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March 28, 2016
How Could Congress Foot-Drag on Cancer Clusters?
"Disease cluster" is the term used to describe communities that experience unexpected increases in the incidence of birth defects, cancer, and other diseases that may be attributable to a common cause. This has been proven to be the case in many communities nationwide where environmental or toxic waste in air or water has been demonstrated to cause disease among people who live in close proximity and within a common time period.
The Centers for Disease Control (CDC) updated its guidelines for investigating cancer clusters in 2013, with particular focus on the techniques to be used in investigating such clusters and for communicating about them with the public. Their intent was to provide public health agencies with the needed decision support tools to promote appropriate and effective local action that would be transparent and built public trust.
In 2011, Sen. Barbara Boxer from California introduced a bill called the Strengthening Protections for Children and Communities from Disease Clusters Act. The bill was intended to help communities to investigate and mount solutions to suspected disease clusters. Despite support from a number of nonprofits, that bill went nowhere, despite its intention to protect our citizens from the impacts of air and water contamination on their health.
A similar bill was re-introduced in 2013, with co-sponsorship of Senator Mike Crapo of Idaho. It went into The Environment and Public Health Committee, where Sen. Boxer is the ranking member. It went nowhere.
A bill was re-introduced on March 12, 2015 as S. 725, the Alan Reinstein and Trevor Schaefer Toxic Chemical Protection Act. It is now in committee, where it has sat for a full year, despite having five co-sponsors from varying states. It is being treated as a bill to amend the Toxic Substances Control Act.
Clusters of cancer and other diseases aren't going away. In fact, a map of existing cancer clusters, provided by Erin Brockovitch, should raise widespread concern nationwide:
It is only by pressing our legislators to act on this bill that we will be able to protect ourselves, our family members, and our friends from potentially fatal diseases that could be prevented if we would just stand up to the poisons in our environment. Isn't it time to begin holding our legislators accountable for things that matter, like whether our children are being poisoned?
March 18, 2016
Medical Marijuana May Be Coming of Age
MedPage Today, an electronic medical newsletter, this week cited an article from an investment newsletter (called Seeking Alpha) about pharmaceutical companies' clinical trials for cannabanoid products. Applications for such products include some orphan diseases (currently lacking proven treatments) as well as a range of conditions including cancer, epilepsy, and schizophrenia. Cancer-related products in the pipelines of a variety of companies include treatment for cancer pain, Recurrent Glioblastoma Multiforme, ovarian and pancreatic cancers, and chemotherapy-induced vomiting. The evolution of such products has been marked by a variety of ups and downs, but the general pattern is forward and promising for future approvals, especially for pain control products (like Sativex) that are currently in Phase 3 clinical trials.
March 2, 2016
Research Finding: Potential Mesothelioma Treatment Targets
For those who are suffering from Mesothelioma, one of the cancers with few treatment options, a new development offers future hope. The email newsletter MedPage Today revealed on February 29 that the International Mesothelioma Program at Brigham and Women's Hospital in Boston, working with researchers from Genentech, has discovered some previously unknown genetic mutations in mesothelioma tumors that may offer potential treatments, some of them in the short term.
Mesothelioma is a rare cancer with a 5-10% survival rate. The primary question for patients isn't "How can I be cured?," but rather "How long do I have?" The researchers analyzed 216 malignant pleural mesothelioma (MPM) tumor samples to look for common genetic mutations that might be targeted by existing drugs. The most striking of the findings was that the genetic signature of the mutations most resemble those in ovarian cancer--another problem disease.
Photo from Photobucket. Click here for others.
The research team's hope is that this finding will help in both the diagnostic and treatment processes. The technical aspects of the study may be hard for non-scientists to understand, but the potential seems to be real for those patients who get their tumors genetically sequenced in search of actionable mutations.
February 24, 2016
Creating Meaning from the Unthinkable
The words "cancer" and "kids" represent a horrifying combination for many of us. My Huffington Post piece released yesterday picks up on that issue through the story of Oliver Strong and his family. They are seeking meaning by seeking out the causes of pediatric cancers, which appear to be concentrated in a cluster in the Miami area. If I say so myself, the story is compelling, and the actions his family is taking are uplifting. They illustrate how cancer caregivers try to create meaning as they heal. Take a read, and please refer others to this article:
January 29, 2016
Cancer Researchers Find a "First" Cancer Cell
Cancer's origins in the body remain a mystery to researchers. Yet researchers at Boston Children's Hospital (Dr. Leonard Zon and Dr. Charles K. Kaufman and their colleagues) published in the journal Science their discovery of a single cell in a normal and healthy zebra fish that turned cancerous. Their results were described in the New York Times on January 29 in an article "A Single Cell Shines New Light on How Cancers Develop," by Gina Kolata.
Zebra fish are often used by cancer researchers because they are transparent and reproduce quickly. The transparency allows researchers to see what's happening "real time" inside the fish without cutting it open.
The Zon Laboratory discovered a gene in a zebra fish embryo that creates the fish skin and includes the ability to turn cancerous. When the fish is born, that gene is turned off and the cells grow normally. However, occasionally the gene turns on again and produces a tumor in an adult fish. By fusing the gene to a fluorescent substance that would light up when the gene went on inside a cell, the scientists were able to demonstrate that every time the light went on, the fish developed melanoma. The team's hypothesis is that the cell returned to an embryonic state, where it became cancerous and then overrode the normal off switch so it could grow and spread the cancer through the body of the fish.
This is a fascinating idea that offers promise for learning how melanoma and other cells become cancerous. Researchers from other institutions are calling this a significant advance in the field.
Kolata's story is easy reading for research laymen, but fascinating for anyone interested in learning more about the kinds of developments that research funding is making possible. These kinds of discoveries are expensive and take considerable time, but they offer clues about ways of controlling melanoma and other cancers in the future.
January 14, 2016
Finally, a "Moonshot" Against Cancer!
When President Obama announced the cancer moonshot initiative at the State of the Union speech, thousands of cancer patients, survivors, and caregivers cheered and cried at the same time. Then the New York Times on January 14 gave us a dose of sobriety in Gina Kolata's and Gardiner Harris' article entitled "'Moonshot' to Cure Cancer, to Be Led by Biden, Relies on Outmoded View of Disease."
The idea of an intense government assault on cancer isn't new. In fact, the first "war on cancer" happened nearly 50 years ago and didn't achieve its goal. Yet it is true that the right kind of leadership from within the government can produce meaningful impacts on the disease. There's no doubt that for Joe Biden, it's personal. Late in 2015, the Vice President helped negotiate a $264 million increase in funding for the National Cancer Institute, what Kolata and Harris termed "the largest in a decade for an agency that has been squeezed by static budgets in recent years."
Further, the variety of developments that have come to fruition in the past decade is helping us to understand the vast diversity of diseases that the word "cancer" represents and therefore the complexity of trying to "cure cancer." Our new insights about the complexity of curing cancer have driven a variety of research developments and emerging therapies that are targeted toward specific genetic mutations and activating the body's immune system to attack cancer. Such work is highlighting opportunities to find genetic mutations that exist in multiple kinds of cancers and suggests the potential for applying therapies proven for one type of cancer to treating cancers of other types.
Data sharing will also be an important part of the moonshot initiative, so that researchers can build on each others' ideas. Stand Up 2 Cancer, an organization launched within the entertainment industry, has already demonstrated how fast-track initiatives based on collaboration among teams from different research labs can bring new developments to market faster.
By increasing cancer research funding, driving more collaboration within the field, instituting more cancer-friendly Medicare payment guidelines, and streamlining FDA approval requirements, this moonshot initiative may be able to do what the earlier "war on cancer" couldn't: create a world in which cancer is managed as a chronic (rather than so-often fatal) disease and in which the treatments don't torture the patients they're intended to help.
In the end, all we can do as individuals is keep contributing to cancer research, voting for candidates who support intensified cancer research, and hoping that this latest initiative will fulfill our wildest hopes and dreams for controlling this equal-opportunity killer. My New Year's wish is for every current and future cancer patient live to enjoy the label "NED," which stands for "no evidence of disease."
January 5, 2016
Expedited FDA Drug Approvals Bring Hope to Cancer Patients
The Food and Drug Administration has just announced that "In 2015, FDA’s Center for Drug Evaluation and Research (CDER) approved 45 novel new therapies – significantly more than the average of 28 we have approved during the previous nine years of this decade." Novel new drugs, as defined by the FDA, are innovations that serve needs that were previously unserved or otherwise help advance patient care and public health.
The announcement states that 60% of the new drugs were treated with expedited review as Fast Track (31%), Breakthroughs (22%), Priority Review (53%), and/or Accelerated Approval (13%). In fact, 87% of these approvals were processed on their first approval cycle, without requests for additional information that would have delayed approval. 64% received approval in the United States before getting approval in any other country. The FDA says that it focuses not only on quantity of drugs approved, but also on their quality. In other words, there is no indication that expedited approval has in any way jeopardized patient safety.
While not all of these drugs are applicable to cancer, the 2015 wave of approvals reflects progress in getting bureaucracy out of the way of healing. Many of these new drugs represent new molecular structures while others represent novel biologics; some are first in class. New cancer treatments have been approved for advanced metastatic breast cancer, pediatric high-risk neuroblastoma (brain tumors), multiple myeloma, non-small cell lung cancer, metastatic melanoma, metastatic colorectal cancer, and soft tissue carcinoma.
It is striking that the rate of filings for such expedited approvals has not increased at the same rate. Filings for New Molecular Entities and Biologic License Applications only average 35 per year over the past year. That suggests a great need for all of us to accelerate funding of cancer research that will bring more such dramatic progress. Every reader of this blog can help, either by contributing to private cancer research or by pressing Congress to keep increasing cancer research funding.
We can make this happen, if each of us affected by cancer just cares enough to take action.
December 30, 2015
Immunotherapy Cited by Oncologists as a "Game-Changer"
MedPage Today, an oncology/hematology newsletter, cited on December 27 the results of a survey of 50 oncologists and hematologists about what they see as the important game-changing pharmaceutical advances of 2015. Of the respondents, 74% cited immunotherapy drugs as the most important developments that are coming to the fore in their efforts to control cancer in their patients.
A number of these treatments are extending survival time without increasing toxicity to the patient, and others which have been successful for one kind of cancer are proving transferrable to other types. The respondents cited pecific targeted therapies and FDA approval of numerous "checkpoint inhibitors" which can be turned on or off to cause the immune system to attack the cancer. Sometimes cancer "inhibits" the ability of the immune system to attack the invading cells, and turning off that reaction can help the body to fight the disease.
These developments are exciting and potentially life-saving. Stay tuned, and "watch this space"!
December 14, 2015
E-Cigarettes Found to Contain Hidden Toxins
STAT, a new online health news service, on December 8 (2015) released a story revealing that 80% of the brands of flavored e-cigarettes--which are designed to appeal to people seeking to break the smoking habit and particularly to appeal to children and young adults--contain numerous toxic chemicals, the worst of which is Diacetyl. This chemical causes a condition called "popcorn lung," which is irreversible and potentially requires a lung transplant if the smoker is to survive. It is particularly powerful when heated. Potential buyers who ight see titles like Cupcake, Fruit Squirts, and Oatmeal Cookie can be tricked into thinking this is a safe and entertaining substitute for cigarettes.
If you or a loved one is using e-cigarettes today, you might want to check out the source article at http://www.statnews.com/2015/12/08/e-cigarette-flavorings-dangerous-chemicals/.
December 9, 2015
FDA Approves Device to Reduce Chemo-Induced Hair Loss
One of the more challenging side effects of many chemotherapy treatments for many cancer patients, regardless of age or gender, is hair loss. The negative psychological impact of hair loss can be significant and cause both depression and erosion of self-concept, thereby adding to the stress of cancer treatment.
In March of this year, I shared some promising developments to help reduce hair loss. The idea of cooling the chemo-patient's scalp so the blood there will absorb less of the toxic chemi ias been explored since the mid-1990s. Now a new form of the "cool cap" to help reduce chemo-triggered hair loss was just approved by the Food and Drug Administration. For readers who are seeking additional information, I'm repeating below my blog post of March 11, 2015 in the hopes that it will help some of my readers:
* * *
It's not just women who lament losing their hair when faced with chemotherapy treatments, most of which are hostile to hair. Even four-year-old Eric was upset to have to shave his head in advance of his aggressive treatment for a rare lymphoma.
Well, the New York Times (Tara Parker-Pope) wrote on March 9, 2015 of a new treatment that applies a cold cap to the scalp before, during, and for two hours after a chemotherapy infusion. Apparently the concept has been in practice for over 20 years, but new and improved technology has just gone through its first clinical trial and isn't yet available in most hospitals. It's a good sign of a new development that offers both the opportunity for those in treatments to boost their self-esteem during chemo and increased privacy for those who don't want to walk around virtually advertising, through their baldness, that they're in cancer treatment.
For more information about the concept, history, and alternative types of caps that are being introduced to medical centers for rental, you may want to visit The Rapunzel Project. This site also offers information about Cold Caps Assistance Projects, which helps patients to cover around half of the $600 per month rental expense, depending on need. For access to the supporting research, information about how to get a "starter kit," tips for hair care during chemotherapy using the caps, and a list of the hospitals currently either offering cold cap therapies or with the needed freezer equipment to do so, see the CCAPS site.
Also, you may want to see The Cancer Knowledge Network's blog (April 17, 2015) on this topic.
November 24, 2015
Lives Changed within 36 Hours
We all think it couldn't happen to our family, losing a child to cancer. That's what Vilma Tarzana and Simon Strong thought. Until it happened.
Vilma is a news anchor with Univision in Miami, Simon is president of an information services company, and Oliver was their first-born son. 12-years old. Handsome and healthy. Doing well in school, a leader in his class, and an elite soccer goalie for his team. Happy. Loved his younger brother, and was leading an almost charmed life.
Then one day he got a headache that wouldn't go away. The pediatrician diagnosed it as an infection and prescribed antibiotics. Then, when it didn't clear, the diagnosis became "must be a virus." In desperation, his parents took Oliver to the emergency room at Miami Children's Hospital where tests disclosed a diagnosis that even three pediatric oncologists couldn't agree on: acute myeloid Leukemia (AML), an aggressive blood and bone marrow cancer with a 50% survival rate for children.
Faster than could have been imagined, Oliver's breathing became labored, and his last words before being intubated were "Mommy, Mommy, I'm going to die!" The cancer virtually exploded inside his lungs and his heart stopped. The team of 25 medical professionals in the critical care unit couldn't revive him. Just 36 hours after arriving at the hospital, Oliver was declared dead.
In their efforts to understand how this could have happened, Vilma and Simon are trying to learn why childhood cancers are increasing in prevalence and what causes them. This information is proving difficult to obtain, although they have discovered a cancer "cluster" near their home in Florida. They are also exploring why children who play goalie on artificial turf are being more affected than other children.
The family has created a foundation http://oliverforeverstrong.com/, in an effort to explain the lack of insight into pediatric cancers and to raise money that can fuel more research into causes so other families can avoid such tragedies in the future. They are receiving invaluable publicity for the effort through Univision.
I hope you'll share this link with others who have children. We need to stop these kinds of tragedies.
November 20, 2015
Dogs Represent A Potential New Cancer Detection Tool
CNN announced today that Lucy, a combination Labrador retriever and Irish water spaniel, has been trained to sniff out bladder, kidney, and prostate cancers. Despite having failed at guide dog school, her owners noted that her curiosity and attention to random scents might offer potential for other training applications, like smelling out cancer. Lucy is now part of a clinical trial and has demonstrated 95% accuracy in her "diagnoses.")
Medical Detection Dogs has eight dogs in Britain who can identify from urine samples what National Health Services patients have such cancers as melanoma, breast cancer, and ovarian cancer. Other organizations have proven dogs' ability to sniff out when a diabetic patient is lapsing into hypogycemia (dangerously low blood sugar).
This phenomenon has been noted since 1989 and results from the fact that dogs have s60 times as many sensors in their noses and a second smelling system that humans lack. The combination is capable of picking up on volatile organic compounds that are excreted by many cancers.
The potential of this discovery is enormous, and it should give us all a new appreciation for an animal long known as "man's best friend."
November 5, 2015
Dancing through Stage 4 Cancer, Spreading Hope
October 23, 2015
Animal Studies Reveal Clues about Human Cancers
Recent news about genetic discoveries in animals (none of which damaged the animals but rather involved blood draws and so on) have revealed some exciting prospects for discoveries about the genetic, biological, and immunological mechanisms that contribute to cancer's prevalence in people. I released an article today in Huffington Post on the topic. You can read it there by clicking on the link in the prior sentence, or keep reading below:
Animal Studies Offer Cancer Research Clues
Posted: 10/22/2015 7:43 pm EDT Updated: 10/22/2015 7:59 pm EDT
What do an elephant, a blind mole rat, and bowhead whales have in common that could help people? There are indications that all of them have different sorts of cancer resistance built into their DNA and body processes. The National Cancer Institute (NCI) describes such animal models as central to understanding how cancer works in the human body.
According to the American Cancer Society, roughly one of two men and one of three women will be diagnosed with cancer in their lifetimes. Over three quarters of those diagnoses come in people above the age of 55, but cancer can strike at any age.
Animals get cancer too, but many do so at radically lower rates than people. In the 1970s, epidemiologist Richard Peto of University of Oxford, UK, studied larger and especially long-lived animals, whose cells have divided many more times than those of smaller and younger animals. His opening hypothesis was that these larger and older animals should have more random mutations that could lead to cancer. Surprisingly, he discovered that they actually contracted cancer far less frequently, so he suspected that they might have some built-in biological mechanism that was protecting them from the disease.
More recently, the labs of Dr. J. D. Schiffman (from the Huntsman Cancer Center at the University of Utah) and Dr. Vincent Lynch (evolutionary biologist at the University of Chicago) have each independently identified a significant factor that may help explain the difference in cancer incidence rates between people and elephants. A gene common to people and elephants called TP53 helps suppress cancer. The p53 protein helps identify when a gene has been damaged and may stimulate repair of the gene, pause cell division, or cause the cell to kill itself.
Humans have two copies of this tumor suppressor gene and have a lifetime cancer risk ranging from 33 - 50% (one in two men, one in three women). In contrast, elephants have 20 or more copies of this tumor suppressor gene, and their lifetime cancer risk is dramatically lower: under 5%. It remains to be experimentally proven whether TP53 is responsible for this cross-species difference in cancer risk. Yet in rare human cases where a human TP53 gene is defective (a rare disorder called Li-Fraumeni syndrome), the person's lifetime cancer risk may rise as high as 90%.
Many research labs are examining cancer trends in a variety of animal species that have particularly low cancer incidence for possibly different reasons. Researchers don't fully understand (yet) the mechanisms responsible for reduced cancer incidence in certain species but are now exploring more species for potential human parallels. Particular targets of investigation in animals include two gene types [one that causes normal cells to turn cancerous (oncogenes) and one that suppresses cancer by repairing cell damage and stopping tumor growth] as well as a variety of proteins and enzymes.
For example, the naked mole rat, a subterranean rodent that lives over 30 years (in comparison with the typical four-year life span of more typical rats), is resistant to both cancer and aging. Researchers believe this phenomenon is a function of an enzyme, hyaluronidase (HA). Because cancer is more prevalent in older humans, learnings from long-lived animals with low cancer rates could be relevant. Other long-lived species like parrots, tortoises, and bowhead whales are subjects of Dr. Schiffman's interest, although their cancer suppression mechanisms (as-yet unknown) may be different from either TP53 or the HA enzyme.
Discoveries of how these genes and enzymes behave in animal models may decipher the biological mechanisms that cause, support, prevent, or suppress cancers in the human body. Researchers seek to discover mechanisms in animal models that may help control human cancer's incidence, growth, spread, and potential to kill.
The exploration of such models is only one facet in cancer research but offers an important lesson about why cancer research costs so much and takes so long. Cancer isn't just one disease. It's the name for over 200 related conditions in which unrestrained cell growth may overwhelm the body's normal organs and systems. Controlling cancer requires understanding for each type of cancer such factors as its causes, mechanisms that allow or even foster its spread (metastasis), how some cancers develop chemotherapy resistance, and what causes recurrences after a patient goes into remission.
The American Association for Cancer Research (AACR) describes four basic levels of research that are pivotal to breakthroughs for humans:
- Basic laboratory research studies normal cells and what transforms them into cancer cells.
- Translational research works to convert laboratory discoveries into potentially safe and effective patient treatments.
- Clinical research conducts trials with people to determine safe and effective dosages, on what types of patients, with what types and stages of cancers. Some trials also test whether effective treatments for one type of cancer may work for other types as well.
- Population research examines volumes of clinical data to understand risk, incidence, and survival patterns across large population groups to reveal prevention, detection, or control breakthroughs.
Animal models represent only one link in the cancer research chain. Cancer research is further complicated by the overlay of genetic patterns that make each person more or less susceptible to cancer and by biological "switches" that may trigger the body's own immune system to fight cancer. The resulting breadth of potential research targets makes cancer research both costly and time consuming.
While it's unclear what human applications such research might have, Dr. Ted Gansler of the American Cancer Society says that
"Studies of other species that are done . . . without any short term expectation of medical relevance often turn out to be very important in understanding cancer . . . . progress often comes from unexpected directions."
Despite rising survival rates, current human cancer incidence (one new case diagnosed every 30 seconds) poses an extreme financial and emotional toll for affected families. Animal studies are time consuming and costly but will continue to yield important clues about cancer in humans, clues that will be missed or delayed without substantially increased Federal research funding.
September 21, 2015
Children's Cancer Awareness? Empathy is Far From Enough
Earlier this month, I received a blog post from the Cancer Knowledge Network, a very good information source that's published by people who have lost children to cancer. Sue McKechnie released a post about her son Shawn, who died of brain cancer at age 3. It's compelling reading, and I've picked up on her story in an article that I posted today on Huffington Post. If I say so myself, it's compelling and well worth a look: http://www.huffingtonpost.com/deborah-j-cornwall/childhood-cancer-empathy-_b_8158070.html
Hopefully it will inspire some readers to speak out in support of more funding for pediatric cancer research.
September 10, 2015
Finally, Legislation Addressing the High Price of Prescription Drugs
The Wall Street Journal just released a story about a bill that Bernie Standers and Elijah Cummings are introducing to the Senate and House today the Prescription Drug Affordability Act at a press conference today (September 10). It's goals are to allow citizens to import less costly drugs from Canada, empower Medicare to negotiate drug prices with pharmaceutical manufacturers, and require manufacturers to disclose the prices at which they sell their products overseas.
Pay attention to this bill as more details are disclosed and as our legislators begin to take sides. On the surface, this bill would appear to have positive impact for a large share of the American population. Regardless of your political preferences, it's clear that as the bill proceeds through Congressional consideration in both houses, there will be opportunities for impassioned advocates to communicate their feelings about it to legislators.
August 28, 2015
Cancer Research Accelerators Worth Watching
My latest Huffington Post article offers addresses how pan-cancer studies and collaborative research are changing cancer research. Three particular initiatives are discussed that may give hope to those seeking breakthrough clinical trials. For those of us fighting back to see an end to cancer in our lifetimes, these trends and the accelerating understanding of cancer at the molecular level also build hope and remind us all of the need to speak out to urge Congress to sustain and increase cancer research funding. This year, advocates for cancer research had some success, but in the face of growing budgetary pressures that have shrunk research funding in real dollar terms, it takes prolonged pressure from thousands of advocates every year to protect cancer and other health research budgets.
For inspiration about the kind of progress that is taking place, just click on the link below:
August 20, 2015
Prolonged and "Complicated" Grief Can be Managed
When a loved one dies, grief is inevitable. It comes in unpredictable waves, and at times it feels like you don't have any resilience left. All gone. Used up. Drained. It feels like you have a hole in the center of your body that can never be filled.
For most people, the hole gradually evolves into a well of fond memories. That doesn't mean that the sadness goes away, but it does mean that you begin reaching out to fill the hole . . . to find ways of savoring old memories, or to fill the time that's been left vacant, or to build new relationships that may in some small way help bolster your resilience and let you move on. Despite occasional waves of sadness and tears that may recur periodically, most bereaved people manage to move on and to live a fulfilling life despite the huge loss.
For some, however, the grief can be overwhelming and can last for years. This situation is often called "complicated grief." If you are experiencing such grief, or if a friend is drowning in grief, you might want to refer to an important article on this topic, entitled "A Grief So Deep It Won't Die," which appeared in The New York Times on August 14, 2015.
Complicated grief is severe and prolonged grief that lasts for more than a year or so and gets in the way of normal living for someone who has experienced the death of someone who played an important role in their lives. It's a situation in which the person left behind actually avoids contact with former activities and friends, sometimes won't leave the house or answer the phone, and can't stop thinking about the deceased.
Often the condition is spurred by self-blame: "I should have been able to change the outcome," or "I should have been able to do more." One interviewee for Things I Wish I'd Known: Cancer Caregivers Speak Out was blaming herself for her husband's death to cancer more than seven years after his death; she was a professional who said she wanted to re-enter the workforce, but she couldn't bring herself to even brush off her professional resume, even when presented with job referrals.
Sometimes the condition is spurred by blame directed to the care team. They "should have" or "shouldn't have" or "could have" done something differently. In the mind of the bereaved person, they didn't treat the deceased properly, or caused additional suffering, or allowed an avoidable death. One interviewee was still distraught at the death of her nine-year-old daughter 16 years earlier. She had a family and other children now, but her child's room in the grandmother's house had not been changed in 16 years. That's a long time to be in such profound pain.
Psychiatrists and counselors are careful in the terminology they use, but they are inclined to call complicated grief (and the associated inability to accept and adapt to reality) a disorder. There is now a Center for Complicated Grief (associated with the Columbia University School of Social Work) which can offer help to people who are having trouble integrating their severe grief into their normal lives. If you, a relative, or a friend is experiencing prolonged grief that is impeding the ability to bounce back after a serious loss, you might want to check out these two resources.
August 10, 2015
When There's Cancer in the Household, Don't Forget the Siblings!
When cancer strikes in the household, and particularly if it’s a child who’s been diagnosed, the whole family instantly takes up battle stations. The focus becomes almost exclusively on what needs to happen to mobilize the right clinical team for the right treatment as quickly as possible. The stress on the family unit only intensifies as multiple doctor, hospital, clinic, laboratory, and other visits proliferate and the family’s normal routines disappear in their wake.
Often other siblings in the family put up the stiff upper lip—the “I’m OK” front—as they recognize the need to sublimate their own needs and concerns to those of their brother or sister who is in treatment. Shortly thereafter her mother was also diagnosed with a treatable cancer, and given the dual stress on the family, the parents took her at her work that she was doing fine. Often adolescent children in similar situations may actually think they’re OK, but over time the lack of normalcy and the stresses of the unknown eat away at their sense of calm and control.
You’ll recognize when this happens:
- Michael’s older sister was able to cope for the first seven months of cancer turmoil ordeal . . . until she had a meltdown in school one day. Thereafter her parents arranged with a favorite teacher, the guidance counselor, and her chorus and band directors to keep their eyes on her and watch for unusual emotions or behaviors. They also arranged for her to touch base with the counselor several times a week, so she’d have a predictable pressure release valve and a safety net in case she needed it.
- Jeff’s sister, also in her closing years of high school, took a more direct approach to the issue. One day she approached her mother with the gripping question, “Don’t I matter any more? It’s like I’m invisible.” For her, the issue was getting private time with her mother, Jeff’s primary caregiver. In response, her mom started to plan a night out with her daughter once a week, a time when they could have private conversations or take in a movie—escaping from the 24/7 cancer onslaught.
These strategies were enormously helpful after the fact for both families, but a more effective approach is to plan ahead by recognizing that the entire family is affected by a cancer diagnosis and arranging mechanisms to address healthy children’s emotional needs. For example, some cancer centers and Cancer Support Community divisions are now offering support groups that allow children to interact with similar-aged peers who are experiencing cancer in the family. Such support groups generally offer both conversation and distracting physical or creative activities that give the kids cancer-free time while at the same time legitimizing their emotions and reducing the fear and anxiety that cancer in the household is bound to generate.
When there's cancer in the household, children's concerns are bound to come out. Handling them proactively can be an important part of the "new normal" that they're craving.
July 29, 2015
Connection between Body Clock Disruption and Breast Cancer?
A Dutch study was just released that showed a link between circadian rhythm disturbances (CRD) and early stage breast cancer. This study has implications for the kinds of light-dark disruptions that are experienced by people who work on night shifts over the long term. The authors carefully emphsize that they have identified--in mice only--the correlation between these disruptions and breast cancer prevalence, but identificaition of causes for that correlation will require more study. Current hypotheses suggest that this situation may arise from decreased natural tumor suppression by the immune system, as well as changes in body temperature and hormone levels that accompany chronic CRD for night workers.
Earlier studies (such as the large 10-year Nurses Health Study released in 2001 and a World Health Organization Report released in 2007) have revealed increased risk for this population. The Nurses Health Study hypothesizes that the light-dark inversion reduces melatonin release and deregulates other hormones, potentially increasing breast cancer risk. According to the Memorial Sloan-Kettering Cacner Center, laboratory and animal studies have shown that melatonin applied directly to breast cancer cells can inhibit tumor growth, but the connection has yet to be proven in humans.
Suffice it to say that regular breast cancer screening may be especially important for people who work at night or who rotate between day and night work schedules, such as nurses, flight attendants, hospitality and industrial workers, public safety personnel, and so on.
July 11, 2015
Pancreatic Cancer: Hope on the Horizon?
Pancreatic cancer is one of the most challenging forms of cancer to diagnose and to treat. It shows few if any symptoms before it has spread, and it tends to be chemotherapy-resistant.
In the wake of losing my long-time (34-year) business partner to the disease less than three weeks ago, I've done some research about developments in the therapeutic pipeline that may generate hope for patients in the future. I posted an article in Huffington Post this week that may prove of interest if you're one of the thousands of people who has faced pancreatic cancer as a patient or caregiver and struggled with its dire prognosis.
Sustained funding may help some of these research initiatives pay off in our lifetimes. If you're interested or curious, click on the Huffington Post link in this paragraph, and let's be hopeful together.
June 18, 2015
6 Caregiver Tips for Turning a Slow Death Into a Slow Dance
When cancer is winning, you can often expect death to come slowly, but the uncertainties associated with it challenge both patient and caregivers. Huffington Post released my article on this topic today. It draws on experiences from my caregiver research and may be helpful to those who are dealing with this unsettling issue. Click here to read the article.
May 20, 2015
Fraud in Cancer Fund-Raising? Really?
The New York Times today disclosed that the Federal Trade Commission, in conjunction with the secretaries of state for all 50 states, has filed suit against four cancer charities (The Cancer Fund of America, Children's Cancer Fund of America, Cancer Support Services, and the Breast Cancer Society) for falsifying financial documents and spending the majority of their donations on fund-raising and personal salaries, bonuses, trips, and so on. The article says that only about 3% of the donations were used for their stated purposes. Two of the charities have been closed down, and the other two are being sued for restitution for the nearly $187 million in donations.
The illegalities and abuse of fiduciary trust are bad enough, but the funds that were siphoned off could have legitimately funded important cancer research projects that are starving for resources today.
Readers who are eager to donate to cancer-related causes should take a minute to look at rating lists that will tell you whether a charity bearing a seemingly credible name is actually reputable. The New York Times article said that "The Cancer Fund of America placed second on a list of America’s worst charities published by The Tampa Bay Times and the Center for Investigative Reporting. . . . Charity Navigator, a rating site, gave two of the organizations a low rating, one out of four stars, for the 2013 fiscal year. And three of the four charities had been named to South Carolina’s Scrooge list, which notes charities that spend a lot on fund-raising and comparatively little on charitable programs."
Hopefully in the future potential donors will ensure that their funds are going to an organization that is reputable and fulfills its public trust on behalf of the patients it claims to serve.
May 13, 2015
Remember Watson, IBM's Artificial Intelligence? It's Learning to Diagnose Cancer!
Cancers often travel in disguise, with no visible symptoms or symptoms that look like everyday benign conditions (sniffles, sore throats, swollen glands, persistent coughs, and so on). Many of the individuals I interviewed for Things I Wish I'd Known: Cancer Caregivers Speak Out described their struggles during and after delayed diagnoses.
Now information technology is coming to the fore to help. IBM (the creator of the Watson supercomputer) is partnering with Memorial Sloan Kettering (MSK) Cancer Center to train Watson Oncology, a cognitive computing system that is targeted to "interpret patients' clinical information and identify evidence-based treatment options that leverage . . . decades of experience and research " in clinical oncology. The goal is to accelerate how quickly the latest research and evidence can spread throughout the oncology community and improve patient care nationwide.
By integrating data about large volumes of cancer patients, the results of many clinical trials, and the latest developments in correlations between particular cancer markers in the patient's blood and tumors and responsiveness to particular treatments, a team of subspecialized oncologists is literally training Watson to both identify cancers earlier and to guide physician choices toward the most appropriate treatments for the patient's particular condition.
An April 2014 article in Business Insider online quoted Andrew McAfee, co-author of The Second Machine Age, as saying that "Dr. Watson" will be a gamechanger because:
- "It's based on all available medical knowledge . . . .
- It's accurate. . . .
- It's consistent. . . .
- It has very low marginal cost . . . .
- It can be offered anywhere in the world."
McAfee continued (in an interview with Smart Planet) to cite an April study estimating that as many as 5% of US adults are misdiagnosed by human doctors each year.
This article goes on to cite a Forbes' 2013 article saying that Watson had analyzed, by that time, 605,000 pieces of medical evidence, 2 million pages of text, and 25,000 training cases, with the assistance of 14,700 clinical hours dedicated to refining its decision accuracy. In the ensuing two years, Watson has assimilated even more information on which to base its recommendations.
IBM's own descriptive information is available online, describing how it is being used at MSK, MD Anderson Cancer Center, Wellpoint, and many other leading healthcare institutions nationwide. Over time, Watson will get better and better at leveraging these huge volumes of information to match and even surpass the speed and accuracy of our best human diagnosticians.
So stay tuned: Dr. Watson may be coming to a cancer center near you, and in doing so it is likely to brighten the prospects for all of us who are seeking rapid diagnosis and treatment for suspected cancers.
May 2, 2015
It's Hard When Saying Goodbye and Planning Ahead Aren't In Sync
We will all die. That statement may be the only certainty in life. Yet accepting an early death is unbelievably hard, regardless of whether you're the patient, the caregiver, or a close "significant other" (family friend, neighbor, business partner, old schoolmate, and so on).
When cancer intrudes in someone's life, future visions get dashed. The rude ups and downs of treatment keep us on a roller coaster of expectations and emotions. At some point, for some patients, no matter their age, both proven and experimental curative treatments can no longer hold back the disease; active treatment stops, with only palliative actions taken to relieve pain, nausea, and anxiety. The end of the road is in sight.
For many of us, the question then is: I know I have some time, but I don't know how long, so what now?
At this moment, some patients take the time to say goodbye to those they love. They get their "affairs in order," and they help others who will be affected by their death begin transitioning. For some this means documenting and transitioning both perosnal and business records and processes and discussing past good memories with loved ones. For most, it even means talking about how much they've meant to each other.
Not all patients can make the transition so gracefully. If a dying patient is in denial, or pushing back, caregivers may face their most challenging moments. Sometimes the patient will claim confidentiality and declare annoyance at being pressured to take action. At other times, he or she will assert that there's plenty of time, even when he is too weak to walk down the stairs unaided, or he'll avoid asking for help in tasks that require more energy, persistence, or muscular strength and adrenaline than he could possibly muster.
It's important to interpret these behaviors in context: From the moment of diagnosis, both patients and caregivers lose any sense of control. It's like a rug has been pulled out from under their feet and the earth is shaking daily. Over time, they may be struggling to restore some sense of control over at least a part of their lives, to maintain even a vestige of hope, and to sustain feelings of normalcy that for moments at least may resemble fragments of pre-cancer life.
They may say they'll tell you when they need help, but even as they weaken, they don't ask for it, and so are able to put off the inevitable conversations or transitions. Caregivers, friends, and associates may see the future looking more and more murky and grow more concerned lest the patient die and the transition leave them in limbo in gaining access to needed information, guidance, and resources. The longer the patient deflects action, the more complex the transition begins to look to everyone, especially if faced with the prospect of having to figure things out after the patient's death.
If and when this phenomenon arises, caregivers are powerless to intervene. Their options are limited and are mostly unattractive. If you force the issue, you may be undermining the illusion of control that is keeping the patient going.You'll be eroding their sense of hope and even brutalizing their sense of self if you push too hard and too soon for action that will make your own life easier after he dies. You know what needs to be done, but you can't make it happen. It is what it is, and the sooner you confront the fact that you can't change the process or the outcome, the less stressed you'll be.
If you're a terminal patient reading this, I can only urge you to think of those who will be left behind, and to find ways to streamline transitioning information and transferring knowledge sooner rather than later. If you have many months left ahead of you, bravo for creating something you and your significant other can laugh about. If you don't, taking the needed actions is an expression of caring for those around you and will keep them from having to sort things out in the dark of their grief after you're gone.
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