Multiple myeloma group aims to provide support, information

Camille Wilson wasn’t sure what was wrong with her when she began experiencing pain in the front of her torso, and in her back.

She was sent to a spine surgeon, who did surgery, but also a biopsy, which revealed there was a problem with her blood.

Next, she saw a doctor who diagnosed her with lymphoma — but her son, who is a doctor, urged her to seek a second opinion, and when she did, she was diagnosed and treated for multiple myeloma.

She underwent stem cell transplant, using her own stem cells.

Jim and Camille Wilson host a monthly Multiple Myeloma support group in their home, to help patients who have been diagnosed with the disease. Their support group, which has members from Pasco and Hillsborough counties, is affiliated with the International Myeloma Foundation. (B.C. Manion)

“It was probably 85 percent satisfactory, for the remission,” she said.

She remains on a chemotherapy maintenance program, which does have side effects, she said.

“Sometimes they’re acute. Sometimes, they’re not so bad,” she said. The side effects include rash and itchiness, nausea, leg cramps and neuropathy.

She’s now a four-year survivor of multiple myeloma, a white blood cell cancer that is commonly found in the bone marrow.

“Having this disease is work — to try to keep yourself stable, to keep yourself on top of all of the new things coming out, drugs, therapies, who’s the best doctor to go to,” Camille said.

“I have a primary care physician. I have a primary oncologist, and then I have a myeloma specialist, and that’s what is recommended,” she said.

“The myeloma patient journey is very difficult and can be quite horrific at times,” she said, noting, because she has experienced the challenges, she and her husband, Jim, decided to set up a support group to help others fighting the battle.

“I’ve seen other patients, what they went through, and I felt it was time for me to give back, contribute,” Camille explained.

The group meets on the third Saturday of the month at the Wilsons’ home, 6520 Yellowhammer Ave., in Tampa. The meetings are in the dance studio, Floortime Studio, which is attached to the house.

Meetings generally feature a guest speaker, who addresses issues, such as latest medications, resources that are available and medical questions. Patients, caregivers, family and friends are welcome and there is generally a free lunch, provided by pharmaceutical partners, Camille Wilson said.

The group is affiliated with the International Myeloma Foundation, and the couple travels each year to an annual meeting where they are brought up to speed on the latest information about the disease, and spend time with other support group leaders, sharing what they’ve learned along the way.

“With almost every meeting (we host), we do go around the group and each person gets a chance to speak about their journey,” Camille said.

“We share our experiences,” she said.

They also share information, such as news on medications, clinical trials, sources of financial help and other relevant data.

Newly diagnosed patients often are afraid and overwhelmed by their lack of knowledge about the cancer.

They need a place where they can talk with others who can share what they’ve learned and can relate to their feelings, Jim said.

“They need someone to talk to,” said Jim, the support group’s co-leader.

“Generally, when they leave, they feel so much better. They know they’re not alone. The roundtable sharing part of it is very effective,” Camille said.

Danny Scott, who lives in Wesley Chapel, has been attending the meetings for just about as long as Jim and Camille have been holding them. He goes to two other support groups, as well.

“You’re seeing and talking to other patients with active myeloma,” he said. “Myeloma is a disease where no two patients react, or are treated the same way.”

“You find out things that work for people, which the MDs or the oncologists don’t really know about,” he said.

There are often practical tips that others have discovered, Scott said.

The support is a good source of information from other patients about various approaches that can be helpful, Scott said. They are also can provide useful information for caregivers.

“You at least have the opportunity to seek out and find different opportunities for dealing with your disease,” Scott said, which can include things such as nutritionists, psychiatrists, psychologists and other sources of help.

Much more is known about multiple myeloma than was in the past, Camille said.

“There’s a lot of hope,” Camille added, noting there are many new treatment advances.

The support group draws members from Pasco and Hillsborough counties, Camille said. At its last session, there were 17 people, including members from Zephyrhills, Wesley Chapel and Lutz.

Eventually, Camille and Jim, would like to shift the meeting place to a new location — possibly to a meeting room at St. Joseph’s Hospital-North.

“My husband and I have to set up all of our tables. We’re getting older,” she said. “There might come a day when it won’t be that easy for us to do all of this lugging.

“I’d like to get into a nice meeting room in a medical establishment because we are an educational group for multiple myeloma,” she said. St. Joseph’s Hospital-North is a good location, she said. It has meeting rooms and a restaurant.

Multiple Myeloma support group
When: Third Saturday of the month, from 10:30 a.m. to 12:30 p.m.
Where: Floortime Studio, 6520 Yellowhammer Ave., Tampa
Cost: Free
Details: The North Tampa Multiple Myeloma Educational Group provides information and support to patients who have been diagnosed with multiple myeloma. Friends, family and caregivers are welcome. Generally, there is a program and a free lunch.
Info: Call Camille or Jim Wilson at (813) 624-3872, or email  gro.t1534639104roppu1534639104sfmi@1534639104apmat1534639104htron1534639104.

Multiple myeloma is a cancer of the bone marrow plasma cells, white blood cells that make antibodies. A cancerous or malignant plasma cell is called a myeloma cell. Myeloma is called ‘multiple’ because there are frequently multiple patches or areas in bone where it grows. It can appear as both a tumor and/or an area of bone loss, and it affects the places where bone marrow is active in an adult: the hollow area within the bones of the spine, skull, pelvis, rib cage, and the areas around the shoulders and hips. -Source: International Myeloma Foundation

Symptoms and signs of Multiple Myeloma
Symptoms:

  • Persistent or worsening tiredness due to anemia or reduced kidney function
  • Sudden pain due to a broken bone in the spine, ribs or elsewhere
  • Recurrent unexplained infections, such as pneumonia, sinus or urinary infection

Signs

  • Pain with movement and/or at night/rest
  • Pain tenderness/swelling of bone areas
  • Swelling, shortness of breath or evidence of heart or kidney failure

Source: International Myeloma Foundation

Published May 16, 2018

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