If you’re a cancer patient looking for assistance with paying for targeted therapies, transportation to appointments, lodging near cancer centers, or other issues, check out Nancy’s List of financial assistance resources!
Barbara Ehrenreich’s new book has a title that makes a much-needed point: Natural Causes: An Epidemic of Wellness, the Certainty of Dying, and Killing Ourselves to Live Longer.
As a metastatic cancer patient, this resonates with me. The fact is, people die. Nothing can change that–not doctors, not preventative check-ups, not healthy living. NOTHING. Our bodies have built-in components that can cause disease (cancer being one) and tissue breakdown. All living things will eventually wear out and reach a natural end, like the potato in image above.
The Western World is so obsessed with not dying that we sometimes forget to live. Knowing how best to keep our bodies healthy is important, but at some advanced age we should stop worrying about lifestyle elements that aren’t perfectly healthful, stop intrusive testing for things that **might** kill us, and just focus on living as well as we can given our circumstances.
Ms Ehrenreich excerpted parts of the book in her article in The Guardian 31-Mar-2018. In it, she addresses society’s compulsive need to blame someone for dying. Did they eat the wrong things? Drink too much? Exercise too little? Smoke? Stress over work? Essentially, it’s the same issue we wrangle with lung cancer stigma, but applied to all health conditions. Why does dying have to be someone’s fault? Reality is, we’re all going to die of something.
Another article in the Guardian interviewed Ms Ehrenreich about her perspective. It starts with, “Four years ago, Barbara Ehrenreich, 76, reached the realisation that she was old enough to die. Not that the author, journalist and political activist was sick; she just didn’t want to spoil the time she had left undergoing myriad preventive medical tests or restricting her diet in pursuit of a longer life. While she would seek help for an urgent health issue, she wouldn’t look for problems.”
Those sentiments reflect my own thinking nowadays. I recently had several preventative health appointments: annual physical, Hep C screening, 3D mammogram, gynecological exam, and colonoscopy. Some of the procedures seem reasonable: for instance, a new vaccine can prevent more types of pneumonia (I know from experience that pneumonia reduces my quality of life), and having a polyp snipped is an effective and painless way to prevent colon cancer. However, I wonder if I should be spending money (mine as well as the insurance company’s) to undergo screening for cancers other than the one I’ve already got, given that I’m not sure I would undergo aggressive treatment for whatever they might find. Chances are, my metastatic lung cancer will eventually recur, and sooner rather than later. If the colonoscopy had detected advanced colon cancer, and my only option to treat it was radical surgery to remove a section of my colon, I’m not sure I’d do it given my lung cancer is not cured. If I have limited life remaining, why would I spend it recovering from a significant surgery that can’t cure me?
Each person will have their own answer to the question, “Am I old enough to die?” because each has their own set of priorities. I know some terminal cancer patients who would subject themselves to any level of discomfort in order to have more time with their small children. Others would find life is not worth living if they were unable to walk in the woods every day. Whether or not to undergo a cancer treatment should an individual’s decision based on personal priorities, overall health, effectiveness and quality of life impact of available treatments, and cost. But at some point, regardless of our priorities or treatment decisions, death wins. Many of us waste a lot of time, energy, and resources denying that fact.
For my two cents, Barbara Ehrenreich gets it right. I hope people listen to her and consider changing their perspective on life and death. It could make a big difference in their quality of life, and perhaps in the overall burden of healthcare costs as well.
I’m going to eat some chocolate now.
Why are the poor blamed and shamed for their deaths? (Barbara Ehrenreich, The Guardian, 31-Mar-2018)
When do you know you’re old enough to die? Barbara Ehrenreich has some answers (Lucy Rock, The Guardian, 7-Apr-2018)
Natural Causes: An Epidemic of Wellness, the Certainty of Dying, and Killing Ourselves to Live Longer by Barbara Ehrenreich, available 10-Apr-2018 on Amazon.
Today the Centers for Medicare and Medicaid announced they will cover Next Generation Sequencing (NGS) for cancer! This is a major victory for all cancer patients.
As cancer patients and caregivers transform into active cancer advocates, they may think about attending medical conferences. On March 8, at 8 pm Eastern Time (5 pm PST), #LCSM Chat will discuss various aspects of cancer advocate participation in medical conferences.
Some reasons for cancer advocates to attend medical conferences are to:
- Learn more about cancer and treatment options for cancer
- Get details about new research
- Meet the top doctors who treat their type of cancer
- Support an advocacy organization’s outreach booth
- Network with other advocates, as well as clinicians and researchers
- Share an advocate’s perspective on a specific topic, sometimes as an invited speaker
As more advocates participate in conferences, the conference organizers, professional societies, and medical practitioners are coming to understand the benefits of including advocate voices in their programs. #LCSM Chat member Janet Freeman-Daily was recently interviewed by the International Association for the Study of Lung Cancer about her participation in conferences–read the resulting article here: Why Should Advocates Attend Academic Lung Cancer Conferences?
Tools exist to help advocates navigate cancer conferences and understand the content they will see:
- How to Navigate a Scientific Meeting by American Association for Cancer Research (AACR)
- Advocate Resources by Research Advocacy Network (RAN)
- Being a Cancer Advocate by American Society for Clinical Oncology (ASCO)
If you know of other resources, please share them in the comments on this page or in the chat.
Some professional societies and cancer nonprofits sponsor programs that enable cancer advocates to attend conferences and learn more about medical research:
- AACR’s Scientist↔Survivor Program
Participants receive travel grants and participate in special educational programs at cancer research meetings.
- ASCO’s Conquer Cancer Foundation Patient Advocate Scholarship Program
Provides need-based grants to cover travel and registration for a variety of ASCO meetings, including the huge Annual Meeting in Chicago each June. Applications for the Annual Meeting are usually accepted during a window in early March.
- RAN’s Focus on Research Scholar Program
Scholars participate in preparatory conference calls, virtual classroom (webinars), learning materials and mentoring for research advocates to improve skills and understanding of biomedical research, and attend the ASCO Annual Meeting.
- International Association for the Study of Lung Cancer (IASLC) Travel Awards for World Conference on Lung Cancer (WCLC)
Provides travel grants to WCLC, which is held in a different international city each year—it will be in Toronto Canada September 2018.
Our moderator Janet Freeman-Daily (@JFreemanDaily) will lead our discussion using the following prompts:
- T1: When a cancer patient/caregiver attends a medical conference, what are benefits to the patient/caregiver? Benefits to medical professionals? To the conference?
- T2: If you have attended a medical conference in which patients/caregivers participated, what did you like most about that conference? (Pls state whether you attended as patient, caregiver, or med professional)
- T3: If a cancer patient or caregiver wanted to attend a medical conference, which would you recommend for their first conference, and why?
- T4: What tips would you give a cancer patient or caregiver for making the most of their conference experience?
- T5: What programs help cancer patients and caregivers attend and/or afford conferences? Do you have experience with any of them?
We hope you’ll join our #LCSM Chat on Thursday 3/8 at 8 pm Eastern Time (5 pm Pacific). If you’re new to tweet chats, please read our primer “To Participate in #LCSM Chat.”
I hope you’ll support me and the Global ROS1 Initiative as we strive to accelerate research, find better treatments and hopefully cure ROS1 positive (ROS1+) cancer — which I have. Here’s a National Cancer Institute blog about the Initiative. This project is very dear to me.
If you’ve been meaning to contribute, or you have friends or family you’ve been meaning to ask to donate, do it today, or sometime before the end of the year! The recently-signed US tax law revisions may affect whether you can claim a tax deduction for your charitable contributions after January 1, 2018.
GO TO MY FUNDRAISER BY CLICKING HERE:
Janet Freeman-Daily’s ROS1 Research Fundraiser
Thanks for supporting ROS1+ cancer research—you could help save someone’s life someday. For those who want more detail about the project and fundraiser, read on!
Why research ROS1 Cancer?
My type of cancer is driven by an alteration in the ROS1 gene. Medical research has made it possible for me to live well with aggressive, metastatic ROS1+ lung cancer since 2011. However, ROS1+ cancer is uncommon (only 1%-2% of lung and other cancers) and not well understood. Only one approved ROS1-targeted drug exists, and patients eventually develop resistance to it. Little is known about how this disease begins, progresses and develops resistance to treatment.
Is my donation tax-deductible?
This fundraiser directs funds to the Bonnie J. Addario Lung Cancer Foundation (ALCF), a 501(c)(3) nonprofit (view their Guidestar page); monies are placed in an ALCF account designated for our ROS1 project. Donations are tax deductible under US tax laws.
What is the Global ROS1 Initiative?
I helped to create the Global ROS1 Initiative, a unique collaboration between ROS1+ patients, caregivers, researchers, clinicians, and industry. This is the first-ever effort initiated by patients to focus on cancer driven by a single genomic alteration anywhere in the body. We are initially funding projects in the US (takes time to learn about international research collaboration), but our patient group is global, with patients in 19 countries to date.
How did the Global ROS1 Initiative get started?
Who are the Global ROS1 Initiative partners?
- The ROS1ders (patients and caregivers dealing with ROS1+ cancers)
- Bonnie J. Addario Lung Cancer Foundation
- Addario Lung Cancer Medical Institute (ALCMI)
- Dr. Robert Doebele and Dr. Ross Camidge, University of Colorado Comprehensive Cancer Center
- Dr. Christine Lovly, Vanderbilt-Ingram Cancer Center
- Dr. Ignatious Ou, University of Colorado, Irvine Chao Family Comprehensive Cancer Center
- Dr. Manali Patel, Stanford University
- Dr. Alice Shaw, Massachusetts General Hospital
- Champions Oncology (specialists in making cancer models)
What research will the Global ROS1 Initiative fund?
Funds in the ROS1-designated account will be distributed by a panel of Global ROS1 Initiative representatives (including patients) to our projects. We are funding two projects at present:
- A survey conducted through Stanford University, which collects personal and health history data on ROS1ders. Researchers will study the data to look for possible causes of ROS1+ cancer, and evaluate effectiveness and sequence of treatment options.
- The ROS1 Cancer Model project, which is creating new models of ROS1+ cancer for drug development and research into our disease. In early 2017, only a few ROS1+ models existed, and they did not represent all the dozens of variations of ROS1+ cancer. In this project, we ROS1ders agree to donate our cancer tumor cells collected in the normal course of care to create cell lines and mouse models that researchers can use to study our disease.
How will the Global ROS1 Initiative accelerate research?
As part of our patient-driven approach, we aim to make our data and models widely available to the cancer research community instead of holding it in silos at individual institutions. We will be creating a biorepository of our specimens with annotated patient data, including making use of patient registries (like the Lung Cancer Registry) that share de-identified data will validated researchers. The cancer models we create will be distributed at minimal cost to researchers.
The ROS1ders also help spread vetted information about ROS1+ cancers to patients, caregivers, and the public. We donate our time to maintain and write content for the ros1cancer.com website which shares up-to-date information about ROS1+ cancer, names of ROS1+ experts, known treatments and their approval status globally, and available clinical trials focused on ROS1+ cancers. We also administer a private Facebook group in which ROS1+ patients and caregivers share their experiences, news about our cancer, and tips for living with our disease (more info on joining this group is here).
Please register for your free ticket(s) here:
Life & Breath (LAB) is a grassroots effort comprised of lung cancer survivors, caregivers, and advocates. We volunteer with various lung cancer organizations but have decided to come together as individuals for a common cause:
The Life & Breath Rally
Thursday, November 2, 2017, 11 a.m. – 1 p.m.
U.S. Capitol Building, Washington, D.C.
Lung Cancer is a National Emergency and must be declared as such. This step will allow an increase in desperately needed research funding. We represent the 433 Americans who die every day because of this disease, the deadliest of all cancers. Our goal is to have enough participants to stage a die-in of 433 people. We need Congress to see what this disease actually looks like.
The Rally will be held in Area 1 on the Capitol grounds from 11 a.m. until 1 p.m. (see this linked map): https://www.uscp.gov/sites/uscapitolpolice.house.gov/files/wysiwyg_uploaded/U.S.%20Capitol%20Grounds%20Demonstration%20Area%20Map.pdf
Participants are encouraged to bring their own signs, posters, etc., to the Rally, with the understanding that these items may not be brought into or near the Capitol Building. Members of the media will be invited.
Speakers will include members of the Congressional Lung Cancer Caucus (Rick Nolan, Debbie Dingell, Jamie Raskin as of 10/18) with cooperation from the office of Congressman Nolan, founder and co-chair. Congressman Nolan’s daughter, Katherine Bensen, a Stage IV lung cancer survivor, will also be in attendance, as well as former NFL player and noted lung cancer advocate Chris Draft, who lost his young wife to the disease, and Greta Kreutz, former D.C. news personality and lung cancer survivor.
As this is an unbranded, grassroots event, participants are free to wear clothing representing their favorite lung cancer organizations, if desired. All organizations and their volunteers are welcome. There will be no fundraising as we are not a nonprofit nor do we represent one. Our goal is to provide a unified presence for the purpose of Lung Cancer advocacy.
Participants are encouraged to make appointments on their own to see their elected U.S. Representative and Senators to occur after 1 p.m. when the Rally is scheduled to conclude. We can provide an informational packet, or participants are free hand out their own organizations’ literature when these visits are made.
You can find your elected officials here: http://act.commoncause.org/site/PageServer?pagename=sunlight_advocacy_list_page
Getting to the Capitol: https://www.visitthecapitol.gov/plan-visit/getting-capitol
Please contact us directly if you are interested in room and/or ride sharing. We will do our best to accommodate you.
Please register for your free ticket(s) here so we can get an idea of attendance numbers before the Rally: https://LABRally.eventbrite.com/
This page will be updated on a regular basis, so check back often.
Please join us for this important event!
WHAT HAPPENS AT ASCO?
ASCO takes place in McCormick Center on Lake Michigan in Chicago—few other conference centers are large enough to host it. My Fitbit claims I average five miles a day walking between sessions! ASCO fills the hotel rooms throughout the city, some of them nearly 6 miles away, and runs a fleet of a more than a dozen shuttle buses to ferry attendees between their hotels and the conference center.
A typical day for researchers starts around 7 AM and finishes around 10 PM. Many sessions are happening simultaneously, and it’s literally impossible to attend all sessions that mention lung cancer. The poster sessions alone have hundreds of posters to view, and you likely run into people you know either presenting their poster or talking about someone else’s poster. Fortunately, those who register have online access to the videos, slides, and posters so they can catch the sessions they missed.
In addition to conference sessions, attendees can wander a HUGE exhibit hall filled with pharmaceutical firms, biotech companies, publishers, cancer advocacy groups, and vendors of support services. Many attendees also schedule meetings with current or potential collaborators, funders, and trial sponsors, or are expected to attend one of the many cancer-related committee or steering group meetings that are held at a nearby hotel. Some patient advocates are so busy meeting with their grant recipients, researchers, and scientific advisory board members that they never get to attend a conference session! In the evening, attendees might attend a Continuing Medical Education meeting (complete with a free dinner), a reception hosted by an exhibitor or medical society, enjoy the many activities and entertainments Chicago has to offer, or meet with colleagues they only get to see at ASCO.
Below are highlights selected from over 2400 presentations relevant to non-small cell lung cancer (NSCLC), small cell lung cancer (SCLC), and mesothelioma. For more news from ASCO 2017, check out these resources:
- Browse Cancer.Net (ASCO’s website for patients). Two places to start:
http://www.cancer.net/research-and-advocacy/asco-annual-meetings (highlights from the meeting by day)
http://www.cancer.net/blog/ (patient-friendly blogs about major findings)
- Search ASCO 2017 abstracts at https://am.asco.org/abstracts
- Filter a Twitter feed (https://twitter.com/) for tweets containing both #LCSM and #ASCO17
Immunotherapy clinical trials
Lung cancer already has approved immunotherapy drugs, and new drugs are in development. These drugs are relatively new, and we still have much to learn. Researchers are studying how to detect which patients will be most likely to benefit from them, when they should be used in the treatment sequence, how they might best be combined with other drugs and with each other, how to detect and manage potentially severe side effects, and when to continue or discontinue treatment. Experts are still debating about the value of immunotherapy for patients who have driving mutations.
- SCLC: Early results show treatment with nivolumab (Opdivo) with or without ipilimumab (Yervoy) resulted in durable responses in patients with previously treated SCLC. Responses were seen regardless of PD-L1 status.
- Mesothelioma: Early research suggests immunotherapy (nivolumab or a combination of nivolumab and ipilimumab) may be effective for treating people with malignant pleural mesothelioma that has recurred after standard chemotherapy. More research is needed.
- NSCLC: Patients who are doing well clinically on atezolizumab when their cancer begins to progress may benefit from continuing on the drug after progression.
- NSCLC: First-line treatment with pembrolizumab (Keytruda) instead of chemo resulted in fewer patients requiring second-line cancer treatment — the patients on Keytruda had a longer time without progression after first line treatment.
TARGETED THERAPY CLINICAL TRIALS
Targeted therapy drugs bind to specific mutated proteins in cancer cells and inhibit the cell’s cancer-like behavior, instead poisoning both healthy and cancer cells as chemo does. Those that treat cancer for lung cancer are usually in a group called tyrosine kinase inhibitors (TKIs), and each drug targets genomic alterations in specific genes. In lung cancer, approved TKIs exist for alterations in EGFR, ALK, ROS1, and BRAF genes. However, many more drugs are in clinical trials to target alterations in other genes such as HER2, MET, TRK, and RET, and research is being conducted on other genomic alterations as well.
- EGFR mutations: As a first-line treatment, dacomitinib provided five months longer progression-free survival than gefitinib (an FDA-approved TKI). However, dacomitinib also caused more severe side effects.
- EGFR mutations: Stage 2 and 3A patients who had lung cancer surgery went about 10 months longer without cancer recurrence on gefitinib (an FDA approved TKI) than patients who received chemotherapy (vinorelbine plus cisplatin). The patients on gefitinib were also less likely to experience side effects.
- EGFR mutations: Osimertinib was superior to chemotherapy in treating brain metastases for patients whose tumors have the T790M resistance mutation.
- ALK fusions: Alectinib (an FDA-approved TKI) provided about 15 months more progression-free survival than crizotinib in first-line treatment. It also caused fewer side effects. This may signal a change in standard of care for ALK+ NSCLC.
- ALK fusions: Lorlatinib showed compelling effectiveness in the body and brain for patients who had previously received one or more prior ALK TKIs.
- TRK fusions: Larotrectinib (LOXO-101) may be an effective treatment for adults and children whose cancers test positive for TRK fusions. This trial is open to all solid tumors.
- MET Exon 14 deletion: Treating stage IV patients with crizotinib had significant survival benefit. This mutation occurs in 3% of NSCLC. Prognosis of patients who did not receive a MET TKI was poor. (This was a retrospective analysis of patient data, not a clinical trial). http://abstracts.asco.org/199/AbstView_199_194689.html
- The design of precision medicine clinical trials: As more driving mutations are identified that affect a small subset of cancer patients, randomized clinical trials are becoming less useful—it’s too difficult to collect a group of patients that’s large enough to gather statistically significant data. Some ASCO sessions discussed how clinical trials should be restructured to accommodate the smaller patient populations and still generate the data needed to obtain approval of new targeted drugs. More clinical trials are being designed as “basket trials” that accept all solid tumors with a specific genomic variation.
Cancer research involves more than just developing new drugs. Clinical trials are also used to improve existing treatments.
- Radiation for symptoms of spinal cord compression. A study of 688 people with metastatic cancer found that a single dose of radiation therapy is as effective as five doses of radiation therapy for metastatic spinal cord compression.
- Cisplatin for elderly patients: Cisplatin should not be added to single-agent chemotherapy for elderly patients (ages 70 and older). Adding cisplatin does not improve overall survival, and results in more severe side effects.
- Prophylactic Cranial Irradiation (PCI) for NSCLC: For stage III NSCLC patients who receive radical therapy. PCI significantly reduces the proportion of patients developing symptomatic and asymptomatic brain mets, but does not increase overall survival. PCI decreases global quality of life at 3 months after treatment, with no further decrease after that.
Precision medicine means personalizing cancer treatment to a specific patient’s situation as well as their cancer’s characteristics. In addition to presentations about treatments, ASCO has an increasing number of presentations about ways to identify the best cancer treatment for each patient, and to ensure patients get accurate and affordable diagnostic testing.
- Biomarkers for immunotherapy: Several presentations explored “tumor mutational burden” (a measure of the number of mutation present in a cancer tumor) as a biomarker to indicate which patients might benefit from immunotherapy. Other presentations sought to define how PD-L1 should be used to identify patients for immunotherapy. Some blood tests that look for certain proteins may be useful in identifying whether an immunotherapy is working before evidence is detectable on a scan.
- Biomarkers for targeted therapy: Genomic testing of cancer tumors can identify patients who may benefit from targeted therapy. New technologies and methods are being evaluated to determine the most accurate and cost-effective testing methods. A French study of 1,944 patients (http://www.ascopost.com/News/55703) found widespread genomic profiling was feasible, but not all patients tested positive for a treatable mutation.
- Liquid Biopsies: Several studies explored the value of ctDNA blood tests (one type of liquid biopsy) for early detection, monitoring patients for progression or recurrence, and identifying tumor characteristics that might be used to guide treatment. Several academic cancer centers are now using liquid biopsies to identify potential targeted therapies for a patient, with the understanding that such tests are have not yet achieved high accuracy. If the liquid biopsy results find an actionable mutation, they will prescribe the associated targeted therapy; if the tests are negative, many experts say they will pursue a tissue biopsy to validate the results. One study that used blood and urine tests to detect the T790M mutation found drug response to a positive tissue biopsy was similar to the response to a positive blood or urine biopsy (http://www.cancernetwork.com/asco-lung-cancer/plasma-urine-tests-can-help-detect-egfr-t790m-mutations-nsclc ).
Treating a cancer patient involves more than just prescribing a treatment that hopefully will shrink a tumor. ASCO sessions also address ways to make patients more comfortable, deal with psychological needs, and improve communication between patients and healthcare providers. Patient reported outcomes (pat
- Cost or financial toxicity of cancer care were topics in 174 sessions, some of which included patient advocates as presenters and/or panel members.
- Goals of care discussions and shared decision making (both of which involve the patient as a member of their own care team) were topics in 21 sessions.
- Patient reported outcomes (quality of life measures reported by patients to their healthcare providers) were the topic of 112 sessions.
- Results from a clinical trial of 766 people with advanced cancer showed that a simple web-based tool can help patients live longer. The tool allows patients to report their symptoms in real time and then alerts their health care team if severe or worsening symptoms are reported.
- “Conquer Fear” face-to-face therapy program lowered fear of cancer recurrence more than relaxation training provided over the same 10-week period.
- An 8-week, web-based stress management program called STREAM lowered distress and improved quality of life for people newly diagnosed with cancer.
- Advanced cancer patients in a talk therapy program called CALM had fewer symptoms of depression and improved psychological well-being than those who received only screening for distress and basic psychosocial care.
This document was distributed at the July 18, 2017 Bonnie J. Addario Lung Cancer Foundation’s Lung Cancer Living Room.