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AVEO Oncology (AVEO) Announces Positive CHMP Opinion for Tivozanib as Treatment of Advanced Renal Cell … –

Posted: June 23, 2017 at 8:44 pm

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AVEO Oncology (NASDAQ: AVEO) today announced that the Committee for Medicinal Products for Human Use (CHMP), the scientific committee of the European Medicines Agency (EMA), has recommended FOTIVDA (tivozanib) for approval as a treatment for patients with advanced renal cell carcinoma (RCC). The CHMP’s recommendation is now referred to the European Commission (EC). The EC, which typically adheres to the recommendation of the CHMP, but is not obligated to do so, is expected to make its final decision in about 67 days. If approved by the EC, marketing authorization for tivozanib will be granted in all 28 countries of the European Union, Norway, Iceland and Liechtenstein. EUSA Pharma, a specialty pharmaceutical company with a focus on oncology and oncology supportive care, is the European licensee for tivozanib.

A positive opinion from the CHMP is a critical step in our goal of obtaining regulatory approval of tivozanib as a treatment for RCC, said Michael Bailey, president and chief executive officer of AVEO. Tivozanibs unique tolerability profile together with the longest progression free survival reported in a Phase 3 first line RCC study, have the potential to fill an unmet patient need for better tolerated treatment in this disease. Further, we believe this tolerability profile could enable immune-oncology combinations such as those in the Phase 1/2 TiNivo study, which combines the PD-1 inhibitor Opdivo (nivolumab) with tivozanib and recently advanced to Phase 2.

Mr. Bailey concluded: If the European Commission grants marketing approval for tivozanib, it would trigger a $4 million research and development reimbursement payment from EUSA, and AVEO will also be eligible for up to $12 million in additional milestones from EUSA based on member state reimbursement and regulatory approvals. These payments would add significant resources to our balance sheet as we work toward the anticipated readout of our U.S. pivotal trial in third-line RCC, the TIVO-3 trial, in the first quarter of 2018.

Under the terms of their December 2015 agreement, EUSA Pharma has agreed to pay AVEO up to $394 million in future research and development funding and milestone payments, assuming successful achievement of specified development, regulatory and commercialization objectives, as well as a tiered royalty ranging from a low double-digit up to mid-twenty percent on net sales of tivozanib in the agreements territories. Thirty percent of milestone and royalty payments received by AVEO, excluding research and development funding, are due to Kyowa Hakko Kirin (KHK) as a sublicensing fee in Europe. In the United States, the royalty obligation to KHK ranges from the low- to mid-teens on net sales.

RCC is the most common form of kidney cancer,i which accounts for an estimated 49,000 deaths in Europe each year.ii It is expected to be one of the fastest increasing cancers over the next ten years.iii Tyrosine Kinase Inhibitor (TKI) vascular endothelial growth factor (VEGF) inhibitors are the standard of care treatment for advanced RCC in Europe, however, patients on current treatments can often experience significant side effects.iv,v If approved for use in the European Union, tivozanib would be indicated for use in adult patients with advanced RCC who are VEGFR and mTOR pathway inhibitor-nave and are either untreated or who have failed prior therapy with interferon-alpha (IFN-) or interleukin-2 (IL-2).

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AVEO Oncology (AVEO) Announces Positive CHMP Opinion for Tivozanib as Treatment of Advanced Renal Cell … –

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Renowned Surgical Oncologist, Carolyn Nessim, MD, MSc, FRCSC, FACS will be Displayed in The Leading … – PR NewsChannel (press release)

Posted: at 8:42 pm

The International Association of HealthCare Professionals is pleased to welcome Carolyn Nessim, MD, MSc, FRCSC, FACS to their prestigious organization with her upcoming publication in The Leading Physicians of the World. She is a highly trained and qualified Surgical Oncologist with an extensive expertise in all facets of her work, especially melanoma, soft tissue sarcoma/GIST and gastric cancer. Dr. Nessim has been in practice for 4 years and is currently serving patients within The Ottawa Hospital located in Ottawa, Ontario. In addition to her clinical work, Dr. Nessim serves as Assistant Professor of Surgery at the University of Ottawa and a Clinician Investigator in the Cancer Therapeutics Program at The Ottawa Hospital Research Institute and has publications in peer-reviewed journals. Her main research focus is identifying predictive markers in cancer care as well as quality and access to cancer care for patients.

Dr. Nessim graduated with her Medical Degree at the University of Montreal in 2004, followed by her Master Degree in Biomedical Sciences in 2014 within the same educational venue. She went on to serve her General Surgery residency at the University of Montreal, before undertaking her fellowship in Surgical Oncology at the University of Toronto, and an additional fellowship in Surgical Oncology at Peter MacCallum Cancer Center in Melbourne, Australia. She is board certified in General Surgery by the American Board of Surgery and has earned the coveted title of Fellow of the American College of Surgeons. She also holds board certification in General Surgical Oncology and General Surgery with the Royal College of Physicians and Surgeons of Canada, of which she is also a Fellow.

Dr. Nessim keeps up to date with the latest advances in her field by maintaining professional memberships with the the Society of Surgical Oncology, the American Society of Clinical Oncology, the Canadian Society of Surgical Oncology, the Canadian Association of General Surgeons, the American College of Surgeons and the Canadian Medical Association. She has a passion for her surgical field and for her patients and is kind, very empathetic, and personable. Dr. Nessim attributes her success to the excellent mentors and teachers she has had, and in her free time, she enjoys theatre, music, painting, reading, eco-traveling, canoeing, rafting, hiking, and camping.

View Dr. Carolyn Nessims Profile Here:

Learn more about Dr. Nessim here: and be sure to read her upcoming publication in The Leading Physicians of the World.

About is a hub for all things medicine, featuring detailed descriptions of medical professionals across all areas of expertise, and information on thousands of healthcare topics. Each month, millions of patients use FindaTopDoc to find a doctor nearby and instantly book an appointment online or create a review. features each doctors full professional biography highlighting their achievements, experience, patient reviews, and areas of expertise. A leading provider of valuable health information that helps empower patient and doctor alike, FindaTopDoc enables readers to live a happier and healthier life. For more information about FindaTopDoc, visit:

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Renowned Surgical Oncologist, Carolyn Nessim, MD, MSc, FRCSC, FACS will be Displayed in The Leading … – PR NewsChannel (press release)

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Expert Surgical Oncologist, Pat Whitworth, MD, is to be Recognized as a 2017 Top Doctor in Nashville, Tennessee – PR NewsChannel (press release)

Posted: at 8:42 pm

Pat Whitworth, MD is a Surgical Oncologist at AdvancedHEALTH, the largest, independent, multi-specialty practice in Middle Tennessee. AdvancedHEALTH includes over 350 physicians, surgeons, and mid-level providers within 30 specialties. They are focused on providing the highest level of quality care, while reducing costs to their patients. Dr. Whitworth is also affiliated with TriStar Centennial Medical Center and Saint Thomas Midtown Hospital, and has been named a 2017 Top Doctor in Nashville, Tennessee. Top Doctor Awards is dedicated to selecting and honoring those healthcare practitioners who have demonstrated clinical excellence while delivering the highest standards of patient care.

Dr. Pat Whitworth is a highly experienced Surgical Oncologist, having been in practice in Nashville since 1991. After graduating from the University of Tennessee College of Medicine he completed surgical residency at the University of Louisville and then completed fellowship in Surgical Oncology at the MD Anderson Cancer Center in Houston in 1991.

Dr. Whitworth is certified by the American Board of Surgery, and throughout his career has served in leadership positions in national surgical and breast surgery professional organizations. He is renowned across Tennessee and beyond, however, as an expert surgical oncologist and breast surgeon, and he currently serves as Director of the Nashville Breast Center.

Dr. Whitworth is known not only for his surgical excellence, but also for his patient-centered approach to medicine and his caring and compassionate attitude. This makes him popular with his patients and peers alike, and it also makes Dr. Pat Whitworth a very worthy winner of a 2017 Top Doctor Award.

About Top Doctor Awards

Top Doctor Awards specializes in recognizing and commemorating the achievements of todays most influential and respected doctors in medicine. Our selection process considers education, research contributions, patient reviews, and other quality measures to identify top doctors.

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Expert Surgical Oncologist, Pat Whitworth, MD, is to be Recognized as a 2017 Top Doctor in Nashville, Tennessee – PR NewsChannel (press release)

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KZN Health MEC says recruitment for new oncologist’s will be … – East Coast Radio

Posted: at 8:42 pm

Dhlomo says they have also been told by the manufactures that broken machinery will be up and running in no time.

The MEC tabled his department’s interventions for the public health crisis in the KZN Legislature in Pietermaritzburg yesterday.

Other challenges facing the department include human resource management, financial management, supply chain management, aging infrastructure and equipment.

” We are looking into the report, we will specifically be looking into the recommendations of the Human Rights Commission and attend to it. In the report they so mention some of the patients,” he said.

KZN Premier, Willies Mchunu, said yesterday that the health budget will be re-prioritised to ensure critical posts are filled.

Finance MEC, Belinda Scott, says the commitment from Treasury will be substantial.

Opposition parties asked why the situation had not been sorted out earlier – considering it had been brought up several times before.

She says it is not true the Health and Finance are only waking up to the problem now.

” For me the first thing was to try and go in do an assessment, find out what it would cost to do an immediate turn around and we have very tight timelines. We want to see real improvement by January next year,” she said.

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KZN Health MEC says recruitment for new oncologist’s will be … – East Coast Radio

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Prostate cancer blood test could transform treatment, say …

Posted: at 8:41 pm

Nurse takes a blood sample. Photograph: Anthony Devlin/PA

Scientists have developed a simple three-in-one blood test they believe could transform treatment of advanced prostate cancer, helping to extend or save lives.

The test, developed by researchers at the Institute of Cancer Research (ICR) in London and the Royal Marsden NHS foundation trust, picks out men suitable for treatment with olaparib, part of a revolutionary class of drugs called PARP-inhibitors, which stops damaged cells from repairing themselves.

The liquid biopsy, less invasive than a tissue biopsy, also detects early signs of resistance to olaparib and monitors the cancers evolution over time, according to the paper, published in Cancer Discovery on Monday.

Prof Johann de Bono, Regius professor of cancer research at the ICR, and consultant medical oncologist at the Royal Marsden NHS foundation trust, said: Our study identifies, for the first time, genetic changes that allow prostate cancer cells to become resistant to the precision medicine olaparib.

From these findings, we were able to develop a powerful, three-in-one test that could in future be used to help doctors select treatment, check whether it is working and monitor the cancer in the longer term. We think it could be used to make clinical decisions about whether a PARP-inhibitor is working within as little as four to eight weeks of starting therapy.

Not only could the test have a major impact on treatment of prostate cancer, but it could also be adapted to open up the possibility of precision medicine to patients with other types of cancer as well.

By testing cancer DNA in the bloodstream, the researchers found they could pick out which men with advanced prostate cancer were likely to benefit from treatment with the drug.

They also used the test to analyse DNA in the blood after treatment had started, so people who were not responding could be identified and switched to alternative therapy in as little as four to eight weeks.

Thirdly, they used the test to monitor a patients blood throughout treatment to quickly pick up signs that the cancer was evolving genetically and might be becoming resistant to the drugs.

The researchers collected blood samples from 49 men at the Royal Marsden with advanced prostate cancer enrolled in the phase II clinical trial of olaparib.

The drug is effective at killing cancer cells that have errors in genes which would otherwise keep them healthy. Some patients respond to olaparib for years but in others the treatment can fail early or the cancer can evolve resistance.

The ICR chief executive, Prof Paul Workman, said the test could usher in a new era of precision medicine for prostate cancer.

He said: Blood tests for cancer promise to be truly revolutionary. They are cheap and simple to use, but most importantly, because they arent invasive, they can be employed or applied to routinely monitor patients to spot early if treatment is failing offering patients the best chance of surviving their disease.

The research was funded by the Prostate Cancer Foundation, Prostate Cancer UK, Movember, Cancer Research UK and the National Institute for Health Research.

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cancer treatment option – Make money from home – Speed Wealthy

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New cancer treatment technology allows for painless, non-invasive options

Channel: FOX 2 St. Louis & Total View: 89

Add Date: April 20, 2017, 6:14 am & Duration: 00:03:25

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ST. LOUIS, MO (KTVI) Prostate cancer is the second most common cancer to develop in men and one in seven men will be diagnosed with this cancer in their lifetime. Medical experts, however, are developing new cutting edge technology to target cancers such as prostate cancer as well as non-cancerous conditions.

This new technology is called the Cyberknife. Cyberknife is a painless, non-invasive alternative to the surgical route to treat cancer. It targets both cancerous and non-cancerous tumors throughout the body and is known for being especially useful in the treatment of prostate cancer. By using high-dose beams of radiation, this course of treatment decreases the number of visits from the average 45 including radiation therapy to five outpatient visits.

While the Cyberknife proves to be effective in the treatment of prostate cancer, it can also treat tumors located in the brain, lungs, spine, kidney and pancreas and the liver.

Medical director of St. Louis Cyberknife John Bedwinek and patient Geoffrey Boshier join us for more on the latest cancer treating technology, the Cyberknife.

For more information, visit or call 636-496-4660.

St. Louis Cyber Knife 1011 Bowles Avenue Suite…

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New cancer treatment offerings bring hope during the 26th Annual Celebration of Life – Loma Linda University Health

Posted: at 8:41 pm

Judy Chatigny, MSN, executive director, Loma Linda University Cancer Center, welcomed participants and emceed the event.

New treatments offer expanded possibilities for cancer treatment, the director of Loma Linda University Cancer Center told a gathering of cancer survivors, their families and members of the community earlier this month.

The centers director, Mark Reeves, MD, PhD, said that for the first time a drug to treat cancer has been approved not based on where in the body the cancer started, but based on what mutations the cancer has.

The new drug Pembrolizumab, which was approved by the FDA last month, targets certain mutations, Reeves said.

He also revealed that the Loma Linda University Cancer Center is performing research with the National Cancer Institute to dramatically expand this paradigm to multiple mutations and many drugs to target those mutations through the institutes ongoing MATCH trial. The center is also participating in approximately 75 other clinical trials, he said.

Reeves made his remarks during the 26th annual Celebration of Life, which is an annual event that takes place in June. Judy Chatigny, MSN, Executive Director, Loma Linda University Cancer Center, served as emcee for the June 4 program, which was held in the Wong Kerlee International Conference Center.

Services and treatment

During the celebration, Reeves shared news about new programs in the Loma Linda University Cancer Center.

The first adds radiosurgery capabilities to those already offered, increasing the ability of cancer specialists at Loma Linda University Health to treat brain tumors.

Were adding to those capabilities so we can treat a wider variety of patients with brain tumors, he said.

Reeves also announced that the adult bone marrow transplant unit at the Cancer Center is open. The unit complements ongoing transplant treatment for pediatric patients.

The final program Reeves highlighted was the creation of a comprehensive low-dose CT scanning lung cancer screening program. The process includes screening with low-dose CT, providing counseling focusing on smoking cessation and treatments available at the Loma Linda University Cancer Center, a multidisciplinary treatment center.

In the first few weeks of the program, nearly 40 patients have completed the screening process.

This means that of the people who completed the screening process, one fifth of those patients at risk of dying who complete the program are not going to die, Reeves said.

Living with resiliency and hope

Following Reeves presentation, Chatigny, MSN, introduced Vickie and Jeffrey Manz, a couple who both have received cancer treatment at Loma Linda University Cancer Center.

The Manzes explained why they chose to travel to Loma Linda from Florida for treatment Jeffrey Manz for proton therapy after being diagnosed with prostate cancer 15 years ago, and more recently Vickie Manz for breast cancer treatment.

While the Manzes could have chosen other top cancer centers, The treatment at Loma Linda is different, she said. The treatment across the board takes into consideration the whole person. Loma Linda has been wonderful; it is a place where the staff celebrate life.

Participants also learned how to create resilience in their lives as Barbara Hernandez, PhD, LMFT, RN, director of physician vitality at Loma Linda University Health, spoke about living a joyful life. We can actually nurture joy in our own lives by dedicated efforts that foster gratitude, optimism, practicing spiritual disciplines such as prayer, and by intentionally adding value to other peoples lives, said Hernandez.

Two nurses at Loma Linda University HealthKimberly Watson and Deanne Sparrowwere honored with the Don Kroetz Courage to Care Leadership Award, highlighting their whole person care for oncology patients.

Jan Kroetz, MN, RN, NE-BC, chief nursing officer at Loma Linda University Medical Center, established the award 20 years ago to honor exceptional oncology nurses after her son Don’s passing.

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Haverfordwest mum’s ‘roadblocks’ to SIRT cancer treatment – BBC … – BBC News

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Haverfordwest mum's 'roadblocks' to SIRT cancer treatment – BBC …
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Anca Falconer, 36, was diagnosed with cancer just days after giving birth in 2010.

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One step at a time, Relay For Life raises money for cancer treatment – KSHB

Posted: at 8:41 pm


Karol Iser has a busy summer ahead.

Two weddings,” she said. “I have two daughters that are getting married.

Living to see this was once in question for Iser.

Twenty-two years ago, she was diagnosed with a rare form of cancer.

And every prognosis that we had in Kansas City was not a good one, she said.

Iser went to Virginia for treatment and has been cancer free since.

She continues to take it one step at a time and will count her steps this weekend literally.

Shes on one of many teams participating in Relay For Life, the American Cancer Societys signature fundraiser.

Sarah Freyman with the American Cancer Society says the number of people impacted by cancer is alarming.

The statistics are crazy and really sad,” said Freyman. “One in two men in their lifetime will be diagnosed, and one in three women. Very high statistics.

Thats why organizers are pushing for even higher participation. Teams will be walking so that we can win the race for a cure, and so that survivors like Iser can create more memories.

Its huge, its huge that Im still here,” she said. “Got to see my girls grow up and I have a grandson, and I have a granddaughter on the way. So, its a huge thing.

Iser is participating in the Relay For Life Event, June 23 in Blue Springs, Missouri. Click here to find an event near you.

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What Mormon Family Trees Tell Us About Cancer – The Atlantic

Posted: at 8:40 pm

Nobody knew it then, but the genetic mutation came to Utah by wagon with the Hinman family. Lyman Hinman found the Mormon faith in 1840. Amid a surge of religious fervor, he persuaded his wife, Aurelia, and five children to abandon their 21-room Massachusetts house in search of Zion. They went first to Nauvoo, Illinois, where the faiths prophet and founder, Joseph Smith, was holding forthuntil Smith was murdered by a mob and his followers were run out of town. They kept going west and west until there were no towns to be run out of. Food was scarce. They boiled elk horns.The childrens mouths erupted in sores from scurvy. Aurelia lost all her teeth. But they survived. And so did the mutation.

Earlier this year, I met Gregg Johnson, Lyman and Aurelias great-great-great-great grandson. The genetic mutation that had traveled the Mormon Trail was now in Gregg, one of hundreds of the Hinmans descendants in the Utah area. Gregg is 61, with blue eyes and a white goatee. He frequently travels for his job as a craftsman for Mormon temples, but Utah is still home. Im just a Salt Lake City boy, he says.

The mutation that came with the Hinmans turns out to be a troublesome one. It lies dormant just long enough for people to have children and pass the mutation along, but not long enough to watch their children start their own lives. Greggs mother died of colon cancer at age 47. Her mother also died early of colon cancer, as did her mother. And who knows how many other relatives succumbed, stretching all the way back when the Hinmans came to Utah.

Gregg knows the history of this mutation in a gene called APC because hes spent more than 30 years in a series of studies at the University of Utahmade possible by a vast trove of Mormon genealogy records. Detailed family trees make it easier to trace genes that cause disease. After the Hinmans and other pioneers settled in the state, the Mormon church kept records that over time became an unusually detailed and complete genealogy. In the 1970s, university researchers had the foresight to combine these genealogy records with the state cancer registry to create what ultimately became the Utah Population Database. So when scientists began suspecting a genetic cause for cancer, they went hunting through the Mormon family trees.

They found patterns of deadly inheritance: BRCA1, one of the infamous cancer mutations, as well as mutations for cardiac arrhythmia and melanoma. And of course, they found the APC mutation behind the colon cancer in Greggs family. Utah became an accidental genetics laboratory. When Lyman hitched his wagon for Utah a century and a half ago, he ended up setting a course for colon cancer research.

The Church of Jesus Christ of Latter-day Saints, or the Mormon church, has one of the largest genealogy databases in the world. Today, it operates a family-history library just steps from the temple in downtown Salt Lake City, where banks of computers await visitors interested in digital genealogy records. The Church has physical records, too. They are stored on microfilm under 700 feet of rock in the climate-controlled Granite Mountain Records Vault, secured with doors so heavy theyre supposed to withstand a nuclear blast. Mormons are, by stereotype, family oriented, and this intense interest in family trees is a matter of theology.

Mormons believe in baptism of the deadincluding, in some cases, the long-dead. The baptisms are meant to give those who did not find the gospel of Jesus Christ in their mortal lives a chance at salvation, so that entire families stretching back generations might be reunited, forever together in Heaven. (This practice has attracted controversy, especially when the dead have included Holocaust victims.) The actual ceremonies are performed by proxy in temples. Members of the church line up and step forward for baptism as the name of an ancestor appears on a screen.

But first, you need names. So the church send crews around the world to collect records of the dead. In the 1970s, one such genealogy team looking for old parish records arrived in Parma, Italy, where a young American named Mark Skolnick was working on his Ph.D. thesis.

As luck would have it, Skolnick was using parish records to construct a genealogy database of his own. His thesis look at how genes spread as people from different Italian villages moved and intermarried. The study was a nice theoretical exercise, he says, but nothing practical really came of it. Meanwhile, because he spoke Italian, Skolnick helped translate for the Mormon team that came to microfilm parish records. I was a lowly gofer, he says. A great many things, however, would come out of this.

The Mormon church, Skolnick realized, was sitting on a vast trove of population genetics data. After finishing his thesis, he got a job at the University of Utah, where he set out to combine Mormon church records and cancer registry data into what would become the Utah Population Database. The genealogies and cancer records were a daunting amount of data, especially in an era when money was tight and computers were still the size of refrigerators. It was like going from one year to the next to try to get the funding, recalls Lisa Cannon-Albright, one of Skolnicks graduate students at the time. They worked out of an old VA hospital building, infested with bats and painted an awful pale green.

Getting all that data into the computer was a low-tech slog. Skolnick convinced the church to let him copy 186,000 pages of family records covering all the pioneers who came on the Mormon trail. The records went back eight generations and comprised about 1.6 million people in total. A team of typists, many of them genealogy enthusiasts, turned the handwritten records into a digital database. The data entry took the equivalent of 15 person-years.

As Skolnick was casting around for projects that could use the database, he met a young gastroenterologist named Randall Burt. Having grown up in Salt Lake City, Burt had recently returned to take up a fellowship at the University of Utah. Hes a gregarious guy, with a knack for putting patients facing colonoscopies at ease. I just think of him as a big teddy bear, one of his former patients told me. Greggs mother was one of Burts patients. By the time of her diagnosis, it was already too late to cure her colon cancer. She died a year later.

Burt and his colleagues were seeing other families like Greggs, where colon cancer had cut down whole branches of the family tree. Whats more, when you looked at the young, still-healthy members of these families, their colons were also strangecovered in dozens of mushroom-like growths called polyps that can turn cancerous. The doctors called it attenuated familial adenomatous polyposis. They didnt yet know what caused the profusion of polyps, but they reasoned if they could trace it through the family trees, they could identify who had the mutation and eventually the mutation itself.

In retrospect, finding a mutation whose effects are so stark does not sound difficult. And indeed, today it isnt especially difficult. But in the early 1980s, still two decades away from the first draft of a human genome, finding a gene was hardespecially if you werent so sure the gene even existed. Perhaps, as many thought at the time, cancer is simply a product of lifestyle or other environmental factors. Tracing a genetic mutation back to a common ancestor is no easy task either. Family trees get exponentially bigger as you go back in time: You have two parents, four grandparents, eight great grandparents, and so on. Eight generations back, you have hundreds of ancestors. A family tree for the Mormon pioneers is more like a tangled bush.

To prove that the polyps were hereditaryrather than just the unfortunate result of say, a family living in the same house drinking the same toxic waterthe researchers needed to find more families elsewhere that looked like Greggs. So they went looking through the Utah Population Database. With the family trees and cancer registry data, they could identify clusters of colon cancer. Then Burt and his team hit the road with his colon screening scopesdriving through Utah but also Idaho and Wyoming, where descendants of Mormon pioneers had settled. They set up in local hospitals and spent a day looking for colon polyps in the local population. These dairymen would come in between milking the cows, and the next day cowboys would come in, he says. And they went to family reunions. I cant tell you how many reunions where Ive been to eating corn and potato salad and talking polyps, says Burt. They took blood for genetic tests and invited patients to schedule future colon screenings.

It helped that the Mormons they were studying lived up to their reputation for friendliness. I dont know if people told you how receptive they are to research, says Cannon-Albright, who herself comes from a Mormon background. People recognize what you’re doing. It wont help me but itll help my kids and kids kids, and they were in just like that. Participating in the study required an invasive colon screening and a blood draw. Still, she says, Nobody ever said no.

Slowly, after hundreds of colon screenings and blood draws, a picture began to emerge. All of the families with this profusion of polyps seemed to have the exact same mutation, which pointed to a common ancestor. Those common ancestors, we now know, are Lyman and Aurelia. Its not clear which one of the couple had the gene, but they passed it along to at least two of their five children. In 1991, research groups in Utah and at Johns Hopkins simultaneously discovered the gene, which became known as APC.

In the decades since, this colon cancer research has kept going at University of Utah. Deborah Neklason, who took over Burts research after he retired, keeps a large white roll of paper in her office. She took it out when I visited and motioned me over to the big wood conference table, where she unfurled it and kept unfurling it, until half of it ran off the edge. It was the Hinmans pedigree on paper. Actually it was only part of it. The family had five branches: A, B, C, D, E, corresponding to each of Hinmans children, and this pedigree covered just branch E. Neklason found that she wanted to show me: a square with a black dot in the middle. It was Greggsquare for male, a dot to mark him as a carrier.

Neklasons office is in the universitys Huntsman Cancer Institute, a hospital and research center founded by businessman Jon Huntsman Sr. The Huntsmans wield unusual influence even for wealthy donorshence a recent and ugly power struggle with university administratorsand this influence is apparent even in campus geography. The universitys building climbs up the foothills on Salt Lake Citys eastern edge, and the Huntsman Cancer Institute, wrapped in green glass, sits at the campuss highest elevation. Its more alpine ski resort than hospital. Huntsman jokes that when cancer is cured, hes turning it into a Ritz-Carlton. The Utah Population Database, which began in the bat-infested old VA hospital, is set to move into the Huntsmans new wing later this year.

Last February, then Vice President Joe Biden spoke at the Huntsman to promote his cancer moonshot. The event took place in the institutes cafeteria, though calling it a hospital cafeteria is a bit of a disservice. Bon Appetit named it one of the worlds coolest workplace cafeterias, thanks to the floor-to-ceiling glass that overlook the mountains around Salt Lake City. On that day though, the windows were blacked out, per the request of the Secret Service.

Gregg spoke at the event, too, and he was starstruck. (Joe is Joe. Hes cool. I would have voted for him in a heartbeat.) He swallowed his nervousness and began telling his familys story, starting with his mothers diagnosis.

After his mothers death, Gregg began seeing Burt for regular colonoscopies. Polyps, if removed early enough, never become cancerous. Each time Gregg had a colonoscopy, he got hundreds of polyps snipped off. Hes been doing this long enough that he can hold forth about how it used to be. It used be, he says, you had to drink an Imperial gallon, five quarts of saline solution, within an hour and keep it down. He paused to grimace. Just thinking about it now makes my skin crawl. The prep for colonoscopies requires much less liquid now, and it tastes a lot better. Stop putting off your colonoscopy, he added, slipping into the role he often plays for his family and friends, encouraging people to get tested.

Gregg has two sons, Dan and Patrick. The mutation has a 50-50 chance of being passed on, and the laws of chance were followed perfectly in this case: Dan, the older son, has the mutation, and Patrick does not. Dan is 32 now, at the point where hes thinking about having kids. Having watched his father live a pretty much normal life despite this ticking time bomb of a mutation has given him an equanimous outlook. That doesnt affect my decision at all, he says.

In the future, Dan might not need such regular colonoscopies either. Gregg participated in a recent clinical trial using two drugs called sulindac and erlotinib to prevent polyps in the duodenum, a section of the small intestine that is difficult to reach with a scope. It worked beautifully for shrinking polyps, though it did have some side effects that are being ironed out in a follow-up trial. Greggs digestive tract was the poster child for the initial study. The advancements are amazing, says Dan, It’s so cool, even in the time that Dad’s started with this. In this era of hype about precision medicine, Greggs family shows its poweras its already being applied.

The particular mutation in Greggs family only accounts for a tiny sliver of colon cancers in the U.S., but the research on his family may have a much larger impact. The APC gene is known as a tumor suppressor gene. Greggs family members are born with a mutation in APC, but it is also possible and common to acquire a mutation in the APC gene over ones lifetime, through random chance or environmental exposure. Eighty percent of all colon cancers have such a mutation. Its such an early step in colon cancer, its perfect target for prevention, says Neklason. If something can prevent colon cancer in this high-risk family, then perhaps it could prevent it in the rest of us too. Thats in part why the clinical trial results were so exciting.

The early successes of the Utah Population Database with cancer demonstrated the power of genealogy. Geneticists elsewhere have since used family trees to study other inherited diseases. In Iceland, where the population is small and isolated and ancestry can be traced back hundreds of years, a 20-year-old company called deCODE has collected samples from about half of all Icelanders and published a suite of papers. Researchers have also recently started exploring the massive crowdfunded genealogies that are so popular online.

The Utah Population Database is growing, too. It now has medical records from Utahs two major healthcare providers as well as state birth and death records. More recently, it inked a deal with the Mormon church to add 100 million new records from the churchs genealogy into the database. Neklason hopes to use those records to go even further back and find connections between the Hinmans and a dozen or so families in New York, Texas, and other states that have since been discovered with the same colon cancer mutation. But its difficult work, because older pre-Mormon pioneer records are less unreliable. Husbands, for example, often remarried after their first or even second wives died and it can be difficult to tell who gave birth to which child. (Mothers are well-documented in the Mormon records, and the researchers tracing the Hinmans descendants did not actually encounter polygamy, which was practiced by only a minority of men in the 19th century.) A connection Neklason originally thought she found between the Utah and New York families is ambiguous because of conflicting information over which of two wives is the mother of a child that could have linked the two branches.

Thirty years into the universitys colon cancer research, Gregg can tell the story as well as anyone. Hes seen its entire arc. Skolnick and Burt are both retired now. Skolnick spends half his time in San Diego and the other half in Parma, Italywhere he met those Mormon genealogy hunters and his Italian wife. Burt is retired, too. Hes currently living in Frankfurt, Germany, where he advises on the medical care of Mormon missionaries in Europe. Gregg has been around as long as anyone.I feel like a bit of an insider even though Im just a lab rat, says Gregg. Thats why he was speaking in front of Biden that day.

The events organizers had blown up part of his family tree on the screen behind him, a small section of what Neklason had showed me in her office. His mother and grandmothers generations were full of black squares and circles, indicating deaths from colon cancer. His generation, now reaching their 60s, were all still alive and cancer-free thank to their colonoscopies. Right there just seeing the chart, it was like holy cow it really does work, Gregg later recalled to me in his living room.

His mother, Sandra, died in 1983before genetic testing, before anyone knew anything about the APC mutation lurking in her family for so long. Gregg had gotten married just a few months before. She was already sick at his wedding. She would not get to see her grandsons, the first of whom was born a year later. From my standpoint, he told me, Ive outlived her by about 15 years. He said this as he leaned back into his chair, his grandsons train tracks sprawled on the coffee table in front of us.

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What Mormon Family Trees Tell Us About Cancer – The Atlantic

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