MM Patient Seeks Treatment From Mayo
On January 18, Mrs. Elsie Schladweiler, a sixty-five year old Parkston, South Dakota resident made an appointment with doctors at the Yankton Clinic in Yankton, South Dakota, complaining of abdominal pain and cramping. The initial diagnosis since September 1999 was irritable bowel syndrome. A CAT scan was taken which revealed a bulky mass on both sides of her abdomen. Her doctors suspected ovarian cancer and scheduled her for a needle biopsy of the peritoneal mass on January 25, 2000. The biopsy was performed as scheduled and after reviewing the two short cores of tissue, the pathologist suspected a malignant epithelial tumor. Using immunoperoxidase staining, they confirmed an epithelial process but needed more tissue to solidify a diagnosis. On February 12, Mrs. Schladweiler underwent a debulking surgery. Portions of the tumor were sent to the Mayo Clinic in Rochester, Minnesota for analysis and the diagnosis returned diffuse malignant mesothelioma. In March, while recovering from a re-opened incision, Mrs. Schladweiler suffered further complications in the form of a stroke. She recovered quickly with speech therapy and was eager to begin chemotherapy treatments. Finally, on April 14th, Mrs. Schladweiler consulted with an oncologist in Yankton who started her on a chemotherapy regiment that included Cisplatin and Gemzar.
In June, Mrs. Schladweiler began to suffer side effects from the treatments, including foaming at the mouth and severe nausea. In May, her white blood count dropped dramatically and she again stopped her treatments, this time for three weeks. She was afraid to eat. She looked at her son, Rick, and said "I wish I would either hurry up and die or hurry up and get better." Her doctors reduced the amount of Gemcytabine and resumed her treatments on June 21. Her willingness to fight returned. She refused to refer to herself as "terminal" or use the term "hospice care." Elsie's three children stayed right by her side, through the surgery, recovery and chemotherapy treatments. She felt fortunate to have her loving family at her side to help her spiritually and physically.
In July, her doctors discontinued the treatments, after discovering liver metastes and new tumor growth. With no plan B, her family alone began to search for a new treatment program. They contacted several major centers, including the Mayo Clinic in Rochester; the University of Colorado Cancer Center in Denver, Colorado (Onconase); the University of Chicago Cancer Research Center in Chicago, Illinois; M.D. Anderson in Houston, Texas; and Dr. Robert Taub in New York City.
In August, Elsie met with Dr. Taub in New York. Unfortunately, she did not qualify for his multi-modal protocol due to her liver metastases. Even with the bad news, Elsie was grateful for having met Dr. Taub and for the considerable amount of time he spent with her. She felt that this is where she needed to be, in the care of someone who cares and knows how to deal with mesothelioma.
Dr. Taub also told Elsie that he helped write the clinical trial protocol for the Cisplatin and Gemzar combination that her local oncologist had tried in South Dakota. When he learned how sick it made her, he personally apologized to her and regretted that it did not help her. Elsie appreciated his honesty. She has read about the lack of research historically to search for a cure or even new treatment options. She knows this, but it provides little comfort, as her interest in the issue is far from academic. Dr. Taub suggested that she enroll in a phase I clinical trial in Texas involving ALIMTA (R) (pemetrexed disodium) every week.
Elsie applied and was hoping to be accepted into the ALIMTA phase 1 trial at the Cancer Therapy & Research Center(CTRC) in San Antonio, Texas, but learned that the trial was on hold for evaluation. However, doctors offered a similar trial using ALIMTA with CPT-11. After consulting with Dr. Taub, she enrolled in the phase 1 trial.
Although Elsie's health has changed considerably in the last two weeks, her spirit remains strong. She has tried to live a normal life, even mustering the strength to take a few day trips with her close friends. She has also begun a small quilting project. She is living with cancer, not dying with cancer, and doing her best to cope with her disease. Elsie enrolled in the Phase I program in late September. Unfortunately, after a few weeks, Elsie was removed from the program. Her health had deteriorated too quickly.
On October 23, her son Rick described the recent events:
" It is very true that in just the past two weeks Elsie's health has declined considerably. Just speaking and taking steps are very difficult for her. She is very, very weak. We are still coordinating getting her home, as she and my sister are stuck in Minneapolis for the night.
She received a blood transfusion in San Antonio, along with oxygen before we left (it took two days, she keeps having complications). Her hemoglobin keeps dropping, there is blood in her urine, and her skin is yellow. We began long overdue pain and sleep medication, along with a variety of bowel medications and iron supplements. We will be discussing what to do regarding border-line bowel obstruction with local doctors. We have placed a call to Dr. Taub, and awaiting any suggestions he may have regarding cancer management locally. We will be meeting with her recent local oncologist again on Thursday and home care nurses as soon as she gets home. He was planning on coordinating portions of the clinical trial locally, and even had some treatment ideas of his own. Doctors believe that travel is risky, and she wants to be at home. We are too far away from other clinical trial centers.
I am hoping she will make it home tomorrow, where she will be received by a community and church full of loving friends. The entire community was rallying support and well wishes for the clinical trial, everyone is stunned at the development.
I know that Elsie's spirit has not given up. However, her body is NOT cooperating. This morning as she was resting, I was rubbing her aching shoulders. She comments on how her skin is so loose, and that she could be folded in half. She has lost 70 pounds. She says that it isn't her body anymore, it is aged and wore out. I told her that I can still see her soul twinkling in her forever brown eyes. "
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This family will never give up. The Schladweiler family hope to hear back from Dr. Taub in the coming week.
*** POSTED NOVEMBER 14, 2000 ***
An Update, from the Schladweiler Family - December 18, 2000
"Elsie Schladweiler, age 65, passed away on the morning of December 16th of peritoneal mesothelioma. She was a loving, caring, and devoted wife, mother, and friend to so many. She had a tremendously big heart and thought of others needs before her own. Elsie will always be remembered for the life, love and laughter that she gave so unselfishly. She will be deeply missed by her friends and family."
The Schladweiler Family
The family requests that sympathy contributions be donated to The Mesothelioma Applied Research Foundation ( www.marf.org).
MARF
1609 Garden Street
Santa Barbara, California 93101
Phone: 805.560.8942
Fax: 805.560.8962
*** POSTED DECEMBER 18, 2000 ***
