"Wn a rare joint action with attorneys general for each of the 50 states, the Federal Trade Commission says four cancer charities run by extended members of the same family conned donors out of $187 million from 2008 through 2012 and spent almost nothing to help actual cancer patients.
Each of the charities charged were the subject of extensive reporting by CNN in 2013. And in each instance, none of the four charities would comment. We were ordered out of the building at the Cancer Fund of America in Knoxville, Tennessee, and were the object of an obscene gesture by the CEO of The Breast Cancer Society in Mesa, Arizona.
The Cancer Fund of America is run by James Reynolds Sr. His son James Reynolds Jr. is the CEO of the Breast Cancer Society. Another charity, the Children's Cancer Fund of America, is run by Rose Perkins, the ex-wife of the elder James Reynolds. He's also the CEO of the fourth charity, Cancer Support Services."
The link between nuclear power and cancer is real, writes Chris Busby, and revealed in the UK's cancer statistics - if only you look for it. Previous approaches have focused on rare cancers over large, poorly selected populations. But look at common cancers among those most exposed to nuclear radiation, and the statistical evidence is overwhelming.
"A new type of blood test is starting to transform cancer treatment, sparing some patients the surgical and needle biopsies long needed to guide their care.
The tests, called liquid biopsies, capture cancer cells or DNA that tumors shed into the blood, instead of taking tissue from the tumor itself. A lot is still unknown about the value of these tests, but many doctors think they are a big advance that could make personalized medicine possible for far more people.
They give the first noninvasive way to repeatedly sample a cancer so doctors can profile its genes, target drugs to mutations, tell quickly whether treatment is working, and adjust it as the cancer evolves.
Two years ago, these tests were rarely used except in research. Now, several are sold, more than a dozen are in development, and some doctors are using them in routine care."
"A panel of veterans and dependents questioned agency officials this week on behalf of victims of contaminated water at Camp Lejeune.
The Community Assistance Panel, known as CAP, held an open dialogue session Wednesday with representatives from Veterans Affairs (VA), Agency for Toxic Substances and Disease Registry (ATSDR) and Department of Defense about discrepancies in the VA claims process, current status of health studies and future actions. CAP members work directly with the Marines, sailors and their families — an estimated one million people — who have been affected by exposure, occurring approximately from 1957 to 1989.
Several of the members are victims themselves.
Mike Partain, a dependent of a Marine who served at Camp Lejeune, is one of 90 men diagnosed with breast cancer from the exposure."
Susan Zager's insight:
CAP was created by the CDC in order to represent the victims of the worst water contamination case in United States history at Camp Lejeune. For more information about the various diseases, victims and meetings by CAP as well as breast cancer exposure go to: https://lejeunecap.wordpress.com/.
Israel has made an exciting breakthrough in cancer research, offering a glimmer of hope that a cure will be found.
The two crucial proteins, known as KPC1 and p50, were found during ongoing research on the ubiquitin system, an important and vital pathway in the life of the cell, which is responsible for the degradation of defective proteins that could damage the cell if not removed. The ubiquitin system tags these proteins and sends them for destruction in the cellular complex known as the proteasome. The system also removes functional and healthy proteins that are no longer needed, thus regulating the processes that these proteins control.
High levels of KPC1 (which generates p50) and p50 (the product of the process), together with other processes in the cell, suppress the malignant growth and apparently protect the healthy tissue.
The research was conducted on models of human tumors grown in mice, as well as on samples of human tumors, and a strong connection was discovered between the suppression of malignancy and the level of the two proteins, clearly indicating that the increased presence of KPC1 and p50 in the tissue can protect it from cancerous tumors."
"Women around the world make difficult decisions about breast cancer every day. In 2013, Angelina Jolie made the difficult decision to have a double mastectomy and to make that very personal decision public.
Of course, she did not choose to remove healthy body parts on a whim. There was scientific evidence that she had a rare genetic mutation and other characteristics that put her at very high risk of getting breast and ovarian cancer.
Angelina Jolie reveals she had double mastectomy
The possibilities open to her to minimize that risk were not at all good: vigilance ... or chemoprevention drugs; vigilance ... or surgery; and vigilance. All but the last came with their own harms.
Last week, actress Rita Wilson made headlines when she announced her breast cancer. She has a rare condition that put her at higher than average risk of getting breast cancer, pleomorphic lobular cancer in situ. A biopsy was negative, but she had a second, then a third pathology opinion that showed breast cancer. She had a double mastectomy.
Susan Zager's insight:
Fran Visco makes the important point that everyone must understand their personal risks when it comes to deciding about surgery and/or treatments are relevant to their specific cases.
"In the latest push to expand access to clinical trial data, the World Health Organization has released a new position statement calling for companies to publish all research studies and suggested specific timetables for making the information available.
The move comes amid growing clamor from academics and consumer groups to press drug and device makers to release trial data. At issue is the ability for researchers to independently verify study results and, consequently, improve patient treatments that can lead to better health and lower costs.
Concerns have been heightened following various safety scandals that revealed trial data for some products was never fully published or disclosed. In recent months, regulators in the U.S. and Europe have responded by releasing new rules designed to widen access. And several drug makers, in varying degrees, have taken steps to release trial data (see here and here).
In explaining its position, the WHO notes that the failure to fully report trial data can foster misinformation, raise health care costs and distort public policy. The agency, which also published a rationale in the PLOS Medicine journal, also maintains that “it is unethical to conduct human research without publication and dissemination of the results of that research.”
Specifically, the WHO says companies should update information already provided to trial registries and submit findings for publication in peer-reviewed journals within 12 months of finishing studies. The agency also says companies should ensure there is so-called ‘open access’ publication, which refers to freely available access. Moreover, the WHO adds that results from past studies should also be disclosed."
"Rita Wilson is sharing some difficult and very personal news: she was recently diagnosed with breast cancer and has undergone a double mastectomy and reconstructive surgery.
In an exclusive statement to PEOPLE, the actress, 58, reveals the diagnosis and how she feels "blessed" to have the love and support of her husband, Tom Hanks, friends, family and the doctors who saved her life.
"I have taken a leave from the play Fish in the Dark to deal with a personal health issue," reveals Wilson, who will return to the Broadway play on May 5. "Last week, with my husband by my side, and with the love and support of family and friends, I underwent a bilateral mastectomy and reconstruction for breast cancer after a diagnosis of invasive lobular carcinoma. I am recovering and most importantly, expected to make a full recovery. Why? Because I caught this early, have excellent doctors and because I got a second opinion.
"I have had an underlying condition of LCIS, (lobular carcinoma in situ) which has been vigilantly monitored through yearly mammograms and breast MRIs. Recently, after two surgical breast biopsies, PLCIS (pleomorphic carcinoma in situ) was discovered. I mention this because there is much unknown about PLCIS and it is often found alongside DCIS (ductal carcinoma in situ). I was relieved when the pathology showed no cancer."
Susan Zager's insight:
Rita is very open about her experience with breast cancer and shows how important it is to get a second opinion.
April 18-22, 2015Pennsylvania Convention CenterPhiladelphia, Pennsylvania Program Committee ChairpersonLewis C. Cantley, Sandra and Edward Meyer Cancer Center at Weill Cornell Medical College, New York, New York View Updated Program / Itinerary Planner[Abstract text now available] Download the Annual Meeting AppDownload Daily Calendar Message from AACR President, Carlos L. ArteagaMessage from Program Committee Chairperson, Lewis C. CantleyRegister NowThe AACR Annual Meeting 2015 will highlight the latest, most exciting discoveries in every area of cancer research and will provide a unique opportunity for investigators from all over the world to meet, interact, and share their insights. This year’s meeting theme – “Bringing Cancer Discoveries to Patients” – underscores the vital and inextricable link between discovery and treatment, and it reinforces the fact that research underpins all the progress we are making in the field toward cancer cures. For everyone – presenters, early-career and established researchers, clinicians, and advocates – the Annual Meeting is a must-attend event. We are developing a comprehensive and multidisciplinary program, with an outstanding roster of speakers, hundreds of invited talks, and more than 6,000 proffered papers from researchers all over the world.We want to thank the Program Committee Co-Chairpersons and Education Committee members for their incredible guidance in shaping an innovative program that will be both enjoyable and educational to all attendees, and attract major media attention from around the world.Together we are making astounding progress in the fight against cancer. It is taking less time than ever for our research to be translated into improved prevention, diagnosis, and treatment strategies for patients. This is an exciting time for cancer research. By attending the AACR Annual Meeting, you will find ideas, people, and moments that provide you with renewed energy, inspiration, and focus in your work. We look forward to welcoming you to Philadelphia."
In a paper published on Wednesday in the New England Journal of Medicine, researchers have brought forward the argument that genomic test for detecting breast cancer should only be offered, if its clinical validity has been established.
"There’s nothing glamorous about finding cancer-causing chemicals in our favorite mascara, eye liner or powder. Tell L’Oreal: we demand cosmetics without cancer!
The Campaign for Safe Cosmetics’ investigation of L’Oreal products revealed a shocking use of carcinogens in its eye makeup. But that’s not the half of it! We also found cancer-causing chemicals in anti-aging creams, nail polish and hair products made by L’Oreal’s most iconic brands Maybelline and Garnier.
Kids’ products aren’t free of cancer-causing chemicals either. The Campaign found DMDM hydantoin in L’Oreal Kids 2-in-1 shampoos, a chemical that releases the carcinogen formaldehyde to preserve the product."
Susan Zager's insight:
Signing this petition is easy and will only take a minute.
"Research findings from Lund University in Sweden now provide new hope for a way of detecting metastases significantly earlier than is currently possible.
The chances of being cured of breast cancer have increased in recent decades, however if the tumour has metastasised, the disease remains essentially incurable. One reason for this could be that the metastases are detected late, after they have grown enough to cause symptoms or be seen on a radiological scan. If they could be found sooner, it might be possible to treat the new tumours. Research findings from Lund University in Sweden now provide new hope for a way of detecting metastases significantly earlier than is currently possible.
The discovery was made by a research team led by Lao Saal, M.D. Ph.D, and is based on what is known as cell-free circulating DNA – small fragments of genetic material from different cells which circulate in the blood. It is normal to have low amounts of such DNA material in the blood, but in the case of diseases such as cancer, these amounts can increase. Furthermore, in cancer patients, the circulating DNA contains the genetic mutations which are specific to the tumor.
Lao Saal and his colleagues used previously gathered material from a breast cancer study which has been underway in Lund since 2002. The material contained samples from surgically removed tumours from patients with non-metastatic disease as well as blood samples taken from the patients at regular intervals during the years in which they were followed up.
The tumour samples contained many genetic changes, which constituted a "fingerprint" specific to each tumour. Researchers then looked in the blood samples for circulating tumour DNA (ctDNA) with the same fingerprint. Although the study is fairly small – it is based on material from only 20 women –the results are striking."
Below-normal amounts of the protein TGFBR2 may be predictive of breast cancer resistance to the anti-estrogen drug tamoxifen, according to study results.Estrogen is a hormone that forces cells to grow and divide while the transforming growth factor (TGF)-beta cell signaling pathway exerts effects of growth-inhibition, according to study background. Both estrogen and TGF-beta signaling pathways
"May 1, 2015 - Washington—Senators Dianne Feinstein (D-Calif.) and Mike Enzi (R-Wyo.) this week introduced a bill to renew congressional approval for the breast cancer research stamp, which has raised $80.4 million for breast cancer research since its creation in 1998. Representatives Jackie Speier (D-Calif.) and Cynthia Lummis (R-Wyo.) introduced companion legislation in the House of Representatives.
The breast cancer research stamp provides first-class postage and currently costs 60 cents. The additional 11 cents over the regular postal rate helps fund breast cancer research at the National Institutes of Health and the Medical Research Program at the Department of Defense. This bill would reauthorize the stamp through 2019. If the stamp is not reauthorized by the end of the year, it will no longer be available to the public.
“Breast cancer is the most commonly diagnosed cancer in women, claiming 40,000 lives each year,” said Senator Feinstein. “This stamp offers Americans a simple way to contribute to breast cancer research. The research funded by the stamp over the past 17 years has led to advances in screening, diagnosis and treatment—we must ensure this research continues.”
A new breast cancer gene has been identified in a study led by Women's College Hospital (WCH) researcher Dr. Mohammad Akbari, who is also an assistant professor with the Dalla Lana School of Public Health at the University of Toronto. The study, which was published online today in Nature Genetics, describes ...
A new test that analyzes all compounds (metabolites) in a blood sample can predict with 80 percent accuracy the likelihood a woman will develop breast cancer within the next two to five years.
While the new method, called a metabolic blood profile, is not perfect, says Rasmus Bro, a professor of chemometrics at the University of Copenhagen, it appears to offer some advantages over mammography, which can detect newly developed breast cancer with a sensitivity of 75 percent.
“The method is better than mammography, which can only be used when the disease has already occurred,” says Bro, who stresses that the method has been tested and validated only for a single population (cohort) and needs to be validated more widely before it can be used practically.
Nevertheless, the method could create a paradigm shift in early diagnosis of breast cancer as well as other diseases.
“The potential is that we can detect a disease like breast cancer much earlier than today. This is important as it is easier to treat if you discover it early,” says Lars Ove Dragsted, a professor of biomedicine.
The method was developed in cooperation with the Danish Cancer Society, and the study was recently published in Metabolomics.
The new approach involves analyzing all compounds in a blood sample instead of a single biomarker.
“When a huge amount of relevant measurements from many individuals is used to assess health risks—here, breast cancer—it creates very high quality information. The more measurements our analyses contain, the better the model handles complex problems,” explains Bro."
Susan Zager's insight:
This has only been studied on a small cohort but the concept should be looked at with a larger study. nload-v2.springer.com/static/pdf/829/art%253A10.1007%252Fs11306-015-0793-8.pdf?token2=exp=1429294699~acl=%2Fstatic%2Fpdf%2F829%2Fart%25253A10.1007%25252Fs11306-015-0793-8.pdf*~hmac=8d0728ba1061ba050a7cc70bf874898743170ab85d01188834e36ae5e8c76e28
"Uninsured cancer patients are paying anywhere from 2 to 43 times what Medicare would pay for chemotherapy drugs, according to a new study from the University of North Carolina at Chapel Hill. These findings were published by Dusetzina et al in Health Affairs.
Uninsured patients who did not negotiate the billed amounts could expect to pay $6,711 for an infusion of the colorectal cancer drug oxaliplatin. However, Medicare and private health plans only pay $3,090 and $3,616 for the same drug, respectively.
Although uninsured cancer patients paid on average two times more than Medicare paid for expensive chemotherapy drugs, very high payment differences were seen for drugs that were quite inexpensive on Medicare. For example, carboplatin was estimated at $26 for one infusion with Medicare, but the estimate for uninsured patients was $1,124."
Susan Zager's insight:
This is a complex issue to solve but the problems with the cost of cancer medications and the disparities between pricing clearly are disturbing.
"PRLog - April 10, 2015 - NEW YORK -- The Metastatic Breast Cancer Network (MBCN) announced the 2015 recipients of its Metastatic Breast Cancer Research Leadership Awards: Dr. Andrew Ewald, associate professor in the Departments of Cell Biology and Oncology at the Johns Hopkins University School of Medicine and Dr. Matthew Ellis, the director of the Lester and Sue Smith Breast Center at Baylor College of Medicine.
The Metastatic Breast Cancer Network (MBCN), an all-volunteer, patient-led organization, has long advocated for more focused metastatic breast cancer research that improves outcomes in the clinic for patients with metastatic breast cancer, an incurable disease that ends the lives of 108 people every day of the year.
“In 2014, MBCN made a commitment that all memorial contributions made to MBCN would go to funding metastatic research,” said Shirley Mertz, President. “We are pleased to present leadership awards of $50,000 each to two individuals whose work contributes significantly to understanding basic knowledge about the process of metastasis and to improving how patients are treated.”
Mertz, living with metastatic breast cancer since 2003, noted that although metastatic breast cancer is responsible for virtually every breast cancer death, it receives only a tiny percentage of the billons dedicated to breast cancer research. “MBCN is a founding member of The Metastatic Breast Cancer Alliance,” Mertz said. “The Alliance’s Metastatic Breast Cancer Landscape Analysis released in October 2014 found that metastatic focused research made up only 7% of the $15 billion invested in breast cancer research from 2000 to 2013 by the major governmental and nonprofit funders from North America and the United Kingdom. Breast cancer remains the second leading cause of cancer death for women in the US, and it is the leading cause of cancer death for women globally. We know research "
Susan Zager's insight:
There's tons of great information in this article about the importance of metastatic breast cancer research. For more information about the MBCN go to: http://mbcn.org/
"Wealthier women who live in communities with the greatest income divide between rich and poor had better access to a new genetic test that can determine the most effective form of treatment for early-stage breast cancer, according to a new study (link is password-protected) by the UCLA Center for Health Policy Research, Harvard Medical School’s Brigham and Women’s Hospital and Aetna. The study, published in the April issue of the journal Health Affairs, also indicated that only a small minority of women with breast cancer received the test at all.
“Our study shows that even among women who have insurance, where they live and how income is distributed in their community were closely linked to their chance of getting access to an effective innovation in the early years of its diffusion,” said Ninez Ponce, associate director of the UCLA Center for Health Policy Research and lead author of the study.
The Gene Expression Profiling test is an early example of a “precision medicine” genomic test that estimates a patient’s risk of having a recurrence of a disease. According to current medical evidence, a woman with early-stage, estrogen-receptor–positive, lymph-node–negative breast cancer with a low-risk GEP test score may not benefit from adding chemotherapy to her treatment plan, while a woman with a high-risk score would benefit and should consider including chemotherapy in her treatment. More than 100,000 women are diagnosed with this type of breast cancer every year.
The study is based on a survey of 1,847 women between the ages of 35 of 64 who were insured through an Aetna health plan and were newly diagnosed with breast cancer in 2006 and 2007. Of those, 235 (12.7 percent) had the GEP test."
"Do you ever wonder if what you do matters? Do you ever wonder if your voice is ever really heard? Who doesn’t, right? Sometimes I wonder about these things too. Sometimes I wonder if my little old blog makes any difference at all – I mean a real difference. Or am I mostly just preaching to the choir. After all, it’s mostly people impacted by cancer who read cancer blogs, who read my blog. Don’t get me wrong. I love and appreciate all of you, my dear readers; but for the most part, if you’re reading my blog, you probably pretty much agree with most of the stuff I say. You’re probably already very much aware of the needs of the metastatic breast cancer community. So does what I say or you say matter?
Yes. Advocacy of all kinds matters. I believe that. I have to believe that.
That’s what I remind myself when I grow weary and feel like all I do is repeat myself (especially during Breast Cancer Awareness Month). Each of us needs an advocacy niche and I don’t mean just in Cancer-land. Everyone needs something or someone to advocate for. For me one of these things is raising genuine awareness about the reality of metastatic breast cancer, the only kind that kills.
So every #MetsMonday (as well as others days, too, of course) I will keep “stomping”. I will keep advocating.
Because stomping matters. Advocacy matters. Making noise matters. Bringing attention to realities of metastatic disease matters. Putting real faces of real women and real men to the numbers matters. Sharing their stories matters. Remembering lives taken and lives presently struggling with metastatic disease matters. Reminding whoever is listening that real lives are at stake matters. Changing ingrained pink ribbon messaging matters, even if it’s a slow evolution. Informing listeners about the entire spectrum of breast cancer matters, even if it’s hard and makes some uncomfortable. Striving to generate more research dollars specific to metastatic disease matters.
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