Multiple myeloma support group hopes to help patients cope, learn about the disease

Jonathan Roberts • Jul 6, 2019 at 5:10 PM

“Knowledge is Power!” Or at least that’s how members of the Northeast Tennessee Multiple Myeloma Support Group go about their lives while living with a disease with a five-year survival rate of just 49.6%.

Multiple Myeloma — which affects 30,000 people in the U.S. every year — is a bone marrow cancer that causes plasma cells to grow too much, forming a tumor. In Northeast Tennessee, an estimated 60 people develop multiple myeloma every year.

Twelve years ago, however, there was little to no way for patients to get information about the disease locally, or interact with other patients and survivors. That is, until Darlene Jessee started the multiple myeloma support group in 2007 after her husband was diagnosed with the disease.

“My husband was diagnosed, and there was just nowhere to get any information,” Jessee said. “It’s like family and you want to learn more and help somebody else. I know how I felt when (my husband) was diagnosed; there was nobody to ask.”

That desire to help others, is what’s kept Jessee involved in the group, even after her husband passed away in 2014.

“You want to be that support for somebody else and it’s so important to learn about the disease and be your own advocate,” she said. “It’s not a disease you want to stand by and not know anything about and let somebody else make the decisions.”

Jessee, of course, isn’t the only one running things for a group that has over 40 members. Barry Darby, who was diagnosed with multiple myeloma in spring 2018, has been involved for over a year now.

“The group helps people with the disease — which I’m one of — and I feel extremely obligated to do my part,” Darby said. “I’m just doing what I should be doing.”

Darby is also one of many members of the group who struggled to get a diagnosis, often being told by doctors it was something entirely different, mostly because diagnosing multiple myeloma is a long, arduous process — one that took Darby five years.

To diagnose the disease, patients have to go through blood and urine tests, as well as a bone marrow biopsy. Now that he’s diagnosed though, his cancer isn’t at the treatment threshold. His multiple myeloma is at the “smoldering” stage, and, according to the American Cancer Society, treatment has little to no effect on mortality rates for those with smoldering multiple myeloma.

Once you hit the active or symptomatic stage though, treatment is often done in a myriad of different ways, as not every person’s disease is the same, something the group’s guest speaker, Dr. Victoria Palau, reiterated during her lecture Saturday afternoon.

Palau, along with a team of research students at East Tennessee State University, have been conducting studies on using plant-based compounds to treat multiple myeloma, which prompted many questions from the three dozen members of the support group in attendance Saturday.

Darby said one of the ‘“most important’ things about having Dr. Palau speak was that she is local  He also pointed to her understanding of multiple myeloma and her ability to answer nearly all questions as a big reason why, and that a lot of the support group members are ‘“extremely interested’ in getting up-to-date information.

The Northeast Tennessee Multiple Myeloma Support Group meets the first Saturday of every month inside the Memorial Park Community Center. For more information, visit http://netn.support.myeloma.org/.

“How do you go through life?” Darby asked himself. “One day at a time, and you enjoy what you got (sic) while you’ve got it — you do what you can do while you can, that’s just how I live life.”

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