Support group deals with the mysteries of multiple myeloma PDF Print E-mail
Written by KAREN NADLER COTA Sentinel Lifestyles Editor   
Saturday, 15 June 2013 08:21
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Inge Lanzenberger, right, leads discussion during the Multiple Myeloma Support Group in Perrysburg. (Photos: J.D. Pooley/Sentinel-Tribune)
PERRYSBURG - Mystery pain. Crushing tiredness. "Funky" bloodwork results.
Each person gathered in the meeting room of Way Public Library on a recent Tuesday afternoon found their way to the Multiple Myeloma Support Group from a different route. Gathered around the table were men and women, in a 30-year span of ages, but all shared one thing.
A sense of urgency.
"We have lost four members of our group to this disease and would greatly appreciate your help in educating others about multiple myeloma and raising awareness," Eunice Tschappat of Portage, herself a registered nurse, told the Sentinel-Tribune. "What we find is that Multiple Myeloma is a cancer that very few people have heard of."
All four deaths occurred from mid-September through December.
"I was tired all the time - great, great fatigue. My rheumatologist was the one who diagnosed me" in 2007, Tschappat recalls.
"I can't even make it through a half day at work," she told him. At the time, she was the office nurse for Dr. Bert Kuebeck, a Bowling Green general practitioner who himself died of a different form of cancer last year.
Right now, her most obvious symptoms are rib and leg pain. Many others in the support group are worse off, Tschappat is quick to point out.
"I have been with the group from the beginning and they all are important people to me."
Sitting across the table from Tschappat is Perrysburg's Thelma Smith, office manager at Way Library for 20 years before she was forced to retire.
"I was sick all the time, no matter what he gave me," Smith recalls. "I'd catch anything."
Frequent visits to her regular doctor yielded no answers for her seemingly continuous parade of illnesses.
By contrast, "I had no symptoms," says Patsy Webb of Toledo. "I went in for my annual physical and my bloodwork wasn't quite right. My doctor said I should see a hematologist," which is a type of oncologist, or cancer doctor. He broke the bad news.
She was one of two people at the meeting wearing a white facial mask due to her compromised immune system, a danger for people with myeloma.
"A lot of chiropractors are picking up on it." Whatever initial pain the patient is complaining of, "it just doesn't get better," noted Tom Dick of Perrysburg, at 56, the youngest person present with the disease.
His first clue that something was amiss was pain that "showed up when I was lifting something on the job. It was caught by my general practitioner."
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Inge Lanzenberger speaks during the Multiple Myeloma Support Group in Perrysburg.
When Dick was diagnosed, in September 2011, he was already at a critical stage.
"I was knocking on the door," he said wryly.
Just a year ago, in June 2012, he underwent a stem cell transplant done at the University of Michigan Hospital in Ann Arbor. At the news that the transplant was "successful," several others in the room cheered.
They know that's not always the case.
Dick continues on low-dose oral chemotherapy.
Monika Lewis of Bowling Green was diagnosed 2 1/2 years ago, and her cancer is now full blown.   
"I had a lesion on my spine which caused the most agonizing pain," Lewis told the group from behind her face mask.
"By the time they know what it is, it's too late. I've had lower back pain for 30 years," so Lewis just figured her array of aches and pains had to be "put down to age." She didn't think anything of it until she felt this new "burning, searing, electrical pain. I woke up on a Monday morning and was numb from the chest down.
"I was told I might not make it. That was when they did the surgery to remove the lesion from the spinal cord."
The surgery was followed by every-three-month checks, eventually reduced to six-months because she was doing so well. But at the very next check, last November, the cancer "decided to explode."
While myeloma has traditionally been called a disease of the elderly, that seems to be changing.
"More people under 65 are getting it," Lewis has discovered. She falls into that cohort.
"We had a young man who lost his fiancee at 32," said group leader Inge Lanzenberger. "There are a couple 20-somethings in the Columbus area," and a pharmacy rep even told her of a 17-year-old myeloma patient.
The rarity of the disease - myeloma represents just 1 percent of all cancers - often means a delay in diagnosis, leading to delayed treatment.
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Eunice Tschappat poses for a portrait. (Photo: Shane Hughes/Sentinel-Tribune)
"If I had not had the spot on my spine I would have put all these other (aches and pains) down to age.  It was not until the cancer reached the spine and caused the severe pain" that Lewis had a clue "something was going on."
The simplest way to describe myeloma is as a cancer of the plasma cells in the bone marrow.
"It is destructive and invades the bone surrounding the bone marrow," said Tschappat.  "It also compromises your immune system greatly.  It is not a cancer that can be removed surgically so you must live with it moment by moment and day by day.  You may achieve remission through a stem cell transplant if all goes well."
Even so, "there is no real cure for this cancer, but it is being managed better with newly developed drugs."
Perrysburg's Herman Lanzenberger is proof of that fact.
"He said I had three months to three years" to live, Lanzenberger says, quoting his doctor's initial pronouncement. "That was 11 years ago."
It was Lanzenberger's wife who stepped forward to form the local myeloma support group in 2011 after the couple searched in vain for a group to join anywhere in this part of the state. They found none closer than Cleveland.
Each month's Perrysburg discussion topics range widely, as the dozen or so people gathered from Findlay up to Toledo share concerns, small successes and big frustrations.
"We have times that we share about things that we're struggling with, like how our kids or spouses are dealing with all of this. So we are very open to discussing whatever is on the hearts of our people.  We have had speakers come from Hospice and also Celgene, a pharmaceutical company that makes many of our drugs," Tschappat offered as examples.
The appalling cost of their drugs is a shared burden.
"One of my meds - we went to Kroger to pick it up and it was $1,400. That was a shock," said Webb.
Another medicine that several of the group members, including Webb, are on costs $13,000 a month.
Most everyone agreed that the response of their families is a paramount concern.
Lewis wondered aloud "what we can do to make this journey easier on our spouses."
After Dick was diagnosed, his daughter, a high school senior, expressed her complicated emotions primarily as anger. "She had a hard time with it."
"I still have one older brother who won't talk about the elephant in the room," Dick admitted.
Among those present were two widows whose husbands have died of myeloma.
"Talk, and communicate," one of the widows advised. "I had to go along to appointments because he wouldn't ask questions."
Dick said he and his wife have both made bucket lists. "Where they were the same, we're working our way though them," checking off the precious experiences one by one.

MORE ABOUT MYELOMA

• Multiple Myeloma is the second most common blood cancer worldwide. According to the International Myeloma Foundation, it is a cancer of plasma cells in the bone marrow, which attacks and destroys bone. It is called “multiple” because the cancer can occur at multiple sites.
• This cancer currently affects more than 100,000 people in the United States, with an estimated 20,000 new cases diagnosed annually and 10,000 losing their battle each year.
• Multiple myeloma represents 1 percent of all cancers and accounts for 2 percent of all deaths.
• Although the causes of MM are uncertain, exposure to pesticides, nuclear radiation, and petrochemicals are considered to be important trigger factors.

• The Toledo Area MM Support and Networking Group meets the third Tuesday of each month from 2 to 4 p.m. at Perrysburg’s Way Public Library at 101 E. Indiana Ave.
The group brings together myeloma patients, caregivers and family members to share experiences on treatments and outcomes. For more information contact Inge Lanzenberger at This e-mail address is being protected from spambots. You need JavaScript enabled to view it
Last Updated on Tuesday, 18 June 2013 09:16
 

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