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.
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.
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:
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.
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.
“Personalized” and “precision” medicine are simple terms used to describe the very complex process of figuring out just which of many available chemotherapy treatments will give the best response to a particular tumor in a particular patient. One of the exciting research developments has been the ability to determine, based on the presence of certain biomarkers in a patient’s blood sample, what chemotherapy treatment(s) might be most appropriate.
Now researchers at Massachusetts Institute of Technology's Koch Institute for Integrative Cancer Research are developing an implantable device that’s as small as a grain of rice and has the potential for determining this with greater certainty. This device can carry 30 (and eventually up to 100) micro-doses of single chemotherapies or combined drugs that can subject the tumor to varied types and dosages of treatment. The response of the tumor to each drug can be measured independently before the patient’s entire body is subjected to the rigors of systemic treatment. In other words, the implant can help determine which drug or drugs are most likely to cause the desired response from the tumor, and patients wouldn't be subjected to the suffering that trial and error inflicts on their bodies.
According to Dr. Jose Baselga, chief medical officer at Memorial Sloan Kettering Cancer Center in New York, the device would be removed 24-48 hours after implantation, and within a week the treatment plan would be devised, based on the results. Tests are underway in mice for prostate, breast, and melanoma tumors, with human trials likely later this year.
This development was written up in the journal Science Translational Medicine (April 2015) and was summarized in the Boston Herald on April 23, 2015. Science fiction is coming to life with the possibility of nearly real-time matching of tumors with treatments. Stay tuned!
When I first encountered the circulating tumor cell (CTC) research at Massachusetts General Hospital’s (MGH's) Cancer Center in 2007, I was left nearly speechless. The possibilities I encountered there left my non-scientific head spinning with hopeful prospects.
The premise underlying the MGH CTC work was that primary cancer tumors “shed” cells into the blood stream and that if they can be captured and their density in a blood sample can be measured, diagnosis and treatment of many cancers could be accelerated. CTCs have been known for well over 100 years, according to the MGH website, but only recently has technology allowed them to be differentiated from normal blood cells. These circulating tumor cells are so tiny that they couldn't be detected until a new technology of microscopic matter emerged, called nanotechnology.
The Mass General CTC team, under the direction of Drs. Daniel Haber and Mehmet Toner, assembled bioengineers, molecular biologists, and clinicians to use microscopic fluid dynamics to construct a “chip” and accompanying assay devices that would be over 100 times more sensitive to the presence of cancer cells than existing technologies.
Flowing a small blood sample through specially coated channels in the chip would allow capture of any CTCs (to indicate whether cancer is present) and measuring their density in the blood sample. Think of this like flowing the blood through a tunnel that is lined with coated columns, each of which attracts the CTCs that flow nearby. After the blood has flowed all the way through the chip's channels, the CTCs can be removed from the columns, measured in density, and assessed for their genetic composition.
Findings from such tests could serve as a liquid biopsy, avoiding the need for surgical biopsies for tumors deep in the body. Such biopsies could reveal early stage cancer, characterize the DNA composition of those cells (what kind of cancer, with what kinds of genetic characteristics), and determine the treatment to which the individual patient’s cancer cells were most likely to respond. In addition, the technology offers the opportunity to determine later whether prescribed chemotherapy and other treatments are working in real time (reducing the density of those cancer cells many weeks before tumor shrinkage would show up on a CT or other scan and eliminating the need for repeated biopsies). It would also allow metastases to be identified and treated in their earliest stages.
In 2009, after competition among 237 submissions for funding from Stand Up to Cancer (SU2C), this team won $15 million to advance its technology on the condition that MGH collaborate with other institutions to accelerate bringing it to market. The chip was refined in conjunction with Massachusetts Institute of Technology (MIT) bioengineers to increase its sensitivity.
Pilot testing of the CTC system is now underway with patients at Mass General, Memorial Sloan-Kettering Cancer center in New York, Dana-Farber Cancer Institute (Boston), and M.D. Anderson Cancer Center (Houston) to determine its applicability for different types of cancers. In clinical studies conducted over the past two years, the CTC-chip has been used to identify circulating cancer cells in the blood of patients with metastatic cancers of the prostate, lung, pancreas, colon and breast.
Now another angle on this idea has reached the public stage. On April 19, 2015, Gina Kolata of The New York Times described another blood test with the potential to serve as a liquid biopsy. This one is earlier in the research and development pipeline and was devised by two Australian scientists in collaboration with Johns Hopkins researchers. This test extracts “shards” of DNA in a patient's blood after tomor removal surgery, with initial applicability to Stage 2 colon cancer. Their goal is to identify which patients have remaining cancer DNA in their bloodstreams after and should be treated with chemotherapy to prevent metastasis.
Both of these research studies are capitalizing on emerging technologies both in molecular biology—understanding the genetic composition of a patient’s cancer cells and the indicators of change in disease progression—and in applying nanotechnology to understand and change the course of the disease. Bringing their potential developments to fruition will require time and sustained funding, but their potential to save lives and improve the quality of life for cancer patients and their families is encouraging.
When you or a loved one are facing cancer, you can never get enough inspiration. Today's dose of inspiration comes courtesy of James and his wife, who together faced down a terminal multiple myeloma diagnosis in 1992, when he was only 44 years old. They persevered through some very difficult times, have outlived his original prognosis by almost 7-fold, and have so far beaten James' cancer into remission. His good health today is thanks to the right treatment (Dana Farber Cancer Institute), aggressively seeking out three bone marrow transplants and two clinical trials, and a combination of perseverence and good luck. James is so strong today that he's in training for his ninth Pan-Ohio 328 mile bicycle ride to benefit the American Cancer Society. His story is inspiring and worth reading if you need a combination of information and inspiration about multiple myeloma or the value of clinical trials. Kathleen, his caregiver, is a role model for caregivers in her blend of persistent monitoring of his condition, aggressive research, and sheer determination to seek out every possible new development that could be helpful. Thanks to both of them for sharing their story to inspire others.
Recent cancer research developments have been mind-boggling, and this one is no exception. Clinical trials are underway for a substance derived from scorpion venom that can be injected into a patient's bloodstream and will attach itself to brain cancer cells to make them glow.
Many cancer cells are shaped almost like spiders, with strands that extend into and around adjacent tissues. This is a particular problem in the brain because surgeons simply can't see all of the strands to remove them all without damaging normal tissues.
Dr. James Olson, a pediatric neuro-oncologist at Fred Hutchinson Cancer Center in Seattle, has been working for 15 years on a substance called chlorotoxin that comes from a type of scorpion. When he couldn't get traditional research funding sources to support his idea, he used crowd funding to accelerate progress. Now the idea is in clinical trial for its ability to cause brain cancer cells to glow, making them easier to excise. Olson has founded a company, Blaze Bioscience, which is now making the substance in the laboratory.
Olson is now exploring a new class of substances called "optides" that may have therapeutic benefits for a variety of cancers. His team is also seeking to understand why some tumors become resistant to therapies after first responding to treatment.
Meanwhile other major cancer centers are exploring therapeutic applications of chlorotoxin. For example, at New York-Presbyterian Hospital (the teaching hospital for Columbia and Cornell medical schools), Dr. Stephen Rosenfeld and his team are exploring the effects of radioactive and non-radioactive chlorotoxin on malignant gliomas, which are especially aggressive and have a poor prognosis. Their clinical trials are studying whether such substances can help cut off the blood supply to the cancer cells, at least inhibiting their spread and potentially killing them without harm to normal cells.
Other research laboratories and biotech companies around the world are exporing whether other animal and plant toxins may also yield therapeutic benefits. Such potential treatments are controversial and as-yet unproven, but they illustrate the breadth of research initiatives targeted toward understanding the complexities of cancer diagnosis and treatment. In that regard, they offer hope that new ways of approaching cancer research may find new techniques for improving outcomes while reducing the suffering traditionally associated with cancer treatments.
This article was published online by Huffington Post on April 7, 2015:
To hear the words "cancer" and "cure" in the same sentence from experienced cancer researchers is both breathtaking and unexpected. Researchers and top oncologists are usually cautious to a fault.
To hear that Congress is again trying to squeeze cancer research budgets is breathtaking but predictable. They've become frugal, also to a fault.
Such is the cruel irony facing cancer patients and researchers today.
Building on over 50 years of scientific progress, research leaders from cancer centers across the country are achieving stunning results that have led even the most guarded of them to use such formerly forbidden words as "breakthrough," "miracle," and "cure" in describing patient reactions and the potential outcomes of their virology and immunology cancer work. Much of this work has been supported by federal grants (National Institutes of Health, National Cancer Institute). Along the way, the continuance of many promising ventures has been jeopardized by Congressional refusal to sustain funding, even for breakthrough projects whose outcomes are already exceeding clinical expectations.
Virology and immunology research sounds mysterious but can be described in simple terms. Most cancers have mechanisms that make them invisible to the body's immune system. In other words, the immune system can't recognize them as dangerous and so doesn't attack them.
Researchers are now genetically modifying viruses that -- if left unchanged -- would have had the power to paralyze or kill their hosts. The genetic modifications turn formerly harmful and even lethal viruses (such as measles, polio, rabies, and HIV) into therapeutic agents. Rather than harming normal cells and spreading disease throughout the body, modified virus particles or virus-infected cells (in the case of HIV) are injected into solid tumors or delivered intravenously into the blood stream.
William C. Phelps, PhD, Director of Preclinical and Translational Cancer Research at the American Cancer Society, describes recent research developments as "one of those scientific situations where two fields (virology and immunology) collide to provide a breakthrough. Fifty years of studying viruses in excruciating detail has allowed us to understand how to engineer viruses in clever and useful ways to accomplish what immunotherapy needs to create cancer-fighting weapons."
Some of these therapies inject direct cancer-killing "oncolytic viruses" directly into tumors while others stimulate the immune system to recognize and attack the cancer cells. Dramatic clinical trials of such new combination therapies are underway at leading cancer centers nationwide with patients who have exhausted traditional therapies for recurrences of potentially lethal cancers. A sampling of these include:
Similar work is also underway at other cancer centers across the country but may have received less visible press coverage. Many of the resulting therapies could--if current outcome trends continue--be eligible for "fast track" or "breakthrough" designation by the Food and Drug Administration (FDA). Both of these FDA programs offer a framework for accelerating broad market approvals.
"So what?," you might ask. "Doesn't this show that we're winning this war?"
On the contrary, much of this breakthrough work is still in the research pipeline and not widely available. Statistics from the American Cancer Society show that the need for such treatments is still greatly outstripping theor availability.
In this country, over 1.7 million people are diagnosed with cancer and almost 600,000 will die each year. There are currently almost 15 million survivors, many of whom worry about whether their cancers will return. Millions more, both patients and family caregivers, are in the midst of prolonged treatments and unpredictable disruptions of their work and family lives. The costs to the economy in health care expenses and lost work time are massive.
You don't have to use the word "cure" to appreciate the possibilities. Evidence exists that the dramatic life-saving impact of the newest cancer care treatments can generate massive cost savings if the nation would commit to making "cancer-free" a more common outcome of cancer therapies that are available to an ever-increasing number of patients.
As a nation, we've proven our willingness to defend our homeland against external threats through military defense spending. Perhaps comparable medical defense spending could advance our internal war against cancer. By "piling on" and intensifying research funding now, through increased Congressional support of NIH cancer research budgets, we could finally break the cruel irony of under-funding potential cancer breakthroughs.
Jane Brody's March 23 New York Times article, "The Road to Cancer Treatment Through Clinical Trials," highlights the fact that a higher proportion of pediatric cancer patients than adults have the opportunity to participate in clinical trials. For adults, the proportion is only around 5%. The article highlights the potential dramatic impact of the right trial and details resources for finding appropriate clinical trials (most of which are listed on the Resources tab of this website). Brody also details several cases where new treatments have changed the course of the disease for trial participants.
Unfortunately the availability of trials is often a function of a medical center's size and location in a major metropolitan area, where larger numbers of trials are conducted. Nevertheless, it's important to know where appropriate trials might be available in case a patient from a rural area is able to travel to such a location for treatment. American Cancer Society Hope Lodges (31 nationwide) may be available to help with free lodging in these circumstances.
Brody's article also previews Ken Burns' eagerly awaiting six-hour series, "Cancer: The Emperor of All Maladies," which will be broadcast on PBS in two-hour chunks on March 30, 31, and April 1. Featured as a commentator throughout will be Dr. Siddhartha Mukherjee, author of the Pulitzer Prize winning book, The Emperor of All Maladies: A Biography of Cancer. Given the quality of Burns' and Mukherjee's past work, the series should be well worth watching for anyone facing the uncertainty or stress of a cancer diagnosis and anyone who is advocating on behalf of a cancer patient. Thanks to Jane Brody for calling attention to the issue of clinical trials and to this important piece of broadcast journalism.
Experts say that 95% of cancer pain is controllable, but you need to be dealing with pain management or palliative car experts as part of your care team. If you're looking for pain management resources, check the tab above labelled Resources and scroll down. Three good resources are now listed there to find information that will greatly improve the quality of life for those suffering pain during treatment.
The drive to protect our children ― to help prevent falls, ease cuts and scrapes, and deflect nasty experiences ― is at the core of parenthood. It’s baked in to the classic parental desire to “kiss it and make it better.” Yet if carried too far, to the point where we don’t level with children after a family member or the child himself is diagnosed with cancer, this drive can actually inflict lasting pain.
Today the Cancer Knowledge Network published my article on this topic, based on Things I Wish I'd Known: Cancer and Kids, my new book focused specifically on how to communicate about cancer with children affected by a personal or family cancer diagnosis and key lessons about how to manage a child's cancer. For more information, click on the CKN link or go to the "Cancer and Kids" tab of this website.
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.
Cancer patients for whom standard treatments haven't worked often feel desperate to find a clinical trial that can extend their window of hope. Yet many either can't qualify for or can't get into an appropriate trial. Often this happens because the controlled-experiment nature of the trials poses such stringent requirements and precludes the sickest patients from participating.
The good news is that precision medicine (see my blog posts of December 31, 2014, and February 3, 2015, below) is now staging a new and unconventional type of clinical trial that may convince the Food and Drug Administration to accelerate approval of new, genetically targeted cancer treatments.
The concept, described in Gina Colata's February 25 The New York Times article, "A Faster Way to Try Many Drugs on Many Cancers," is based on genomic analysis of an individual patient's tumor for known mutations that may contribute to the growth of cancers that strike may different body parts. In the past, potential therapies were tested and then approved to address cancers of particular organs or body systems. The new "basket trial" approach uses drugs already approved for specific genetic mutations in cancer of a given organ or system to treat patients whose cancers (regardless of where they appear in the body) are characterized by the same genetic mutations. In other words, the treatment is governed by the genetic mutation that is causing the cancer, rather than by the particular kind of cancer or body part where it appears. This is why these trials are called "basket studies" (because they lump together different kinds of cancer).
This kind of trial isn't saving every patient who is enrolled, but when results for a number of patients with different kinds of cancer are dramatic enough, a new therapy may be approved far faster than in traditional clinical trials. Each trial will be smaller than traditional clinical trials and will be conducted without a traditional control group (a group of patients who don't receive the new medication that's being tested). As a result, the FDA's office that approves new cancer drugs will be looking not at the relative efficacy of the new treatment in comparison with standard treatments, as in the past, but rather at whether the population of cancer patients will benefit significantly from access to the drug.
The National Cancer Institute is coordinating such basket studies nationwide to amass data quickly enough to identify and accelerate apprpoval for those drugs that appear to change the treatment "game" for cancer patients. The potential impact of such trials is breathtaking.
On February 19, The New York Times ran an OpEd entitled "My Own Life: Oliver Sacks on Learning He Has Terminal Cancer." It's worth reading on its own, as a commentary on how life looks when it's lived under the shadow of knowing that cancer is winning.
In addition, one of the people who commented on his article, Elizabeth Fuller from Peterborough, New Hampshire, offers remarks that are at least as compelling as Dr. Sacks piece. She wrote, in response to Dr. Sacks editorial, that she attended a friend's funeral in recent months where she heard a moving quote about immortality, "that we do live forever, and not just as memories. What we have done, said, and written lives on in ways big and small, often subconsciously, in those whose lives we have touched."
Both Dr. Sacks OpEd and Ms. Fuller's commentary offer words of solace to anyone who has lost a loved one to cancer, to think about how that person touched others in a lasting way. Second, they offer a reminder to all of us who care about cancer and are committed to ending its rampage that every time we reach out to touch someone else through our caregiving, advocacy, or active support of cancer research, we're doing lasting good that matters long after we're gone.
If we could all touch others' lives as she suggests, wouldn't the world be a better place?
The time has come to recognize that just because two people may carry the same diagnosis for a seemingly similar medical condition, the most appropriate treatment may well differ for each, based on individual patients' unique genetic make-up. The President announced this week that his proposed budget will not only seek to restore some of the cuts in health research funding that sequestration inflicted in the budgets of the National Institutes of Health and the National Cancer Institute, but will alaso propose a new "precision medicine" initiative.
This terminology may be new to the layman reader. Two resources that may help explain the term "precision medicine" are:
While the total budget for the new initiative is small ($215 million) in relation to the opportunity, it's a beginning. Hopefully public pressure will move this initiative forward and make it more robust over time, regardless of what happens to other budget line items. One or both of these articles is worth a read if the topic is new to you.
While cancer and diabetes are cited in the articles as potential targets for precision medicine, this combination of technologies (genomics, immunomics, proteomics, and "big data") has potential to help the thousands of people who are afflicted by less known conditions like dysautonomia that are both hard to diagnose and harder to treat. The future is before us. The only question is whether we, as a nation, will have the will to realize its potential.
The National Cancer Institute (NCI) of the National Institutes of Health has reorganized its National Clinical Trials Network (NCTN) to consolidate nine cooperative networks of medical and research centers that conduct multi-site cancer clinical trials into four groups. According to Cancer Today Magazine's Winter 2014 issue [published by the American Association for Cancer Research (AACR) in December 2014], this action will centralize the ethical and scientific review of trial protocols for multi-site trials and impose stricter timelines for their execution. The intent is to accelerate participant enrollment, shorten trial timeframes, and improve patients' access.
In addition, the community-based health program, the network of community hospitals which enrolls around 40% of trial participants, is being wrapped into a new NCI Community Oncology Research Program (NCORP) with 46 sites nationwide. Twelve of these sites have been designated to draw least 30% of their trial participants from racial or ethnic minorities or from rural areas. NCORP will also study which treatments offer the best return for their investment, generating important resource allocation insights for use by the government, organizations, health systems, and practitioners.
Total cancer research and clinical trials funding is still meager, but these initiatives offer the potential for existing spending to have greater efficiency faster than in the past and to broaden patients' access to appropriate trials.
My new book, Things I Wish I'd Known: Cancer and Kids, is now available on Amazon.com and BarnesandNoble.com in e-book form. The print book is now from both and will be available from this website www.thingsiwishidknown.com by January 28.
This short book was written for cancer caregivers who are responsible for helping children understand what a cancer diagnosis means for a loved one or for themselves. The cancer experience shakes most caregivers to their core. It is even more compelling and poignant when it involves children.
Thousands of families each year face this shocking reality. Based on interviews with caregivers who have first-hand knowledge, this book is intended to help anyone facing a cancer diagnosis affecting a child, either as the patient or as a member of a family. It offers advice and cites resources to help discuss cancer with children of different ages, manage the impact of the disease on their daily lives, navigate treatment for kids with cancer, and deal with children's grief in the event of a death in the family.
In short and direct language, tthis book offers guidance and resources (both references and internet links) for communicating and taking action in five areas:
If you're pressed for time and need to know what to do on these topics, you can't go wrong with this book. The references provided are comprehensive and will save you time and energy as you navigate through a challenging situation. The e-book contains live links to most of those resources; the print book offers those links in footnote form. Early reader comments are offered as testimonials on the website thingsiwishidknown.com.
Charlotte is 40 years old. Three years ago, diagnosed with ovarian cancer, this single mother of two survived the agonies of traditional chemo, which brutalized her body. She thought she had beaten the cancer, until it came back four months ago.
New newly remarried, it was hard to for Charlotte to feel hopeful, even though she was being treated at a world-renowned cancer center. Looking forward, she anticipated yet another round of nausea and pain without knowing whether long-term survival was in the cards.
Medical science has put a bright light on Charlotte's horizon because of huge strides made since her earlier treatment experience. Charlotte's medical team took a sample of her cancer, grew it in a lab, and learned, through genetic testing, that a specific genetic mutation had made her cancer more likely. With that finding in hand, her team learned that she was eligible for a Phase I clinical trial that was just starting. She is among the first 40 human patients (following animal testing) to take an experimental drug, together with two other drugs (one of which is in Phase III trials).
She participated in that trial for eight weeks, taking three pills each morning and one each night. Weekly she had blood draws that were subjected to rigorous testing to modulate medication dosage and track progress.
Interim results now look good: All of the key blood markers have been trending positively week after week. Her January 2 CT scan (as of this January 6 update) revealed that her tennis-ball-sized tumor had shrunk 6%, an amount that may seem small, except that it had continued to grow while she was taking standard chemo; right now, any measurable shrinkage is enough to induce celebrations in her household. Even more important has been her positive quality of life during treatment: Charlotte feels great and looks great, and now she has factual reasons to be hopeful. Her medical team has now reducced the frequency of her visits and monitoring to monthly, instead of weekly.
"I'm just 40, and I'm not ready to give up. I'm not only going to beat this," she told me, "but I'm also helping make history. " She's got ovarian cancer, and she's grinning for all she's worth.
Charlotte is living proof of my latest Huffington Post article on precision therapies as the future of cancer treatments. She is both meeting and making history, and in the process she's demonstrating remarkable courage and giving us all more hope.
Smoking is a proven way to kill yourself. On average, smokers die 11 years earlier than non-smokers.
So if someone you love is still smoking and you want that person to be in your life for the rest of your own life, try asking them the following question:
Would you knowingly ingest rat poison (arsenic), embalming fluid (formaldehyde), lighter fluid (butane), tar (blacktop paving material), or insecticide (nicotine)? These are only some of the poisons built into cigarettes. Smoking is responsible for one of every three cancer cases and one in five US deaths each year. For every smoking death, 30 more people are suffering from cancer, chronic bronchitis, emphysema, and other life-threatening diseases.
By continuing to smoke, your loved one is exposing you to these risks. Help your loved one help you. Spread the word!
Most of us are used to getting up in the morning and facing the day without health limitations . . . until a serious illness hits us or someone we care about. Many of us haven’t given a moment’s thought to the what-ifs — especially the what-ifs associated with a potentially life-threatening condition.
My 20+ years of volunteering with the American Cancer Society, and my experience interviewing nearly 100 cancer caregivers and writing a book about their learnings, have been a wake-up call for me. I have talked formally or informally with hundreds of people who have faced potentially life-threatening illnesses for themselves or their loved ones. Some of those people are thriving today, and others have died.
Regardless of their personal outcomes, all of them faced the need to think ahead about their health and to talk with loved ones about the most sensitive issues: What if I don’t get better? How can I avoid debilitating pain? How can I make things easier for myself and my loved ones? How can I ensure that my medical team carries out my wishes? Are there circumstances (like letting my children travel to my side) under which I would like them to override my wishes?
In general, these people said they wish they’d had those sensitive conversations earlier, rather than later, and they wished they’d had tools to help make those conversations easier and more complete.
These kinds of conversations are a little like the conversations saying "good-bye" to a loved one who is suffering from advanced cancer. As Deborah O's husband said, "consider saying good-bye before your loved one becomes too ill to do so, even if it turns out to be like the Rolling Stones Farewell Tour which, I think, has been underway since the early 1990s."
When you read about the costs of new cancer chemotherapy drugs, it can truly take your breath (if not your house) away. Recently Reuters and Bloomberg News reported that Amgen's newly approved drug, Blincyto (blinatumomab), for Philadelphia chromosome-negative precursor B-cell acute lymphoblastic leukemia (B-cell ALL) will cost an average of $178,000 for the average patient. Numbers at this level — one of the most costly of cancer treatments — are horrifying to anyone who is facing this form of ALL.
If this is a drug that will make a difference for you or your loved one, don't despair (yet): Check out Amgen's patient assistance website (http://www.amgenassist.com/support_programs/assistance_programs.jsp). This particular drug may not yet be showing as the date of this posting, but you can call their oncology assistance hotline at 1-888-427-7478 from 9 am to 8 pm eastern time. They can put you in touch with foundations that may be able to provide help in funding your treatments.
You may also be able to get help from three other organizations:
Your oncologist or cancer center's patient navigator or social work department may also be able to provide help finding support.
For those of us who work toward a cancer-free world, a world in which cancer is something you live with and not something you die from, "precision medicine" offers long-term hope. My Huffington Post article ("4 Rays of Hope for 'Precision' Cancer Therapies"), posted on December 16, provides an overview of emerging directions in cancer research.
Very simply, research is seeking treatments that target only the cancer cells and don't damage healthy ones. Such treatments, known as "precision medicine," offer hope to improve both survival and quality of life for cancer patients. The combination of developments in genomics (study of how each person's genetic make-up creates predilections toward or resistance to certain diseases), proteomics (study of the proteins and enzymes that our genes excrete), immunomics (study of ways that the immune system might be stimulated to fight certain cancers), and big data ("informatics") are potential game changers.
This article tries to present a layman's overview of some highly sophisticated scientific work that generates longer term hope for all of us. It will take lots of time, sustained cancer research funding, and extensive investment in data collection, storage, and analysis systems to realize the promise. That won't be quick or easy, but it's exciting to know that there's significant hope on the distant horizon.
Thanks to Dr. William Phelps, Ph.D. and Director of the American Cancer Society's Preclinical and Translational Cancer Research Program, for his contributions to the article, for making truly complex concepts accessible to all of us, and for investing his personal energies in a cause that will benefit us all.
I've been engaged in cancer advocacy for years. Advocacy is the process of trying to educate and influence legislators to shape public policy in a direction that can help a particular cause. (Legislators weren't born "smart" about every topic they encounter—they often need educating to understand why something we want them to do is so important)
For me, the cause is help to cancer patients, particularly the help that could come from increasing Federal cancer research funding. Yet our Congress is being penny-wise and pound foolish:
The American Cancer Socierty's Cancer Action Network (www.ACSCAN.org) and advocates from major cancer organizations and cancer centers are all pressing for increasing research funding. Other health organizations are pressing for increases in funding for their disease areas.
Sustaining and increasing research budgets for major life-threatening diseases just makes good sense. To some of us, it's as natural as motherhood and apple pie to put money where it can save lives in the long term.
Yet recently I had a wake-up call on this topic. I was volunteering at the Making Strides Against Breast Cancer event in Boston where we were circulating petitions to Congress to increase Federal cancer research funding. You can identify most breast cancer survivors who are in attendance because they register and wear a banner that says "Survivor." Curiously, several of those survivors refused to sign the petition. Each has experienced the terror and challenges of breast cancer on herself and her family. (On that day, all were women.) Many have lost other relatives and friends to the disease. All who were there were raising money for the American Cancer Society, some of which goes to research. And yet some survivors wouldn't add their voices to the chorus by simply adding their name and zip code to a petition to ask Congress for appropriate action.
Have we gotten to the point in our country where rampant politics or obsession with confidentiality are stopping us from speaking out for what's right? Or are we just not willing to speak out, lest it sound politicly incorrect or require us to go out of our way and do something out of the ordinary?
It's a certainty that we won't finish the fight against cancer in our lifetimes if we don't start funding research on a predictable enough basis to inspire young researchers to go into and stay in the field and to sustain the long-term projects needed to discover breakthroughs. It's also a certainty that there's power in numbers.
Those of us who have had cancer must speak up and tell our legislators that we expect them to sustain this important priority. That's not hard work. It's just good common sense.
Sammy is a professional advocate. She is a professional in the field of helping prevent and deal with the consequences of sexual assault. She works with people who have faced significant threats to their psychological and physical welfare, and she helps them to overcome both traumas. So it's no surprise that when her 45-year-old husband was diagnosed with bladder cancer, Sammy sprung into full action mode.
Initially he was treated at a community hospital where things just didn't seem to be going well. After his initial surgery, he not only didn't get the kind of patient focus that every cancer patient needs psychologically, but they left after his initial recovery without any information about what to expect or do moving forward. Convinced that he wasn't getting the best treatment, Sammy moved into the void.
She used what little information they had been given to seek out, on line, hospitals offering state-of-the-art treatment, and she found a cancer center in one of Boston's best hospitals only two hours from home that specialized in bladder-saving surgery. From the moment they consulted with the multi-disciplinary team that offered this specialized treatment, Sammy and her husband felt a sense of relief. The four physicians with whom they met, each representing a different specialty, were working together to plan her husband's course of treatment, a series of steps that would attend not only to his long-term survival but would also preserve his quality of life in the interim. The staff have been attentive; each doctor and nurse has followed up with him after every visit to ensure that each of them has done everything possible to answer their questions and to advance his well-being.
Now, three months after their first Boston consult, as I talked with them at Boston's Astra-Zeneca Hope Lodge Center, both are beaming. They've learned that he is already cancer-free, as a result of both surgery and initial rounds of radiation and chemotherapy. Even though the most aggressive chemo lies ahead, chemo that should sustain his cancer-free state, they are both wearing non-stop and contagious smiles. Not only has his life been saved, but his quality of life has been preserved so he can enjoy raising their young son.
There's a moral to this story: Sammy took charge. She did her research. She questioned what was being offered locally. She applied her professional skills to the problem her husband needed her to solve, and they both already see the benefits of having done so. Cancer caregiving isn't easy. In fact, as Sammy says, the stresses for the caregiver are sometimes challenging and unexpected. But for Sammy, her strong coping skills have generated early positive outcomes that will sustain them through his remaining treatment and beyond.
Take a lesson from Sammy. You have nothing to lose in taking charge of your loved one's care.