, in a way. It's a very tricky operation. "We've done pieces of this surgery many times but not the whole thing
like this," said the 11-year veteran of the University of Miami Transplant Institute who led a team of doctors that operated
on Zepp. Zepp was diagnosed with leiomyosarcoma, a rare form
of cancer. But Kato said the type of surgery he performed on March 4 ultimately could benefit people with more common diseases. "There might be a lot of applications," he said. During the operation, Zepp, who was expected to be discharged from her Miami
hospital this week, had many blood vessels replaced with artificial ones made of Gore-Tex. "She came to me out of desperation,' Kato said. "I'm really glad it worked out well." (Reporting by Tom Brown; Editing by Michael Christie and Xavier Briand)
December,
2007
I recently spoke with Ed and Lori Hoag and find that LMS awareness has made phenomenal
strides. It is a wonderful miracle and we can all thank each other for working so hard for this awareness. It
is amazing what has been accomplished in the last few years. We now have Doctors asking for funds to research LMS and
we need to step up and start raising more funds so that when we are asked for funds they are available. Isn't
this a wonderful predicament to be in? I never thought this day would come in my lifetime, I am ecstatically happy!!!
Now what we need to concentrate on, is a committee to come up with fund raising activities and then
help get them off the ground. If you think you might have the time to help out with this project please get with the
NLMSF. This is a crucial point we are at, and we need to do everything possible to make the research funds available.
I am still amazed that the interest is there and we are at this point. If we were to have more ongoing fund raisers and maybe
some annual ones, the more you do something the easier it gets. Look at the success of the fund raisers that are already
in place. The foundation needs to get going, and we cannot do it without everyone's help, participation, and ideas.
One thing I plan to personally do it to give 25% of any monetary gift I receive and 25% of a dividend check I get twice a
year. It may not be much, but it all adds up! No gift is to small! Awareness ribbons and pens are available
for any function be it garage sale, bake sale or whatever, through the foundation.
Let's
put our creativity to work and be prepared to work together for our cause, LeioMyoSarcoma.
Jane
Moulds, Survivor National LeioMyoSarcoma Foundation Board Member |
|
