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Support Group Leader Brings Awareness to Little-Known Cancer

Arlene Preisendorf, co-leader of the Grand Island NE Support Group, highlights her experience with Multiple Myeloma and how the support group has helped her and others better understand the disease.

03.10.14

It started with back pain and extreme fatigue in the fall of 2008. Then came numerous infections.

Arlene Preisendorf, then an active 47-year-old working in a doctor’s office, thought she was just doing too much. She scaled back her activities. But her symptoms escalated, and in January 2009, she developed a blood clot in a vein between her spleen and liver. More tests revealed the cause — multiple myeloma, a form of blood cancer.

“I thought I would be dead in three years,” she said. “The word cancer puts the fear of God in anyone.”

Multiple myeloma is an uncontrolled growth of plasma cells in the bone marrow, which leads to a disruption of normal bone marrow function and can lead to anemia or low white counts or platelet counts and destruction of bone. Production and release of proteins from the myeloma cells into the blood and urine can also lead to kidney failure, Preisendorf said.

“It’s pretty unheard of,” she said.

Multiple myeloma affects the immune system and makes a person more susceptible to infections. It also makes the blood sticky so it clots easier and causes bruises, she said.

There is no cure.

The disease affects each person differently, so the treatments are diverse. Preisendorf isn’t on any medications but goes for checkups every four months.

She started chemotherapy and received an autologous stem cell transplant at the University of Nebraska Medical Center in September 2009.

The stem cell transplant bought her some time, and she was in remission until a few weeks ago. Her myeloma markers are slowly climbing, and she will soon have to begin making treatment decisions again.

But Preisendorf isn’t alone on her cancer journey. She’s married to Matt and has two grown children. And there is the unwavering support she receives from the Grand Island Multiple Myeloma Support Group.

She got the number for Jim Omel, a leader of the group, from the oncology department at St. Francis Medical Center.

“Jim was just a godsend,” she said.

Omel was once a doctor. Now he does research on multiple myeloma, which he has had for 17 years, and keeps the 12 to 14 other members of the group informed of breakthroughs and other health care news. Preisendorf’s doctors told her she had three or four years to live after her initial diagnosis.

“There are different types” of multiple myeloma, said Jane Bober, a fellow support group member. “Some are more aggressive.”

Through the support group, Preisendorf has been able to learn more about her cancer and talk to others who’ve suffered similar problems. Bober said she’s had broken bones and pain in her back. Preisendorf hasn’t broken any bones but can sympathize with the back pain.

“Multiple myeloma slows bone growth and causes holes,” she said. “X-rays of the bones of someone with multiple myeloma look like lace.”

Preisendorf was young for being diagnosed. People with multiple myeloma are usually 60 or older. It affects men more than women and blacks more than whites, she said. The disease is becoming more common, possibly due to environment toxins, and people are hearing more about it because longtime news anchor Tom Brokaw has multiple myeloma.

Spreading the word about the disease is a priority for Preisendorf. She is now co-leading the local support group with Omel. She also works with the International Myeloma Foundation to gather more information about the disease, which affects more than 100,000 people in the U.S.

The local support group, which meets from 10 a.m. to noon the third Wednesday of each month at the Evangelical Free Church, has also led to her meeting other Grand Island area residents with the disease. When she was diagnosed, she’d only heard of one other person who knew what multiple myeloma was. The symptoms of multiple myeloma are often confused with other diseases, she said.

“This is the primary reason for us to build awareness of this disease, as early detection will help people live longer through many treatment options, including chemotherapy, radiation, stem cell transplantation and novel and emerging therapies,” she said. “Recognition of this disease is important to me because it will lead to saving lives, increased funding for research and, most importantly, finding a cure.”

To further the spread of information, Preisendorf lobbied Mayor Jay Vavricek to proclaim March as Myeloma Awareness Month in Grand Island. She received a copy of the signed proclamation from Vavricek’s office on Feb. 18.

“We appreciate Mayor Vavricek’s help in raising awareness of myeloma,” she said. “This recognition is important to me because increased awareness leads to further research in finding a cure.”

She is also working with Gov. Dave Heineman’s office to get a similar proclamation for the state. That proclamation will be for March every year. She is scheduled to go to his office on March 13.

“That’s great,” Bober said. “Good work.”

Aside from her work with the multiple myeloma support group, Preisendorf has had to cut back on what she does. She isn’t able to work outside the home, and she’s learned not to take as many things for granted.

“I used to be a go, go, go person, and now I try to slow down and enjoy life,” she said.

Article link:

By Sarah Schulz?sarah.schulz@theindependent.com | Posted: Sunday, March 2, 2014 9:37 pm

http://www.theindependent.com/news/local/woman-brings-awareness-to-little-known-cancer/article_2c322a24-a285-11e3-8c7a-001a4bcf887a.html


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