Decker seeks treatment in Switzerland
Peggy (Diehl) Decker of Muscatine, Iowa, is seeking treatment for her carcinoid cancer in Switzerland.
She made one trip to Switzerland on Sept. 29, 2008, for a treatment and will return there Dec. 8 for a second and hopefully final treatment.
Decker said, “In March of 2006 I lost my hearing in my right ear. I went to the doctor and when he removed wax from my ear he found a tumor. The tumor was removed and when the pathology reports came back they said it was malignant - being a carcinoid tumor. I was sent to another doctor in Iowa City and he did an octreoscan and found two more tumors, one on the left Vegas nerve (on her neck) and one on the right skull base.
Her physician determined her best course of action would be to travel to Swizterland to undergo experimental treatment with physicians he is working with there.
Decker said the treatment is not performed in the United States because her case is so rare it is not profitable enough to treat here.
Her physican is Dr. Thomas (Dr.l Odo) O’Doorisio, a professor as well as being a member of the Department of Internal Medicne and a member of Endocrine-Metabolism faculty.
Twenty-four hours prior to her scanning Decker was injected with a nuclear tag - about six millicuries. It piggybacked onto a Samatostatin analog (like sandostatin). This tag is then taken up by any tissue exhibiting a type two receptor. The tumor will light up in the scan showing where the tumors are.
Once in Switzerland her treatment took minutes in the hospital. They hooked her up to an IV. The IV had a valve. Decker said they took a large needle out of a lead lined box to administer the treatment. “There was no discomfort. After three hours I was released. I walked around for three hours after the release.”
Decker said her first treatment cost her 9,240 francs which is about one for one dollar wise.
Combine that with the $2,000 for the plane tickets and what they paid at hotels (more than $200 a night) and hostels (more than $100 a night) while in Switzerland and the trip was extremely expensive.
Decker said, “Food is extremely expensive there. Six dollars for a bottle of water, $15 for a meal at McDonalds.”
And she still has at least one trip left to take. “I’m pretty sure two will do it,” said Decker. She did meet a man there who was on his seventh treatment.
“My insurance won’t pay for any of it,” said Decker, “because it is not USDA approved.”
Prior to her decision to make the trip overseas Decker was taking seven shots a day to keep the carcinoid in check. Her insurance did pay for the shots she was getting which were $100 apiece.
After her Switzerland treatment she hasn’t had to have the daily shots for about two weeks.
Without the shots Decker had bouts with diarrhea, high blood pressure, flushing and headaches. She also had an episode of amnesia.
Decker said the position of tumor on her Vegas nerve and her head makes it complicated to treat. She said if they operated on the tumor on her Vegas nerve there was a 70 percent chance there would be nerve damage and she wouldn’t be able to speak again.
Decker said the tumors usually develop in the gastrointestinal tract (appendix, stomach, small intestine, colon, rectum) and the lungs. The fact that hers were on her neck and head made her a unique case. It was one of the reasons she was able to receive treatment in Switzerland.
“You have to be invited to receive treatment,” said Decker. After she made it known she would be willing to travel to Switzerland she had to go through a series of tests so the physicans there (Universitatsspital Basel) would have up-to-date information.
The Diehl Curse
Decker said the disease is hereditary passed down to the males in the Diehl family. It can be traced to the men in her family back to the 1800s, back to their immigration in Germany.
While in Switzerland they took some of her blood to Germany for testing, with the hopes it can help some of the people there.
Decker reports that her sister also has three tumors but, at this point, is not sick. “I think I’ve had mine for at least 10 years,” said Decker. “The are very slow-growing. It would be easy to have them and not know it.”
She is the granddaughter of Mary Diehl from Aledo.
The Peggy (Diehl) Decker Benefit will be held Nov. 8 from 4:30 p.m. until 8 p.m. at the Moose Lodge at 207 Lake Park Blvd, Muscatine.
There will be a chili/chicken noodle soup supper with desserts. This is by free will donation. There will be themed gift baskets, a Thomas Kinkade limited edition print raffle and a silent auction and additional raffle items.
For more information, please call Anita Lange at 563-260-3404.