By
- Maura Zurick, cleveland.com
Ohio — Becoming a patient changed the way Dr. Catherine Henry thinks about medicine
The retired Cleveland Clinic physician said years of practicing internal medicine taught her that serious illness could be overwhelming. Living through a rare blood disorder herself showed her what that feeling was actually like
“You don’t know how feeling medically overwhelmed feels until it happens to you or somebody you love,” Henry said. “You can only put yourself in somebody else’s shoes so much.”
That perspective came after Henry was diagnosed with AL amyloidosis, a rare blood disorder in which abnormal plasma cells produce abnormal proteins that build up in organs such as the heart, kidneys and nerves. Those protein deposits can eventually lead to organ damage and failure if left untreated
When her first-line treatment stopped working, Cleveland Clinic hematologist Dr. Shahzad Raza fought to secure her a spot in a clinical trial studying an investigational CAR T-cell therapy, a treatment that genetically engineers a patient’s own immune cells to attack the abnormal plasma cells driving the disease. Early trial results have shown deep responses in patients whose disease had continued to progress despite previous treatments
Just months after receiving the therapy, Henry’s test results have exceeded her expectations, giving the 66-year-old Cleveland Heights resident renewed hope — and a new appreciation for life on the other side of medicine
Henry had been monitored for smoldering myeloma, a precancerous blood disorder, since 2016. In 2024, worsening kidney problems led to her diagnosis of AL amyloidosis
She underwent the current FDA-approved first-line treatment for the disease, but doctors soon realized it was unlikely to produce the response she needed
“My first two cycles of treatment, everything was coming down like it was supposed to,” Henry said. “Then it kind of plateaued.”
There were other treatments physicians could try, but Raza believed Henry’s best opportunity was an investigational cellular therapy being studied in a clinical trial
Doctors monitored her blood work weekly, waiting for the moment she met the study’s eligibility requirements
“When I came in to see Dr. Raza … he pretty much told me, ‘You’re an ideal candidate for this study,’” Henry said. “He literally left the room and got on his cell phone to call them.”
Raza contacted the California biotechnology company sponsoring the trial and successfully secured one additional spot after enrollment had closed, making Henry one of the study’s final participants
A difficult disease to diagnose
Raza said AL amyloidosis is one of the most challenging blood disorders to recognize because no two patients present the same way
“The hardest thing about AL amyloidosis is the range of presentations, where no two patients look alike,” he said
Depending on where the abnormal proteins accumulate, patients may develop heart failure, kidney disease, nerve damage, severe fatigue or other symptoms that resemble much more common conditions
“The symptoms are vague and look like far more common conditions,” Raza said. “When the awareness is not there, the diagnosis gets delayed, and that delay is the biggest obstacle we face.”
Many patients see five or more physicians over two to three years before receiving the correct diagnosis, he said
A physician’s new perspective
Although Henry spent years teaching physician-patient communication at Cleveland Clinic, becoming seriously ill gave her a deeper understanding of what patients experience
“I’ve always understood on some level that what’s happening to people medically can be very overwhelming,” she said. “But I didn’t know what it feels like to be overwhelmed like that. Now I do.”
She also found herself paying closer attention to seemingly small details that can have a big impact on hospitalized patients
“The devil really is in the details,” Henry said. “How important little things are to patients.”
She said the experience reinforced how meaningful communication and attention to detail can be for patients who are already overwhelmed by a serious diagnosis
A different kind of treatment
The investigational therapy is a type of CAR T-cell therapy that uses a patient’s own immune cells to fight disease
Doctors first collected Henry’s white blood cells and sent them to a laboratory, where they were genetically engineered to recognize and attack the abnormal plasma cells responsible for producing the harmful proteins. After several days of chemotherapy to prepare her immune system, the modified cells were infused back into her body
“They’re giving me back my own cells that have been genetically engineered to target the plasma cells causing the problem,” Henry said
Although she experienced bone pain and fevers during the chemotherapy that preceded the infusion, Henry said the treatment itself was far easier than many people imagine
“I think people have this idea in their head of cancer treatment that’s centered around chemotherapy,” she said. “What I had is not that.”
After the first few difficult days, she mostly dealt with fatigue
“I actually mostly felt okay,” Henry said. “Nothing I haven’t had much that I couldn’t handle with a nap.”
During her hospital stay, she kept busy knitting, watching downloaded television shows and even observing a pair of peregrine falcons nesting on a nearby Cleveland Clinic building
Encouraging results
Henry now returns for monthly follow-up appointments and receives intravenous immunoglobulin infusions because the treatment significantly suppressed her immune system. She wears a mask in public, avoids crowded indoor spaces and is being revaccinated against diseases she had previously been immunized against
Recent testing found no detectable abnormal plasma cells in her bone marrow
After reviewing those results, Henry said Raza offered simple advice
“He said, ‘Now it’s time for you to go live your life.’”
Henry said she has taken those words to heart
“I have two jobs,” she said. “Live my life and don’t get an infection.”
Why clinical trials matter
Raza said clinical trials are essential for advancing treatment of rare diseases like AL amyloidosis
“Our frontline regimen was a genuine step forward,” he said. “But those same numbers show the gap.”
While current treatment has improved outcomes, many patients either relapse or never achieve a complete response
“In a disease this rare, clinical trials are how we make progress,” Raza said
Raza said early results from the NEXICART-2 trial have been encouraging. According to early data from the study, about 95% of the first 20 patients achieved a complete response, with responses appearing within days. He said no patients who reached a complete response had relapsed at the time those data were reported, though researchers continue to follow participants over time
“A trial can get you a promising therapy years before it is approved,” Raza said. “For someone with relapsed disease, that can be the best option on the table, not a last resort.”
He encourages patients to seek care at experienced amyloidosis centers, ask about clinical trial opportunities and seek second opinions when appropriate
Henry hopes her own experience encourages others facing rare diseases to do the same
She also credits The Gathering Place, a Northeast Ohio nonprofit that provides free programs, education, emotional support and wellness services for individuals and families coping with cancer, with helping her navigate the experience outside the hospital
Looking back, Henry knows her outcome could have been very different had Raza not made one more phone call after the trial had reached its enrollment limit
“I’m very fortunate,” she said
