Different strokes: 3 Central New Yorkers share their health crises

BY AMBER SMITH

Anyone can have a stroke.

Three people who did, and who were treated recently at Upstate’s Comprehensive Stroke Center, share their experiences, illustrating how strokes differ.

The people had different symptoms and different treatments.

One is in her 20s. The other two are in their 60s — one with a risk for stroke, and one without. Two are female.

Two made use of telemedicine at smaller hospitals in Rome and Watertown; the other lives in Syracuse and came straight to Upstate.

All three had “ischemic” strokes, 3caused by clots that blocked the blood flow to their brains, but the clots developed for different reasons.

Two were treated with the clot-busting medication tPA, tissue plasminogen activator. One underwent a surgical procedure to retrieve the clot.

All three survived.

A blinding headache

Suzanne Sachetti, 65, of Watertown is retired as an information technology director.

Symptoms

The Sachettis have a lawn tractor. Mark Sachetti remembers that on May 19, 2019, his wife came into the garage saying she was going to mow. She went into the house to use the bathroom first. Twenty minutes later, she still had not returned. He went inside to check on her. Suzanne Sachetti told her husband she had developed a blinding headache, become dizzy and started feeling strange — and now she saw two of him.

“Around that time, there were a lot of stroke commercials on TV,” Mark Sachetti recalls. He recognized the signs of a possible stroke, and he knew what to do. His wife just wanted to rest.

He insisted they get to a hospital. She had trouble walking, but he helped her to the car. They drove to nearby Samaritan Medical Center. “I think she could be having a stroke,” he said as they entered the emergency department.

Care

Upstate neurologist Karen Albright, DO, PhD, evaluated Suzanne Sachetti long distance.

Upstate neurologist Karen Albright, DO, PhD,
evaluated Suzanne Sachetti long distance.

After a computed tomography (CT) scan, Sachetti was put in a room with a telemedicine connection to the Upstate Comprehensive Stroke Center. Neurologist Karen Albright, DO, PhD, appeared on the screen. “Dr. Albright took control,” recalls Mark Sachetti. To him, his wife looked fine. Albright was not convinced.

After examining Suzanne Sachetti, looking at the scans and talking with the emergency doctor, Albright told the Sachettis she believed Suzanne Sachetti was having an ischemic stroke, caused by a clot. She told them about tissue plasminogen activator, or tPA, a clot-busting medication that can be effective if given early in the course of a stroke. It can also cause bleeding. That was a risk the Sachettis were willing to take.

Soon after she received the medication, Sachetti was transported by ambulance to Upstate. She stayed in a room in the neurological intensive care unit. “All of those nurses and all of those doctors, they treated her very well, and they knew what they were doing,” Mark Sachetti recalls. He brought his wife home three days later.

Cause

Both of Sachetti’s vestibular arteries — the major arteries in her neck — were blocked. Some plaque broke off in one of them and traveled through the bloodstream until it blocked an artery in the cerebellum. That is the section of the brain that controls speech and balance. Strokes in this area can be devastating. Mark Sachetti says he realizes connecting with Albright so quickly for treatment made a big difference in his wife’s recovery.

Recovery

Sachetti has some cognitive and short-term memory issues, her husband says, but physical therapy has helped improve her dizziness and balance.

Debra Born, 25, had a stroke in the middle of the night. Her difficulty speaking helped her father realize he needed to call 911. (photo by Susan Kahn)

Debra Born, 25, had a stroke in the middle of the night. Her difficulty speaking helped her father realize he needed to call 911. (photo by Susan Kahn)

Nauseated and dizzy at 4 a.m.

Debra Born, 25, is a new graduate of Utica College with a public relations degree. She lives north of Rome.

Symptoms

Born awakened feeling off about 4 a.m. on Aug. 6, 2019. She was nauseous and extremely dizzy. “I thought I was just exhausted and figured that was why I could not move. I kept trying to say that I was fine, but I had a hard time talking.”

Her father, Frank Born, says it’s fortunate she couldn’t speak. “She was trying to tell us, ‘I’m OK. Just let me sleep.’ And we might have.”

Instead, he dialed 911.

Care

An ambulance brought Debra Born to the hospital closest to her home, Rome Memorial Hospital. The physician in the emergency department, via a teleconference with stroke specialists at Upstate, arranged for a helicopter to fly Born to Upstate University Hospital in Syracuse.

She had a blood clot in her brain that was swiftly removed by Hesham Masoud, MD, an interventional neurologist with specialization in vascular neurology and endovascular surgical neuroradiology. Eighty percent of strokes are caused by clots, when an artery that feeds the brain becomes blocked. The other main type of stroke happens when a vessel bursts and bleeds. The treatment options are different for each type of stroke, and care is tailored to each patient based on the size and location of the clot or bleed, and the patient’s condition and medical history.

Cause

Masoud explains that Born’s stroke developed from an arterial dissection, a small tear in the lining of an artery at the base of her neck. This likely happened when the artery rubbed against her vertebrae, perhaps when she lifted something heavy or twisted in a certain way during physical activity. A clot developed, which caused an ischemic stroke when it obstructed blood flow to the brain.

Recovery

The clot retrieval is performed in an operating suite, using micro catheters (tubes) and X-ray guidance. Born was feeling back to normal within hours of the procedure. When Masoud came to her bedside, she remembers, “he was thrilled to see how well I was doing.”

She was hospitalized overnight and able to go home the next day, with no lingering deficits from her stroke. Born says she appreciates the prayers of loved ones. “The skill of Dr. Masoud and my whole stroke team was impressive, and I am grateful to them for doing their best to ensure that I walked away alive and well.”

Stroke survivor Leonard “Larry” Johnson, 67, lost the use of his arm as he experienced a stroke. (photo by Robert Mescavage)

Stroke survivor Leonard “Larry” Johnson, 67, lost the use of his arm as he experienced a stroke. (photo by Robert Mescavage)

‘I can’t use my arm’

Leonard “Larry” Johnson, 67, of Syracuse, is a retired truck driver and construction worker.

Symptoms

He wasn’t feeling good the whole week. That Friday, Nov. 8, 2019, watching ESPN on television, Johnson hit the bed with his right arm. His fiancée, Karla Rosen, thought he was excited about whatever game he was watching. Then he tapped her. That got her attention. “I can’t use my arm, I can’t use my arm,” he muttered. “I feel funny.”

Rosen remembers Johnson’s lips weren’t working right, his words were slurred, and his left side was weakened.

She called 911.

Because Johnson has congestive heart failure, the couple is used to making trips to the hospital emergency department. “The doctor asked me, ‘How did you know to act so quickly?’ He said that’s what saved his life, why he was able to bounce back so quickly,” Rosen says. “I thought this had something to do with his heart. I didn’t think of stroke until we got to the hospital.”

Care

Johnson underwent a computed tomography scan that revealed a clot on the right side of his brain. Neurologist Hesham Masoud, MD, ordered a thrombolytic medication called tissue plasminogen activator, or tPA, which dissolves clots when administered in the early stages of a stroke.

Cause

A person with congestive heart failure has an increased risk of stroke. Because the heart does not pump with optimal force when it’s in congestive heart failure, blood may stagnate in one of the chambers of the heart. This can create circumstances for a clot to form, which may eventually travel to the brain and cause a stroke, Masoud explains.

In addition, people with heart failure can also have an irregular heart rhythm called atrial fibrillation that increases the risk for stroke.  

Recovery

Johnson went home after three days at Upstate University Hospital. Rosen says he’s not 100 percent back to himself, yet. “He’s got to go to physical therapy,” she says. “We were really blessed that he was able to bounce back.”

Upstate Health magazine winter 2020 issue coverThis article is from the winter 2020 issue of Upstate Health magazine.

 

 

 

 

 

 

Posted in brain/neurology, emergency medicine/trauma, health care, patient story, stroke, technology | Tagged , | Leave a comment

A life-changing drug: Patients see improvement of cystic fibrosis symptoms

Brittnee Farmer and her fiance, Brian Cooney, are grateful for the dramatic improvement in her health, thanks to three pills a day. (photos by Robert Mescavage)

Brittnee Farmer and her fiance, Brian Cooney, are grateful for the dramatic improvement in her health, thanks to three pills a day. (photos by Robert Mescavage)

BY AMBER SMITH

Brittnee Farmer, 31, is planning her wedding. She worries that the big day will be marred by her nebulizer, the machine she uses to inhale medication in a fine mist.

Farmer was a preschooler when she was diagnosed with cystic fibrosis. Because of the genetic disorder, thick mucus accumulates in her lungs, causing Farmer to cough — and to seek relief from her nebulizer.

She really wants to enjoy her wedding day without the machine.

She gets teary-eyed now, thinking that may be possible.

Farmer is one of the first cystic fibrosis patients at Upstate to start taking a newly approved CF medication for those age 12 and older called Trikafta. Within the first two weeks on the regimen — two pills in the morning and one at night — Farmer no longer feels short of breath when she awakens in the morning. She no longer jumps out of bed to run to her nebulizer.

“It’s like I got a new body,” she says. “It’s like I returned a defective one and got a new one.

“It’s very much a life-changing drug for me.”

It’s the first therapy that successfully targets the genetic root of CF rather than just alleviating symptoms.

Farmer with her health care team, from left: Christopher Fortner, MD, PhD; nurse Ashley Waterman; and Sumendra Joshi, MBBS.

Farmer with her health care team, from left: Christopher Fortner, MD, PhD; nurse Ashley Waterman; and Sumendra Joshi, MBBS.

Christopher Fortner, MD, PhD, medical director of the cystic fibrosis program at Upstate, says one of the first things patients notice when taking the new drug is an improvement in how they feel. “Most of them told me they coughed out a lot of mucus the first few days after starting Trikafta, but then their cough went almost completely away,” he says. “For some of them who have coughed almost every day they can remember, this is a huge improvement.”

He says during clinical trials of Trikafta, patients completed surveys that gave symptom scores based on mucus production, congestion, cough, wheezing and shortness of breath. This score improved by about 20 points for people who had never taken a modulator before. Symptoms improved, and so did their measurable lung function and the amount of chloride in their sweat.

Trikafta is not a cure for CF.

If patients stopped taking the drug, Fortner predicts their mucus would become thick again, their cough would return and their lung function would drop. “But taking Trikafta as directed by their CF doctors will help their CF protein work much better and may minimize both the symptoms of CF and the progression of the disease.”

The hope is that Trikafta can help turn CF into a chronic disease, like diabetes. 

HealthLInk on Air logo(Hear Christopher Fortner, MD, PhD, describe the promise of the cystic fibrosis drug Trikafta in a podcast interview with Upstate’s “HealthLink on Air.”)

The life expectancy for someone born with CF today is, on average, 44 years. Trikafta could change that. “I think it’s going to improve the life expectancy by a lot,” says Fortner. “It could really have a dramatic improvement not just for how long they’ll live, but for living more days without symptoms and feeling better.”

That’s been Farmer’s experience since starting Trikafta in November.

Farmer met her fiancé on a Myrtle Beach vacation. Their romance continued long distance until Farmer moved from Charlottesville, Va., to be with Brian Cooney near Utica. Her move meant finding new doctors.

“My first appointment at Upstate, I felt more comfortable than I ever had with my team in Virginia, and I had been there my whole life,” she says. She told her doctor, “I feel like I am just getting my diagnosis. There is so much that you are telling me that I did not know.”

She was 4 when she was diagnosed, but she remained active, playing with cousins, competing on the swim team, cheerleading. Her mom and dad helped her learn how to live with her condition, but Farmer says, “It was never really like a disability. I didn’t share the fact that I had CF with a lot of people, just because I wanted people to know me.”

She coughed a lot. She used a nebulizer first thing every morning, and throughout the day. She took enzymes before meals to help her body absorb nutrition.

She heard about a new medication in development that could, potentially, improve the lives of people with CF, but she did not get her hopes up.

Then, when she relocated to Central New York and began receiving care at Upstate, she learned she was a candidate for the drug that has changed her life.

Farmer and Cooney plan to be married in October. And Farmer doesn’t expect to need her nebulizer to get through the day.

About Trikafta

Trikafta, the cystic fibrosis medication.

Trikafta, the cystic fibrosis medication.

To understand how the new CF medication works, you first have to understand the role of the cystic fibrosis transmembrane conductance regulator protein, or CFTR protein. This protein forms a tiny channel, or tube, that allows chloride to flow across the cell membrane, allowing water to move from one side of the cell layer to another. Without this protein, sweat is too salty, mucus in the airways is too thick and sticky, and similar problems occur in the pancreas, intestines and sinuses.

About 90% of CF patients have at least one CFTR genetic mutation, which causes problems in the channel formation. The protein doesn’t fold correctly into a tube; the cells reject that misfolded protein and won’t send it up to the top of the cells, where it needs to be in order to let chloride move across the membrane.

Two of the ingredients in Trikafta help the protein fold well enough to form a tube. But even if the protein folds into a good enough tube to be sent to the cell surface, the ends of the tube are closed and won’t let chloride through. The third ingredient in Trikafta helps keep the tube open.

“With these three ingredients working together, the CF protein works better, but still not as good as a CF protein with no mutations,” explains Christopher Fortner, MD, PhD, the medical director of the cystic fibrosis program at Upstate.

Trikafta is not designed to treat people with CF who do not have a CFTR mutation. Fortner notes that a huge research push is underway to find therapies for those patients.

Upstate Health magazine winter 2020 issue coverThis article is from the winter 2020 issue of Upstate Health magazine.

 

Posted in drugs/medications/pharmacy, genetics, health care, lung/pulmonary, patient story | Tagged , | Leave a comment

Up Close: A state-of-the-art mass spectrometer

Close-up of the mass spectrometer’s nanospray ionization source, where molecules are converted into ions — a critical step in their detection. (photo by William Mueller)

Close-up of the mass spectrometer’s nanospray ionization source, where molecules are converted into ions — a critical step in their detection. (photo by William Mueller)

Bruce Knutson, PhD

Bruce Knutson, PhD

A $1.1 million grant from the National Institutes of Health helped Upstate Medical University purchase one of the most advanced ultra-high performance mass spectrometers available today. The new machine allows researchers to make further advances in the fields of structural and quantitative proteomics and metabolomics and drug discovery.

Mass spectrometers are used to make chemical analyses by producing charged particles, also known as ions, from chemical substances. It then uses electric fields to measure the weight of the charged particles, which researchers say is important in helping to identify and distinguish the ions or mole from other molecules.

Ebbing De Jong, PhD

Ebbing De Jong, PhD

A key feature of Upstate’s new mass spectrometer is its versatility and speed. This model has a faster scanning speed than previous models, allowing for more in-depth analysis of a sample, thereby maximizing the data obtained for a single sample and the number of samples that can be analyzed in a given amount of time.

“This is a game-changer for us on the research front, as it will also allow us to train future generations of research technicians and introduce postdoctoral fellows and graduate students to the latest biomedical mass spectrometry applications in the area of proteomics, metabolomics and diagnostics,” says Bruce Knutson, PhD, assistant professor of biochemistry and molecular biology.

Cancer Care magazine fall 2019 issue coverThis article appears in the fall 2019 issue of Cancer Care magazine.

Posted in health care, research | Tagged

Recipes: Kale, Butternut Squash and Pomegranate Salad; Pumpkin Spice Overnight Oats

kaleKale, Butternut Squash and Pomegranate Salad

Ingredients

1 large butternut squash (about 3 pounds), peeled, cut into 3/4-inch cubes

1/4 cup olive oil, divided

5 cloves garlic

1/2 teaspoon turmeric

1/4 teaspoon salt

Freshly ground black pepper

1/2 cup chopped walnuts (can also use pumpkin seeds or sliced almonds)

2 large bunches (about 2 pounds total) Tuscan kale, stemmed

and thinly sliced

1/4 cup fresh lemon juice (from 1 large lemon), divided

Sea salt

1 tablespoon apple cider vinegar

1 teaspoon pure maple syrup

1 tablespoon Dijon mustard

1 shallot, finely chopped

1 cup pomegranate seeds (from 1 large pomegranate)

Nutritional information per serving

200 calories

11 grams total fat

23 grams carbohydrates

5 grams protein

4 grams fiber

105 milligrams sodium

Preparation

Preheat oven to 400 degrees. Place cubed butternut squash on baking sheet; drizzle 1 teaspoon olive oil over the top. Add whole garlic cloves, turmeric, and salt and pepper. Toss to evenly coat the butternut squash with oil and spices. Spread butternut cubes evenly around pan and roast for 30 to 40 minutes, until squash is fork tender.

While the squash is roasting, heat 1 teaspoon olive oil in a small skillet over medium-high heat. Add walnuts and cook, stirring occasionally, until they are just golden brown, 2 to 3 minutes. Set aside.

Prepare the kale by slicing it into thin strips. Add the 2 tablespoons lemon juice and a pinch of sea salt and massage into kale to wilt. Set aside. (Note: if you are prepping the day ahead, only add the lemon and massage the kale the day it’s served.)

When the squash and garlic are done roasting, remove the garlic pieces and add them to a medium bowl or food processor. Add the remaining olive oil, lemon juice, apple cider vinegar, maple syrup, Dijon mustard and shallot; whisk or pulse until smooth.

In a large mixing bowl, combine kale with about 3/4 of the dressing and toss until kale is lightly coated. Add more dressing to taste and reserve any leftover for another use.

Add roasted squash and pomegranate seeds to the kale; toss to combine. Transfer to a serving bowl and top with toasted walnuts. Makes 8 servings.

Source: American Institute for Cancer Research

pumpkinPumpkin Spice Overnight Oats

Ingredients

1/2  cup rolled oats

1/2 cup unsweetened almond milk

1/3 cup plain Greek yogurt

1 tablespoon ground flaxseed

2 tablespoons pumpkin puree

1 tablespoon maple syrup

1/2 teaspoon vanilla extract

1/2 teaspoon ground cinnamon

1/4 teaspoon ground ginger

1/4 teaspoon ground nutmeg

Pinch of salt

Nutritional information per serving

330 calories

7 grams fat

50 grams carbohydrates

17 grams protein

8 grams dietary fiber

280 milligrams sodium

Preparation

Stir together all ingredients in a medium-sized bowl. Add to a Mason jar with a fitted lid. Refrigerate and store overnight. Makes 1 serving.

Source: American Institute for Cancer Research

Cancer Care magazine fall 2019 issue coverThis article appears in the fall 2019 issue of Cancer Care magazine.

Posted in cancer, health care, recipe

Subtle symptoms: Her ovarian cancer required surgery and chemotherapy

A two-year survivor of stage 3 ovarian cancer, Aimee Derbyshire is thankful for her family and friends, her Eastwood neighborhood and the care she received from Mary Cunningham, MD, and her staff. (photo by Robert Mescavage)

A two-year survivor of stage 3 ovarian cancer, Aimee Derbyshire is thankful for her family and friends, her Eastwood neighborhood and the care she received from Mary Cunningham, MD, and her staff. (photo by Robert Mescavage)

BY AMBER SMITH

She’s 52 and still alive, so Aimee Derbyshire feels as if she had survived a family curse. She lost a great-grandmother, grandmother, mother, aunt and sister to various cancers, each before they turned 50.

“Bald is beautiful” was Derbyshire’s response to temporary hair loss caused by chemotherapy. (provided photo)

“Bald is beautiful” was Derbyshire’s response to temporary hair loss caused by chemotherapy. (provided photo)

Derbyshire and another sister are survivors.

She credits gynecologic oncologist Mary Cunningham, MD (see below). This January, Derbyshire will mark two years of remission from ovarian cancer.

It was the end of July 2017 when Derbyshire was struck with belly pain so severe that she went to the hospital. Hours later, a doctor gave her the news: On her ovary was a growth the size of a tennis ball.

She left with an appointment to see Cunningham.

“Everything moved very quickly,” she recalls. Surgery to remove the tumor was Aug. 9. A few weeks later she began chemotherapy, which ended on Jan. 3, 2018.

Today she follows up with Cunningham every four months.

“I’m just grateful to be alive,” Derbyshire says. “She’s a wonderful doctor. She cured me.”

ovary diagramOvarian cancer facts

Overview

Ovarian cancer starts in a woman’s reproductive glands, known as the ovaries. Most ovarian cancers are made up of epithelial cells, which cover the outer surface of the ovary, but some originate from germ cells or structural tissue cells.

Some ovarian tumors are benign. Those that are malignant may spread (metastasize) to other parts of the body.

Ovarian cancer is rare in women younger than 40. About half of the women who are diagnosed with ovarian cancer are 63 years or older.

About 20 percent of ovarian cancers are found at an early, more treatable stage, but most ovarian tumors are difficult or impossible to feel during a medical exam.

Symptoms

The most common symptoms are bloating; pelvic or abdominal pain; trouble eating or feeling full quickly; and feeling as if you need urinate

frequently or urgently. See your medical care provider if you have these symptoms almost daily for more than a few weeks.

Symptoms may also include fatigue, upset stomach, back pain, pain during sex, constipation, heavy or irregular menstruation and abdominal swelling with weight loss.

Risk factors

Factors that may increase a woman’s risk for developing ovarian cancer: a personal history of breast cancer; a family history of ovarian, breast or colorectal cancer; being overweight or obese; having a first child after age 35 or never carrying a pregnancy to term; taking estrogen therapy after menopause; and – potentially – using fertility treatment with in vitro fertilization.

Factors that appear to lower a woman’s risk for ovarian cancer: each full-term pregnancy; carrying a baby to term before age 26; breastfeeding; the use of oral contraceptives; tubal ligation or short use of intrauterine devices; and a hysterectomy, a surgical procedure to remove the uterus.

Diagnosis

A variety of tests may be recommended in order to diagnose ovarian cancer. An ultrasound uses sound waves to produce a picture of the ovaries. Computerized tomography scans or X-rays take pictures of the ovaries or other parts of the body.

Laparoscopy allows a doctor to look at the ovaries and other nearby body parts. Blood tests can also be used as tumor markers.

A biopsy of ovarian tissue — usually done when the tumor is removed during surgery — is the only way to confirm cancer.

Treatment

Surgery is the main treatment, but depending on the type and stage of ovarian cancer, some women may need other treatments before or after surgery, or both. That usually includes chemotherapy.

Source: American Cancer Society

GYN Oncology of CNY joins Upstate

Mary Cunningham, MD

Mary Cunningham, MD

Douglas Bunn, MD

Douglas Bunn, MD

Mary Cunningham, MD, and Douglas Bunn, MD, of GYN Oncology of CNY have  joined Upstate’s department of obstetrics and gynecology and offer services through the Upstate Cancer Center.  The practice is the area’s leading provider of comprehensive care for women with gynecologic cancers.

Bunn and Cunningham will see patients at the Madison Irving Medical Center, 475 Irving Ave., Syracuse.

“Patients will have access to more clinical trials and additional support services, says Cunningham.

They offer a range of diagnostic and therapeutic options for women with ovarian, uterine, cervical and other gynecologic cancers, including radical surgery, radiation, chemotherapy and newer treatments such as immunotherapy and robotic sentinel node dissection. Nutritional and psychological counseling and genetic testing are also available.

Upstate participates in the National Cancer Institute’s cooperative trial group, NRG Oncology, providing  patients with local access to the latest developments in therapy and access to national clinical trials.

With this move, Cunningham and Bunn join Rinki Agarwal, MD, as physicians in Upstate’s Division of Gynecologic Oncology.

To request an appointment, call 315-464-HOPE (4673).

Cancer Care magazine fall 2019 issue coverThis article appears in the fall 2019 issue of Cancer Care magazine.

Posted in cancer, chemotherapy, health care, patient story, surgery, women's health/gynecology | Tagged

 Living his life: He worked treatment for non-Hodgkin lymphoma into his college schedule

John Hrbac, center, with his pediatric oncologist, Jodi Sima, MD, left, and his surgeon, Tamer Ahmed, MD, right. (photos by Susan Kahn)

John Hrbac, center, with his pediatric oncologist, Jodi Sima, MD, left, and his surgeon, Tamer Ahmed, MD. (photos by Susan Kahn)

BY AMBER SMITH

John Hrbac is a junior at George Washington University. He travels the East Coast with the school’s debate team. Over the summer he visited Europe. He’s studying for the law school admission test. At 21, the young man from Manlius is living the kind of life he envisioned.

“He’s happy, and healthy,” says his mom, Maha Hrbac, before adding, “I hope.”

Once a month Hrbac sits for an infusion of an immunotherapy medication to help his body’s immune system fight non-Hodgkin lymphoma.

Hrbac was diagnosed between his freshman and sophomore year of college. He had surgery, chemotherapy and radiation therapy. When tests showed that some cancer remained, his doctor proposed the immunotherapy drug pembrolizumab, sold under the trade name Keytruda.

His mother says it seems to be working. “It’s slowly deteriorating the cancer.” Hrbac feels fine. He’s going on about his life. Every three months he returns to Upstate for a checkup and scans to monitor the drug’s success.

How it started

Hrbac’s medical crisis began with general fatigue around Thanksgiving 2017. Being his first semester of college, he thought it was normal to feel so tired. Then, starting in December, every once in a while he’d feel a pinch on his heart. Intense shoulder pains began in January, but Hrbac thought he’d pulled a muscle or slept wrong.

He went skiing with friends during spring break in 2018 and wound up at an urgent care clinic with chest tightness and shortness of breath. “They told me that my muscles were inflamed and to just take painkillers. That was around the time my night sweats started,” Hrbac says.

By early May Hrbac started coughing up blood. Something wasn’t right, he knew. But because he didn’t have a doctor in Washington, D.C., he decided to wait and see his doctor as soon as he got home after finals.

“At first they thought it was either pneumonia or a blood clot. They did X-rays. They immediately called me and said I had to come and get a computerized tomography scan. When they called me for the CT, I knew it was something bad,” Hrbac recalls.

His primary doctor called him with the results. A tumor the size of a misshapen orange was growing in his chest.

John Hrbac

John Hrbac

Diagnosis and treatment

Hrbac underwent additional scans and a biopsy to get the diagnosis of non-Hodgkin lymphoma, a cancer that starts in the white blood cells. Specifically, he had mediastinal large diffuse B-cell lymphoma, an aggressive form that would need prompt treatment.

Upstate pediatric oncologist Jody Sima, MD, became his doctor.

“She saved my son,” Maha Hrbac says emphatically.

“John’s tumor was so large that it had stuck to the side of his left lung. It was pushing on his lung, airway and heart. It was constricting his main arteries, and the blood flow and his airway,” she recalls. “His health was deteriorating, to the point that he couldn’t walk down the hallway. He could only sleep sitting up at about 55 degrees. If he lay down, he couldn’t breathe because of the tumor.”

Sima admitted Hrbac to the Upstate Golisano Children’s Hospital, on the 11th floor, cared for by nurses and technicians his mother describes as angels. Surgeon Tamer Ahmed, MD, installed a port for the administration of chemotherapy medications, and Hrbac underwent five days of continuous chemotherapy before going home. Every two and a half weeks, he would return for five additional rounds of chemotherapy.

During her son’s first hospitalization, Maha Hrbac was a wreck. She stayed by his side. In the middle of the night, she stirred when a nurse came in to check Hrbac’s vital signs while he slept. The nurse then adjusted his blanket to tuck him in. That gesture meant so much to Maha Hrbac. She hurried to the hallway to hug the nurse and thank her for taking such care with her son.

The treatment was not fun, but Hrbac told his mom, “A little part of me was always happy to come back to the floor because I knew I would get to see everyone.”

The six rounds of chemo continued over the summer and into the start of his sophomore year at George Washington, where professors were understanding. At the conclusion, he returned to Upstate for follow-up scans. Sima had to tell him the bad news that the cancer wasn’t gone.

What next

Hrbac underwent 20 days of radiation during winter break — which also didn’t get rid of all the cancer.

Sima investigated options.

Many patients in his position undergo high-dose chemotherapy and a bone marrow transplant. “That is the traditional therapy,” Sima says, “however, it’s not very effective.”

As it turned out, Hrbac’s tumor contained some specific markers indicating that a new type of immunotherapy might work.

Sima met with Hrbac and his family. She said Keytruda was working well for some patients with lung cancer.

It was still early, but success was also being seen in some patients with non- Hodgkin lymphoma who were taking the immunotherapy drug. It might be worth trying.

“We were like, ‘What have we got to lose?’” Maha Hrbac remembers.

So, for the spring of her son’s sophomore year, every three weeks she would drive six hours to pick him up from school after classes on Thursday. He had no classes on Friday, so that’s when he would get his Keytruda infusion at Upstate. Then they would drive back to Washington, D.C., so he could be in class Monday.

She would, of course, do it all over again if she had to.

Keeping things normal

Sima knew how important it was to Hrbac to be able to keep living his life.

“I didn’t want it to stop me from living a normal life. I tried my hardest to keep life going,” he says. “Everyone told me to take this semester off, but I didn’t want to. It took a lot of strength, obviously. There were a lot of days I didn’t want to. But I didn’t want to put everything on hold for four months.”

Hrbac’s advice to anyone in a similar situation: Try to keep things normal. “Just keep going with it. That’s how I got through it. At the end of the day, the mental aspect was the hardest part.”

Now, Maha Hrbac’s son is a junior in college. He’s technically cancer free. But he undergoes the immunotherapy infusions once a month. The medication comes in a plastic bag about the size of a coin purse. It infuses into his arm through an intravenous line slowly.  “In an hour, he’s done,” she says, “and he goes on his merry way.”

What is immunotherapy?

One reason cancer cells thrive is because they have the ability to hide from the body’s immune system. The medication Hrbac takes, pembrolizumab (Keytruda), is an immune checkpoint inhibitor designed to prevent cancer cells from hiding from the immune system’s T cells. This allows the T cells to recognize and attack the cancer cells.

Some immunotherapies boost the body’s immune system in a general way. Others help train the immune system to attack cancer cells specifically. Some types of immune therapies are made using the patient’s own immune cells.

Different immunotherapies work on some types of cancers better than on others. Some are used alone, and some work best when paired with another therapy.

The goal is generally to stop or slow the growth of cancer cells or to stop cancer from spreading to other parts of the body.

Source: American Cancer Society

Cancer Care magazine fall 2019 issue coverThis article appears in the fall 2019 issue of Cancer Care magazine.

Posted in blood/blood-related conditions/hematology, cancer, chemotherapy, health care, immunotherapy, patient story, surgery, Upstate Golisano Children's Hospital/pediatrics | Tagged

Noah, a young cancer patient, thinks he’s famous

Noah Axtell, standing by a poster showing him with Upstate pediatric cancer specialist Irene Cherrick, MD. (provided photo)

Noah Axtell, standing by a poster showing him with Upstate pediatric cancer specialist Irene Cherrick, MD. (provided photo)

The kids and the doctors you see on Upstate Medical University banners and billboards are real kids and real doctors.

Meet Noah Axtell, who is now 7.

Maybe you saw him on a billboard, or on a banner hanging inside Destiny USA mall. He’s grinning, next to Irene Cherrick, MD, the pediatric oncologist who takes care of him.

Noah is a second-grader who lives near Sylvan Beach with his mom, Tonia; dad, Jesse; and older sister, Xenia.

When he was 3 years old, Noah began saying his neck hurt. His stomach was becoming distended. Tonia Axtell says she knew something wasn’t right. At Upstate’s pediatric emergency department, she says doctors discovered a rare kind of kidney cancer called a Wilms tumor growing on his kidney.

Noah underwent chemotherapy at the Upstate Cancer Center to help shrink the tumor before having surgery to remove the tumor and one of his kidneys.

Afterward, he underwent radiation and more chemotherapy.

Axtell says her son is healthy now. He still sees Cherrick every six months.

It was after a visit to see her that Axtell stopped with Noah at the Syracuse mall before returning home. A friend told her about the banner, and Axtell wanted to show Noah.

Looking at the photo she took of him in front of his banner, she says, “He very much thinks he’s famous.”

Cancer Care magazine fall 2019 issue coverThis article appears in the fall 2019 issue of Cancer Care magazine.

 

 

 

Posted in cancer, chemotherapy, health care, kidney/renal/nephrology, patient story, surgery, Upstate Golisano Children's Hospital/pediatrics | Tagged , ,

Teamwork: For 20 years, multidisciplinary approach boosts lung cancer survival rates

 

The TOP (lung cancer) team includes, from left: Jeffrey Bogart, MD, radiation oncology; Terri Harrington, RN; Carolyn Walczyk, tobacco treatment counselor; Ernest Scalzetti, MD, radiology (seated); Michael Archer, DO, thoracic surgery; Manju Paul, MD, pulmonology; Stephen Graziano, MD, oncology (seated); Erin Bingham, clinical research associate; Jason Wallen, MD, thoracic surgery; Mark Crye, MD, thoracic surgery; Leslie Kohman, MD, director emerita (seated); Michael Mix, MD, radiation oncology (seated); Heather Smith, RN; and Ginger Cowan, NP. (photo by Susan Kahn and William Mueller)

The TOP (lung cancer) team includes, from left: Jeffrey Bogart, MD, radiation oncology; Terri Harrington, RN; Carolyn Walczyk, tobacco treatment counselor; Ernest Scalzetti, MD, radiology (seated); Michael Archer, DO, thoracic surgery; Manju Paul, MD, pulmonology; Stephen Graziano, MD, oncology (seated); Erin Bingham, clinical research associate; Jason Wallen, MD, thoracic surgery; Mark Crye, MD, thoracic surgery; Leslie Kohman, MD, director emerita (seated); Michael Mix, MD, radiation oncology (seated); Heather Smith, RN; and Ginger Cowan, NP. (photo by Susan Kahn and William Mueller)

This is one of a series of articles focusing on lung cancer.

BY AMBER SMITH

Upstate debuted its Thoracic Oncology Program20 years ago. It’s defined by a multidisciplinary team approach — which other medical providers at the Upstate Cancer Center have since adopted — and which has been shown to significantly boost a patient’s survival.

A multidisciplinary team is comprised of specialists from multiple disciplines who collaborate on the care of individual thoracic oncology patients. Team members include medical, surgical and radiation oncologists, pathologists, imaging specialists, pulmonary specialists, nurse practitioners with specialized training, nutritionists, social workers and patient navigators.

cancer care comparison chart

It’s a big team. But they’ve got a big table in a big conference room where they gather every week. Typically the team discusses care for six or eight new patients, along with up to 20 brief updates on established patients.

Contrast the team approach with “traditional care,” which is serial and not so coordinated: A primary care doctor whose patient has an abnormal chest X-ray may refer that patient to a pulmonologist, who may then send him or her to a surgeon or to an oncologist. Each specialist may not know (or agree with) what the other recommends.

HealthLInk on Air logo(Hear Leslie Kohman, MD, discuss how the Thoracic Oncology Program helps patients dealing with lung cancer.)

“Most of us feel that complicated decisions on cancer care should not be made by a single doctor,” says Jason Wallen, MD, the medical director for the Thoracic Oncology Program. The team approach means every patient has every option open for discussion. “It’s kind of like getting eight or 10 second opinions all at once.”

For doctors, the team meetings “ensure that we’re always learning,” Wallen says.

With the rapid pace and volume of medical research, it can be difficult for one doctor to keep up on every detail. Regular collaboration among such a large group of experts means everyone shares information from his or her own field, Wallen says. “So we all grow, and I think that allows us to provide even better care to patients as time goes on.”

Such team care is natural at an academic medical center, where doctors and caregivers are encouraged to seek input from one another.

The Stony Brook Cancer Center follows a multidisciplinary approach with its lung cancer patients, too — and officials there have found that patients live longer because of it.

Examining data from 2002 to 2016, Stony Brook officials compared the care of 4,000 patients, about half receiving multidisciplinary care and half receiving traditional care.

They found the team approach has a 30% survival advantage over standard care.

“There is near universal interest in deploying multidisciplinary structures of care to improve outcomes in lung cancer, but to date implementation of such models has been slow because of the lack of supporting data,” says Thomas Bilfinger, MD, director of Stony Brook’s Lung Cancer Evaluation Center. “Our findings show that outcomes are improved with a multidisciplinary care and communications model and should be considered as a ‘best practice’ guideline for treating all lung cancer patients.

Leslie Kohman, MD, championed the team concept at Upstate 20 years ago “because it gives better care to the patient, and it saves the patients a tremendous amount of time getting around to all of those different appointments,” she says.

What was named the Thoracic Oncology Program, or TOP, at Upstate was modeled after programs at leading cancer institutes: Dana Farber and Brigham and Women’s in Boston, and the University of North Carolina.

“Not only does it save patients time, but almost all cancer patients today — and even beginning back then — need more than one modality. Very few patients are treated with just surgery, or just chemotherapy or just radiation,” Kohman says. “To have experts from all those disciplines discuss treatment up front is very beneficial to the patient.”

Cancer teams at Upstate

The Upstate Cancer Center is part of an academic medical center, where medical providers are accustomed to collaborating on patient care. These groups have formalized that process with multidisciplinary care teams:

  • Breast: 315-464-3510
  • Gastric and Esophageal (including liver, pancreas and gallbladder): 315-464-6295
  • Head and Neck (including ear, nose and throat): 315-464-3510
  • Lung: 315-464-3509
  • Pediatrics: 315-464-5294

Cancer Care magazine fall 2019 issue coverThis article appears in the fall 2019 issue of Cancer Care magazine.

Posted in cancer, health care, HealthLink on Air, lung/pulmonary | Tagged ,

Putting the brakes on lung cancer

Ying Huang, MD, PhD (photo by Richard Whelsky)

Ying Huang, MD, PhD (photo by Richard Whelsky)

Finding clues to the cause of lung adenocarcinoma

This is one of a series of articles focusing on lung cancer.

BY AMBER SMITH

Scientists have long searched for the cause of lung cancer, particularly lung adenocarcinoma, the type that commonly occurs in nonsmokers. Ying Huang, MD, PhD, believes a gene she’s been studying for more than two decades may provide some answers.

Huang, a professor in the department of pharmacology at Upstate, works in collaboration with M. Saeed Sheikh, MD, PhD, also a professor in the department of pharmacology. They have independently identified a gene called monoglyceride lipase, abbreviated to MGL, which may be important in how lung adenocarcinoma develops.

Comparing tissue samples from more than 340 patients, they found normal levels of MGL in healthy lung tissue but significantly reduced levels in a big portion of the cancerous lung tissue. In the case of lung cancer, the research team found more than 65% of lung cancer showed reduced MGL levels.

Huang suspected MGL to be a tumor suppressor, a gene whose presence prevents cancer from growing, but whose absence allows it to grow. To determine whether MGL is a tumor suppressor, the researchers introduced a copy of the MGL gene into lung and colon cancer cells and found that MGL suppressed cancer cell growth.

Then, to further assess MGL’s role in cancer development in animals, they deleted the MGL gene from laboratory mice. Initially they found no tumors developing in the animals up to 6 months of age. But when the mice reached 10 months, lung cancers — specifically lung adenocarcinomas — became apparent in a significant portion of the animals.

“These results indicate that this gene is important in preventing lung cancer,” Huang says.

She described the research in the journal Cell Death and Disease.

“Our studies, using animals as a model, demonstrate for the first time that MGL deficiency is an important contributing factor in the development of lung adenocarcinomas,” she wrote.

The mice also developed cancer in the spleen, liver and lymphoid tissues, but “lung neoplasms were the most common,” said Huang. Pathologists Christopher Curtiss, MD, Steve Landas, MD, and Rong Rong, MD, PhD, collaborated on these studies

by evaluating animal tissues. Doctoral students Renyan Liu and Xin Wang also participated in the project. Liu is now a research fellow at the Harvard School of Dental Medicine. Wang continues her thesis research in Huang’s lab.

Huang hopes that her work contributes to the understanding of how lung cancer develops. She wants to explore MGL’s potential as a lung cancer treatment, too. Her MGL studies have been funded by grants from the National Institutes of Health and the Michael E. Connolly Endowment for Lung Cancer Research. Her lab is seeking additional funding for further research.

To donate to the Michael E. Connolly Endowment for Lung Cancer Research at Upstate, contact the Upstate Foundation at 315-464-4416.

The role of genes in cancer

Oncogenes

Proto-oncogenes are genes that normally help cells grow. When a proto-oncogene mutates, or changes, or there are too many copies of it, it becomes a “bad” gene that can become permanently turned on or activated when it is not supposed to be. When this happens, the cell grows out of control, which can lead to cancer. That bad gene is called an oncogene.

Think of a cell as a car. For it to work properly, there need to be ways to control how fast it goes. A proto-oncogene normally functions like a gas pedal. It helps the cell grow and divide. An oncogene could be compared with a gas pedal that is stuck down, causing the cell to divide out of control.

Tumor suppressor genes

Tumor suppressor genes are normal genes that slow cell division, repair DNA mistakes, or tell cells when to die (a process known as apoptosis or programmed cell death). When tumor suppressor genes don’t work properly, cells can grow out of control, which can lead to cancer.

A tumor suppressor gene is like the brake pedal on a car. It normally keeps the cell from dividing too quickly, just as a brake keeps a car from going too fast. When something goes wrong with the gene, such as a mutation, cell division can get out of control.

An important difference between oncogenes and tumor suppressor genes is that oncogenes result from the activation (turning on) of proto-oncogenes, but tumor suppressor genes cause cancer when they are inactivated (turned off).

Source: American Cancer Society

Cancer Care magazine fall 2019 issue coverThis article appears in the fall 2019 issue of Cancer Care magazine.

Posted in cancer, genetics, health care, lung/pulmonary, research

Exploring a protein’s role in lung cancer

M. Saeed Sheikh, MD, PhD (photo by Richard Whelsky)

M. Saeed Sheikh, MD, PhD (photo by Richard Whelsky)

This is one of a series of articles focusing on lung cancer.

BY AMBER SMITH

Work underway at Upstate is focused on a novel protein in lung cancer that could, potentially, help stimulate lung cancer cell death. It’s taking place in the lab of professor M. Saeed Sheikh, MD, PhD, thanks to a grant from the Michael E. Connolly Endowment for Lung Cancer Research, through the Upstate Foundation.

Mansi Babbar, PhD, completed her dissertation research in Sheikh’s lab,

characterizing a protein called Coiled-coil Helix Tumor and Metabolism-1, which is abbreviated to CHTM1. She earned her doctorate at Upstate and is now a postdoctoral fellow at the National Institutes of Health.

So, what’s important to know about CHTM1?

Some lung cancer cells are addicted to glutamine, the body’s most abundant amino acid. This is what a molecule of glutamine looks like.


Some lung cancer cells are addicted to glutamine, the body’s most abundant amino acid. This is what a molecule of glutamine looks like.

Sheikh’s team — which also included Ying Huang, MD, PhD, and Christopher Curtiss, MD— examined tissue samples from more than 230 patients with lung, breast or colon cancer and found elevated levels of this protein in the majority of samples.

In a series of additional experiments, they established a role for CHTM1 in cancer cell metabolism.

“It is known that certain cancer cells, including some lung cancer cells, are addicted to glucose and glutamine,” Sheikh says, describing glutamine as the body’s most abundant amino acid, needed for various building blocks, which cancer cells rely on as a nutrient for proliferation. “Deprivation of these nutrients leads to a type of stress known as metabolic stress.”

The researchers also discovered that a deficiency of CHTM1 makes lung cancer cells more sensitive to being killed by metabolic stress.

“Cancers are metabolically flexible,” Sheikh says, explaining that “in the absence of important nutrients, they appear to utilize markers to survive the metabolic stress induced by nutrient deprivation.

“We think CHTM1 is one such marker. It appears to help cancer cells grow during the early stages of development, when blood supply is not fully established and nutrients are scarce.”

Take away CHTM1, he says, “and we can increase lung cancer cell death during metabolic stress.”

A paper written by Babbar, Huang, Curtiss and Sheikh this year in the Journal of Experimental & Clinical Cancer Research describes their

approach and results for disabling this protein.

The Upstate team also notes that a deficiency of CHTM1 made lung cancer cells more sensitive to anticancer effects of metformin, a drug that helps people with diabetes control their blood sugar.

Researchers around the world became intrigued by metformin after doctors noticed that people who have taken the drug long term seem to have a lower incidence of cancer. Studies are underway to determine the cancer-fighting properties of metformin.

“There is a lot of enthusiasm about this drug,” Sheikh says.

He believes that with the CHTM1 protein disabled, metformin — or other, similar drugs — may prove to be more effective in fighting cancer.

Answers lead to new, intriguing questions

  • Higher levels of the protein CHTM1 are present in some lung cancers, as well as some breast cancers and colon cancers. Could this fact lead the way to the development of a biomarker, or biological indicator of disease?
  • Cancer cells become sensitized when levels of the protein CHTM1 are diminished. Would that help an anti-cancer drug become more effective?
  • The protein CHTM1 helps lung cancer cells grow during the early stages of development. Depriving fully developed lung cancer cells of certain nutrients creates metabolic stress, and they are more sensitive to death by metabolic stress when they lose CHTM1. If scientists induce metabolic stress and block CHTM1 at the same time, would that be a novel approach to kill lung cancer cells?

To donate to the Michael E. Connolly Endowment for Lung Cancer Research at Upstate, contact the Upstate Foundation at 315-464-4416.

Cancer Care magazine fall 2019 issue coverThis article appears in the fall 2019 issue of Cancer Care magazine.

 

 

 

Posted in cancer, health care, lung/pulmonary, research | Tagged ,