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Strong Women with CLL Lift Each Other Up

Strong Women with CLL Lift Each Other Up
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Published on March 25, 2021

Michele Nadeem-Baker’s Story

To say Michele Nadeem-Baker was shocked to receive a blood cancer diagnosis is no understatement. At the time, her life was going at fast-forward speed. Michele was working globally as the chief of communications for a well-known multi-billion-dollar corporation, with teams running press events and handling crises around the world. She had recently married the love of her life, becoming a stepmom to three wonderful kids. She felt great.

A routine annual blood test revealed something unusual going on with her blood and further tests revealed chronic lymphocytic leukemia (CLL). Michele was stunned. She didn’t fit the profile. CLL is diagnosed more frequently in much older people, most often men around age 70.

“I had no family history, I was very healthy,” Michele said, noting she was able to work long hours and still be a regular at her gym. Active and on the go, she traveled extensively for work and split her at-home time between Boston and Miami, where her company was headquartered. Her schedule kept her going practically 24 hours a day, seven days a week. She found time to exercise but sleep alluded her.

Watch, Wait and Worry

As a former broadcast journalist, Michele was no stranger to researching and getting the story. “I asked a million questions,” she said, explaining her response to receiving a cancer diagnosis.

At first, it was unclear why she wouldn’t be treated right away, but Michele later learned during a second opinion appointment with a CLL specialist that the majority of patients with CLL are not treated until the disease progresses to a later stage. That is the standard of care for CLL. Michele was in her “watch and wait” period, or as oncologists call it, active surveillance, for years before launching into treatment. This can be confusing to a newly diagnosed person who wants to jump right in.

Michele needed answers, literature, a website, something to clear up the mysteries, and she soon realized that if she couldn’t access this information easily, neither could others. Michele didn’t find the support groups she needed, or other CLL patients until she found Patient Power.

“The Patient Power website was the first site I found with credible, patient-friendly information,” she said. Michele reached out to Patient Power’s Andrew Schorr, also a person with CLL, and jumped back into a broadcaster-related role as a host and patient advocate, helping to educate others with the same diagnosis.

Reporting from the Treatment Chair

Michele gave viewers a first-hand account of her experience directly from the treatment chair at Dana-Farber Cancer Institute. Inspired by Robin Roberts of ABC's Good Morning America, who reported on her bone marrow transplant experience, Michele wanted to bridge the gap between patient and patient community.

“I was trying to change the conversation by reporting live from the infusion chair,” Michele said. She provided monthly video updates, published by Patient Power, to show her experience and demystify it for other patients. This was while she received a multi-drug cocktail, delivered intravenously (IV).

One of the most important things to Michele was helping people understand how clinical trials work, like the phase II trial she participated in, emphasizing that patients “are getting tomorrow’s treatment today,” she said. Clinical trials are at the forefront of treatment options these days, offering state-of-the-art treatments. In cancer care, it is not placebo versus real treatment. Michele’s trial was a drug combination trial of two different treatment protocols simultaneously.

Michele is a regular host and contributor on Patient Power, continuing to report news and provide insight into not only CLL but other blood cancers, quality of life issues, common patient concerns, family matters and much more.

Creating Support Groups

March is recognized as Women’s History Month, a time to look back at women who have taken the lead to create the change they wish to see in the world. For Michele, she became the Wonder Woman she needed for the strength to not only endure her cancer journey but to help countless others on theirs.

Watching the Wonder Woman movie, “I got goosebumps during the scene where she goes ahead of the men into battle using her wrist cuffs to deflect bullets,” she said. It was an “aha moment” for Michele because at once she was able to visualize the way her body was deflecting the danger of the CLL cells, harnessing the power of her own immune system along with the treatments she was receiving. She got her strength just when she thought she had run out.

After all, Wonder Woman was “meant to be the strongest, smartest, bravest woman the world had ever seen,” according to Jill Lepore, author of “The Secret History of Wonder Woman.”

“That empowers me,” Michele said.

Her next move was to create a support group.

CLL Women Strong is the group that Michele co-created to help others like her. The group currently meets virtually and is readying for an online presence, both web-based and on social media, to reach a broader audience.

“CLL Women Strong is for dynamic women with CLL who are seeking a community to share their ongoing story, learn from each other and support their blood cancer sisters,” Michele said, noting that she went from being completely silent during her “watch and wait” period, to fully transparent about her journey.

CLL Influencer

Fast-forward to today. Michele is in remission! She gets IVIG therapy monthly to keep her immune system strong and takes time to rest when needed. She continues to advocate for patients living with CLL, using her broadcasting and communications skills to help others as a CLL influencer. She also serves as an FDA Patient Representative, hosting educational programs and speaking at events for various cancer, healthcare, life sciences and patient organizations. She is the lead moderator of the AnCan Blood Cancers Support Group and is active in Connect On CLL Facebook programs.

Like the iconic superhero, Michele continues to open doors for women and speaks the truth on behalf of people with CLL everywhere. You can find her on Facebook, Twitter and Instagram.

~Lauren Evoy Davis

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