Posts tagged ‘cancer survivor’


Children with cancer, Part 3: Transitioning from patient to survivor

July 7, 2014 | by

John Cloer was three months shy of his third birthday in 2004 when he was diagnosed with acute lymphoblastic leukemia. For the next three and a half years, he received chemotherapy at City of Hope, finally obtaining long-term remission.

childhood cancer survivor John Cloer

The challenges of a cancer diagnosis don’t stop with treatment. Survivorship brings its own challenges, as John Cloer, a former leukemia patient at City of Hope, knows well.

His parents Bill and Gina, along with John and his younger brother Steve, recently sat down to reflect on that experience, sharing tips for family members and friends of children with cancer, as well as advice for parents of children with cancer. Here, they and City of Hope pediatric nurse Karla Wilson, R.N., M.S.N., discuss the sometimes difficult transition from treatment to survivorship.

In this third of a three-part series, they describe the transition from patient to survivor.

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Some of the cancer treatments that save children’s lives also may produce life-altering side effects that don’t materialize for years.

During the Cloers’ annual visit to City of Hope’s Childhood Cancer Survivorship Program, Wilson reviews John’s medical progress, and reminds his parents about conditions they’ll need to monitor.

When alerting patients that they may be prone to future therapy-related conditions, Wilson said she always tries to drive home one message above all: Just because survivors are at risk for a condition doesn’t mean they’ll necessarily develop it. » Continue Reading


Children with cancer, Part 2: How parents can help their kids

June 30, 2014 | by

John Cloer was three months shy of his third birthday in 2004 when he was diagnosed with acute lymphoblastic leukemia. For the next three and a half years, he received chemotherapy at City of Hope, finally obtaining long-term remission.

John Cloer

Now 13, John Cloer, right with younger brother Steve, was only 3 when he was diagnosed with acute lymphoblastic leukemia. His parents learned the hard way how to cope with a new array of parenting challenges. Shown here: John (right) with his brother, Steve.

His parents Bill and Gina, along with John and his younger brother Steve, recently sat down to reflect on that experience, sharing tips for family members and friends of children with cancer and now, their advice for parents facing a similar challenge.

In this second of a three-part series, they answer the question:

How can parents help their children with cancer? 

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1. Numb the pain. Perhaps because he still remembers caregivers frantically trying to start an IV in him the day he was diagnosed, John still dreads IVs and injections. The Cloers now ask nurses to use lidocaine to numb a site before the needle goes in. (They pay for this off-protocol request, but find it worth the costs.)

In the early days of John’s illness, the tense toddler used to “rub the rubber right off his pacifier,” said Bill. “I wish we had had a better tool set to manage his anxiety,” he added. Gina regrets they didn’t get John into the habit of meditating before procedures, “a coping skill I wish he’d have now.” » Continue Reading


Children with cancer, Part 1: How family members and friends can help

June 23, 2014 | by

John Cloer became a teenager in May, an ordinary rite of passage made extraordinary because he is a cancer survivor – one of an estimated 370,000 pediatric cancer survivors in the U.S.

Childhood cancer patient John Cloer

The parents of John Cloer, now a childhood cancer survivor, learned many lessons during his treatment for leukemia. Photo courtesy of the Cloer family.

He was three months shy of his third birthday in 2004 when what his parents Bill and Gina Cloer assumed was the flu was diagnosed as acute lymphoblastic leukemia. For the next three and a half years, John received chemotherapy – eventually leading to his long-term remission.

John finally became well enough to attend kindergarten and enjoy normal pursuits like T-ball. In fact, his perseverance (from staying late to practice, to reveling in teammates’ progress) earned the 6-year-old an invitation to play T-ball on the White House lawn and meet President George Bush. He has long raised awareness for City of Hope, from presenting an award to singer Miley Cyrus to riding on the hospital’s 2014 Tournament of Roses float as his sister Heather, a City of Hope nurse, walked alongside.

When John was embarking on cancer treatment, Bill and Gina were given well-tested roadmaps from oncologists adept at keeping children alive. On the comparatively uncharted path of cancer survivorship, they have longed for a similar roadmap. Along with regular follow-up visits with doctors such as Clarke Anderson, M.D., the Cloers are being helped in their survivorship journey by City of Hope’s Childhood Cancer Survivorship Program, led by Smita Bhatia, M.D., M.P.H., the Ruth Ziegler Chair in Populations Sciences, and nurse practitioner Karla Wilson, M.S.N., R.N.

In this program, John and his family receive a comprehensive medical summary of his diagnosis and treatment, as well as an individualized review of his potential late-effects from treatment.

Bill, Gina, John and his younger brother, Steve, recently sat down around their dining room table and offered some advice to parents of children with cancer, along with well-meaning family and friends.

In this first of a three-part series, they answer the question:

What can family/friends do to help parents whose children have cancer?

» Continue Reading


For runner Michele Sturt, this journey began with a lymph node

May 22, 2014 | by

Every patient story is unique and, so in its own way, inspiring. Here, Michele Sturt – a runner, a nurse and a mother of four – shares her story of non-Hodgkin lymphoma and of her ultimate treatment at City of Hope.

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I was diagnosed with non-Hodgkin lymphoma in 2007 when I was 54 years old. I had been a runner since I was in my early twenties and used running as my gauge to my personal wellness status. How fast, how much effort, how many aches and pains, how many personal bests … these have been my general health parameters for many years. In other words, aside from various weekend warrior accidents, I had been quite healthy until I was told I had non-Hodgkin lymphoma.

patient Michele Sturt

Michele Sturt of Petoskey, Michigan, has long used running as her gauge of personal health. Before she was diagnosed with non-Hodgkin lymphoma, her running signaled to her that something wasn’t quite right. Now, almost a year post-bone marrow transplant at City of Hope, she’s running once more. Here, she runs near a son’s home in Santa Barbara. Photo courtesy of Michele Sturt.

I had noticed that I was really having a hard time keeping up with my running friends. I was working too hard and not getting anywhere fast. I also had a single small inguinal lymph node that was new. It didn’t bother me other than I knew it wasn’t normal. Besides being a runner, I am also a nurse practitioner in internal medicine.

First, I waited the obligatory four to six weeks to see if it would go away. I also complained to one of the doctors I work with, and she felt I should have the node biopsied and be done with it. The general surgeon gave me the option of waiting longer before doing anything, but at that point I wanted the node out and evaluated. I was tired but had no other symptoms.

My diagnosis was non-Hodgkin lymphoma, specifically indolent follicular B cell, a slow-growing, not curable but treatable form of lymphoma.

So, now what? I didn’t feel like I had cancer. I had lived an unusually clean and healthy life, although crazy busy and active, and I was the last person you would expect to have cancer, unless you knew what I knew – it’s a dice throw and I just crapped out. With only one oncologist available in my hometown of Petoskey, Michigan, at that time, I needed to figure out where to go for answers. » Continue Reading


Bladder cancer patient fought symptoms for 15 years (VIDEO)

March 13, 2014 | by

Christine Crews thought she had a bladder infection. Turns out, the Memphis, Tenn., resident had bladder cancer. For 15 years, she fought it with chemotherapy and occasional tumor removals.

When the cancer spread to 80% of her bladder, she was told she would need to have her entire bladder removed. She got a second opinion. And another. Crews wasn’t comfortable with any of the recommendations; she wanted other options. When a urologist friend recommended she call City of Hope, she did.

“They actually listened to what I wanted from the surgery,” Crews said. “They were able to give me options that other hospitals were not able to give me.”

In the video above, Crews shares her story to help other people with bladder cancer understand just how special City of Hope is, and what their options really are.

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Support bladder cancer research at City of Hope and your gift will be matched dollar-for-dollar, up to $100,000, by our friends at the Post-it® Brand from 3M. Donate now.

Learn more about City of Hope’s bladder cancer program.

Read the Breakthroughs post “8 questions and answers about bladder cancer.”

 

 


Is an epidemic of thyroid cancer really an epidemic of diagnosis?

February 25, 2014 | by

An epidemic of thyroid cancer in the U.S. is actually an epidemic of diagnosis, conclude the authors of a new report. Their analysis pointed out that, although thyroid cancer diagnoses have nearly tripled during the past 30 years, mortality rates have remained the same. To them, this means the disease has been dramatically overdiagnosed.

Screening for thyroid cancer

Thyroid cancer is overdiagnosed, a new study bluntly claims. A City of Hope expert disagrees, pointing to mortality data as proof that screening works. Here, a woman undergoes screening for thyroid abnormalities.

City of Hope thyroid cancer expert John Yim, M.D., associate professor of surgery, strongly disagrees.

“I think ‘overdiagnosis’ is an inappropriate term,” said Yim, who was not involved in the research published recently in JAMA Otolaryngology-Head & Neck Surgery. “All of the patients are presumed to have been accurately diagnosed with thyroid cancer, primarily papillary thyroid cancer [the most-common, least-aggressive kind]. The question is whether the thyroid cancer identified, particularly when small, will progress to become symptomatic or deadly.”

That remains the nettlesome question both for physicians and for patients. Is watching and waiting – dubbed “active surveillance” – as safe for small tumors as surgical removal of them?  » Continue Reading


From the expert: How to help families whose children have cancer

February 13, 2014 | by

Learning that a friend or colleague’s child has been diagnosed with cancer can leave people wanting to help – then stopping short because they have no idea how to do so.

Sick child

Friends and family often don’t know what to say to, or how to help, parents whose children have cancer. We offer some guidance.

“So often, people don’t know what to do or say, so they back off, waiting for the family to reach out. Meanwhile, the family is in chaos and trauma, and doesn’t know how or when to reach out,” said Jeanelle Folbrecht, Ph.D., associate clinical professor of psychology in the Department of Supportive Care Medicine at City of Hope.Folbrecht’s overall advice: “Stay engaged with the family in a way that’s not intrusive … that shows that you care, are willing to help, and that you don’t feel helping is a burden,” she said.

In this interview, she offers some guidelines on how best to bring comfort. » Continue Reading


Lymphoma changed Emmet and Toni Stephenson; now they want to change it

February 12, 2014 | by

During their 46-year marriage – an attraction begun as kindergarten sweethearts – entrepreneurs Emmet and Toni Stephenson have worked together to build diverse businesses ranging from portfolio management to Internet publishing. When Toni was diagnosed with T cell lymphoma last spring, the couple refocused their energies into restoring her health.

Stephensons

Emmet and Toni Stephenson with their daughter Tessa Stephenson Brand

“Cancer became the center of our life,” Emmet said. “Our priorities really got changed and turned upside down almost instantly.”

“It did change us,” Toni said. “It was quite a summer.”

Toni is currently in remission following treatment at City of Hope, and the couple and their only child, Tessa Stephenson Brand, recently gave City of Hope $10 million to create the Toni Stephenson Lymphoma Center. That center is the cornerstone of City of Hope’s new Hematologic Malignancies Institute. 

Here, the couple shares their life-changing experience – and how it led them to where they are today: trying to change the future for other people with lymphoma.  » Continue Reading


Childhood survivors of BMTs need medical monitoring in adulthood

December 20, 2013 | by

Improvements in hematopoietic cell transplants have been credited with increasing survival among patients undergoing the procedure by an estimated 10 percent per decade.

Childhood BMT survivors

More children than ever are surviving bone marrow transplants, but they often suffer long-term health problems. Photo credit: Photodisc

Yet, childhood survivors of the transplants, which are often referred to as bone marrow transplants (BMT), also are at a substantial risk of developing chronic and sometimes life-threatening medical conditions after transplantation.

In fact, nearly one in four will develop a severe or debilitating health condition (such as stroke or heart disease, another type of cancer or musculoskeletal problems) 15 years after transplantation.

At the American Society of Hematology (ASH) Meeting and Exposition in New Orleans in December, Saro Armenian, D.O., M.P.H.,  medical director of City of Hope’s Pediatric Survivorship Clinic, presented a report from the Bone Marrow Transplant Survivor Study (BMTSS).

“This study identified subgroups of survivors who may be at an especially high risk for these complications,” said Armenian, first author of the study. “This can inform current treatment strategies as well as screening practices for late effects in survivors seen in our clinics.”

The original BMT Long-term Follow-up Study cohort, begun in 2000, consisted of more than 2,500 children and adults who had received blood stem cell or bone marrow transplantation at City of Hope or the University of Minnesota between 1974 and 1998 and who had survived two or more years. The principal investigator for this National Cancer Institute-funded study was Smita Bhatia, M.D., M.P.H., director of the Center for Cancer Survivorship at City of Hope and the Ruth Ziegler Chair in Population Sciences.

In the new study presented at ASH, participants included 317 BMTSS patients who underwent hematopoietic cell transplantation (HCT) in childhood between 1976 and 1998 at one of the institutions. Their median age at transplant was 7.9 years, and at study participation was 19.9 years.

Forty-two percent of participants were female, 86.7 were non-Hispanic white, and 79 percent underwent allogeneic HCT (in which they received hematopoietic stem cells from a related or unrelated donor).

Two issues were identified as potentially chronic and or life-threatening for some of these survivors.

“Exposure to TBI was associated with a 1.3-fold risk of a chronic health condition, and a 2.6-fold risk of a severe/life-threatening/fatal condition compared to chemotherapy only,” Armenian said. Total body irradiation (TBI) was used in 61 percent of two-year survivors.

Chronic graft-versus-host disease (cGvHD) was reported in 26 percent of patients. Among allogeneic HCT recipients, cGvHD was associated with a two-fold risk of severe/life-threatening/fatal conditions compared to survivors without cGvHD.

Overall survival in this group was 80 percent at 10 years after HCT, Armenian reported. The main cause of death included primary disease (61 percent), secondary cancer (8 percent), cGvHD (6 percent), cardiopulmonary compromise (5 percent) and other causes, including infections and other organ toxicity (21 percent). Researchers also found that the cohort was at a 22-fold increased risk of premature death compared to age-and sex-matched general population.

Female participants, those treated with TBI, and autologous HCT survivors had the highest risk of premature death.

“This represents a broad assessment of multiple outcomes,” said Armenian. “It is important that the next generation of studies explore the reasons why certain complications occur in some individuals but not in others. Understanding this can set the stage for personalized care and long-term management,” Armenian said.

Smita Bhatia, the study’s senior author, agreed.

“Childhood HCT survivors carry a substantial burden of morbidity, years following completion of therapy, providing clear evidence for their close monitoring in a specialized setting targeting these high-risk complications,” said Bhatia.

Other City of Hope researchers participating in this study included Can-Lan Sun, M.D., Ph.D., director of survey research; Liton Francisco, staff scientist in outcomes research; Joseph Rosenthal, M.D., the Barron Hilton Chair in Pediatrics; and Stephen J. Forman, the Francis & Kathleen McNamara Distinguished Chair of Hematology and Hematopoietic Cell Transplantation.


‘My cancer diagnosis: What I wish I’d known’ – Roshen Tikari (w/PODCAST)

October 16, 2013 | by

One in a series of stories asking former patients to reflect upon their experience …

Three-time lymphoma survivor Roshen Tikari made it through by keeping her family and friends close.

Three-time lymphoma survivor Roshen Tikari made it through by keeping her family and friends close.

When Roshen Tikari received her first lymphoma diagnosis, 30 years ago, she experienced a flood of fear and anxiety.

When she received her third diagnosis, last year, that deluge of emotion was replaced with a calm sense of purpose.

“When it came back for the third time, I didn’t freak out. There was no fear,” said Tikari, a resident of Rancho Palos Verdes, Calif. “‘OK. It’s come back. Just deal with it; attend to it; get rid of it.’”

It helped that she had City of Hope on her side. From the chemotherapy that drove away lymphoma in 1983 to the bone marrow transplant that conquered a recurrence seven years later to the clinical trial that led to complete remission earlier this year, the medical team at City of Hope has rewarded Tikari’s faith with a return to health.

Along the way, her experiences with cancer propelled her to a kind of hard-won personal growth.

PODCAST: Roshen Tikari talks about her story, her perspective and her advice in City of Hope’s Cancer Journeys podcast. Download and listen >>>

“Before that, I was just existing. And then, after going through all my treatments and I came out of it, I started to live,” she said.

The latest good news — complete remission — arrived this year at a meaningful time for the proud mother and grandmother.

“It was the greatest Mother’s Day gift I’ve ever received,” she said.

We asked Tikari to look back at the time of her diagnosis and to ask herself what she knows now that she wishes she’d known then. What wisdom, soothing words, practical tips or just old-fashioned advice would she give her newly diagnosed self? » Continue Reading