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Northeast Ohio grandmother shares brave battle with rare cancer on Rare Disease Day

Sue Giles' type of cancer makes up just 5% of cases of Non-Hodgkin Lymphoma diagnosed each year.
Posted at 7:07 AM, Feb 28, 2023
and last updated 2023-02-28 07:07:16-05

BURTON, Ohio — Feb. 28 officially marks Rare Disease Day.

It's a day that highlights the roughly 350 million people across the world that are affected by a rare disease.

That includes one Northeast Ohio grandmother.

Sue Giles of Burton spent the last several years fighting for her life against a rare form of Lymphoma that she says nearly killed her.

Her type of cancer makes up just 5% of cases of Non-Hodgkin Lymphoma diagnosed each year.

Hope, her family and the health systems in Cleveland, she says, are what got her through the really rough days.

"They light me up. They light my life up," Giles said.

Even when Giles says she was nearing death—the littlest reminders of her children and grandchildren gave her hope.

A coffee mug featuring their photos brings her joy.

"There's my daughter and her kids right after her baby was born," Giles said.

A massive world map on her kitchen wall shows exactly where her kids reside in the states and overseas.

"This is where our son and daughter-in-law live, and daughter and where the kids are in Nairobi, Kenya," Giles said.

As a frequent blood donor, Sue initially noticed an extreme drop in energy and a seismic shift in her health roughly ten years ago.

"I used to give blood all the time, and it got to the point where I wasn't able to give blood because my iron was low," Giles said.

Several appointments and countless tests later with her primary care physician would ultimately determine she had Stage 4 Mantle Cell Lymphoma.

"That's a very scary thing. It's like Stage 4, nobody recovers from Stage 4, but with Lymphoma it's different," Giles said.

Different, but challenging nonetheless.

Sue's kidneys were failing, and her body slowly began shutting down.

She came to the Cleveland Clinic where the aggressive, exhaustive and countless rounds of chemotherapy began.

"It involved about six rounds of treatment with different chemotherapy drugs that were given over about a four-month span, followed then by one very high-intensity chemotherapy treatment with something called a stem cell transplant," Dr. Rob Dean, Cleveland Clinic Staff Physician in the Taussig Cancer Center said.

That stem cell transplant bought Sue roughly four more years of stability.

But it wasn't enough. The cancer returned.

This time doctors tried immunotherapy, but it also did not work as her chest started to fill up with fluid.

"I was heading out. I saw the light and everything. They were working hard to bring me back," Giles said.

Finally, she says there was a degree of hope.

Her doctor suggested CAR T-Cell Therapy, but because of the fluid in her chest, she wasn't eligible for the clinical trial.

Doctors performed a delicate procedure to remove the fluid, and she ultimately was given the go-ahead.

The treatment involved taking Sue's T cells, a type of immune system cell, and changing them in the lab so they will fight off the cancer cells.

Sue's immune system went haywire in the process.

"Sue went through a really difficult time during her hospital stay for the car T-cell treatment. She ended up having to be in the hospital for nearly a month, where the norm for most people nowadays is about a week," Dean said.

Never giving up hope, the procedure was a success, and Sue made it back home to be with her family.

She celebrated her then-50th wedding anniversary with her husband Jay--who still remains her biggest supporter and advocate.

"There's always hope and there's always something coming down the line," Giles said.

She says these rare medical treatments are so important.

She credits her success and road to recovery to the doctors, nurses and staff at the Cleveland Clinic.

She now goes back to Dr. Dean every six months, but she admits it's a journey that has helped her re-define her life and purpose here.