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!
My blood pressure and sleep cycle took a serious hit last night, and it wasn’t my cancer acting up.
I was online researching the details of my 2018 health plan. I had already made my selection during Open Enrollment–only one plan met my needs. I was digging deeper into my 2018 coverage for more major changes–like my copay for medical visits jumping from $15 to 10%. I had to search for a link, that wasn’t at all obvious; finally I found “Annual Enrollment has Closed. View your future coverage” and clicked.
Much to my surprise, Boeing’s benefits website said I had chosen a new 2018 health plan. A quick review of terms showed it didn’t cover my Colorado clinical trial!
My heart rate shot up. My throat got tight. My breathing accelerated. That trial has kept me alive for five years and counting, and provided my expensive targeted therapy drug for FREE. Another clinical trial is my best hope for staying alive when this cancer drug fails me (as it is likely to do); both ROS1 trials and ROS1 expert oncologists are virtually non-existent in my home state of Washington. My Colorado oncologist is among the handful of world experts in my type of cancer and has access to all the ROS1 clinical trials. If I didn’t have access to out-of-state experts at academic cancer centers, my hopes of long-term survival were greatly diminished. It would be bigly expensive to pay for out-of-state medical care personally–about $10K for each clinic visit that included a scan.
Hubby wasn’t home and not available by phone, so I texted a couple of fellow patient advocates and snuggled kitties to calm myself until I could think things through.
Could it be a glitch in Boeing’s benefits website? I had a message on file from Boeing saying I would have the same health plan unless I directed them to change my plan. Yet when I clicked on that link ‘view your future coverage” link I was in a different health plan that only had access to selected clinics near Seattle, not the Blue Cross Blue Shield (BCBSIL) national network I’d been in for years.
Did I click on the wrong button during open enrollment? My brain doesn’t remember things as well as it did BC (before cancer), but I was pretty sure I hadn’t seen a screen that said anything like “confirm your change in healthcare plan.”
Might Boeing take pity on a metastatic cancer patient with chemobrain and allow me to change my plan, if indeed I’d chosen the wrong plan? A fellow metastatic lung cancer patient said her plan allowed her to make a change after open enrollment closed when she realized she’d missed the deadline. I certainly hoped Boeing would be equally understanding if I’d made a mistake.
Alas, I couldn’t take any action last night, as Boeing Benefits was closed for the day. My only option was to call first thing in the morning.
I had a bad night.
Fortunately, this morning Boeing Benefits confirmed they had misleading info on their website. I still have my excellent BCBSIL coverage for 2018. I can continue in my clinical trial and have most of my medical expenses covered.
However, I suspect this is not the last such panic I will experience. I suspect we chronically and seriously ill patients in the USA will be facing more insurance-related shocks over the next several years.
Last year, several friends who are self-employed cancer patient/advocates on Affordable Care Act plans discovered their longtime oncologists at academic cancer centers were no longer covered by any plan on the ACA. This year, another cancer patient discovered their health plan’s 2018 formulary dropped their expensive, life-saving targeted therapy cancer drug (which costs upwards of $10,000 per month in the US). Uncertainty in the insurance market and proposed changes in subsidies and and the tax code threaten to drive up insurance costs even faster. As insurers leave the market, some patients can no longer find plans in their geographic area that cover their needs.
And, when I turn 65 in a few years and become eligible for Medicare, Boeing will no longer provide health coverage for me (that’s another long story). I’ll have to change to a far more expensive and less comprehensive Medicare plan–assuming Medicare is still around.
“Who knew healthcare was so complicated?” Ask any patient with serious health conditions.
As more patients lose healthcare coverage options, the healthcare system may have to add a new code: Death from health insurance changes.
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.
We are happy to announce a new upcoming anthology tentatively titled “Life Between Scans: How to Live with Lung Cancer as a Chronic Illness.” Its personal essays will show how metastatic lung cancer patients and their loved ones cope with the emotions and situations that arise when you’re taking new precision medicine treatments and know your lung cancer could become terminal at any time.
A group of award-winning lung cancer bloggers is developing this book to share honest personal experiences, offer hope for those dealing with metastatic lung cancer, raise awareness and positive impressions of our disease, and encourage investment and participation in lung cancer research and supports. These stories will highlight lung cancer patients on precision medicine approved drugs and clinical trials who are living well for months or years longer than those on traditional chemotherapy.
All submissions will be reviewed by the group, with assistance from editor Ann Vandermeer, who has extensive anthology publishing experience both for New York publishers and as a freelancer. Ann has graciously donated her time to this project in support of cancer patients.
Example Essay Topics (not a complete list)
- The shock of diagnosis or cancer progression
- Handling stigma and guilt
- Taking care of yourself (as patient, or as caregiver)
- Telling (or not telling) others about the cancer
- “Why me?”
- Making the choice to live despite the downsides
- What matters most now? How has that changed after cancer?
- Making major treatment and care decisions
- Finding the next step for treatment
- Why you did (or didn’t) join a clinical trial
- How manage emotions: anxiety, fear, uncertainty, depression, need for control
- Becoming an engaged patient or advocate
- Dealing with symptoms or side effects (pain, cognitive issues, losses, etc)
- Having “The Conversation” with family about end of life
- Being the first on a new treatment
- When your doctor doesn’t have much experience with your treatment or cancer
- Finding supports or dealing with loss of supports (e.g; loss of friends)
- Use of complementary therapies (massage, acupuncture, meditation, etc.)
- Transitioning to hospice
- Navigating the healthcare system (e.g., coordinating specialists)
- Effective communication with healthcare providers
- Value of patient communities
- How to stay on top of science and research without getting overwhelmed
- How do you forget about cancer and enjoy life in the moment?
- Role of the care partner in chronic disease management
- Financial toxicity
- How can caretakers and patients both speak honestly about how they feel?
- Humor as a diversionary/coping mechanism
July 1, 2017
- Essays should be between 750 to 2,500 words. Accepted file types are MS Word, .rtf, and .txt. Please use 12 point Times New Roman font, double spaced, and ensure your legal name is included at the beginning of the file.
- Essays must be written in first person, and should reflect actual personal experience of either a metastatic lung cancer patient or a primary caregiver of a metastatic lung cancer patient.
- Essay can be either original work not previously published, or material you personally published on your online blog or in an online support group.
- Essays from deceased patients may be submitted if the patient meets the criteria above AND the person who is submitting can demonstrate they have the legal right to submit the essay.
- If a metastatic lung cancer patient/caregiver blog post has touched or inspired you, please submit a link via email so we can review it and contact the author.
- Each submission will receive an email acknowledging its receipt
Rights and Payments
- Acceptance decisions will be made by late summer 2017. If your submission is accepted, you will be notified by email along with a contract for consideration. If you do not receive a notification by the end of September 2017, your work was not accepted for publication.
- We will pay $0.10/word on final edited word count for nonexclusive worldwide right to print, republish, or reprint the complete anthology in any language or format. Payment will be made upon final edit.
- Contributors will receive two copies of the book.
- If authors have other questions about rights or payments, please contact us before submission. We want to make sure all concerns are addressed.
How to Submit
Send an email to firstname.lastname@example.org and include the following:
- Your personal essay (as an attachment)
- A BRIEF biography (no more than 100 words) for inclusion in the book. At a minimum, this must include:
- your name (a pen name is OK, but a real name will have more impact for readers)
- date of diagnosis
- type of lung cancer (as specific as possible)
- where you live (state & country, with city if possible)
- link to your blog or website (if you have one)
You might also want to include your age at diagnosis, relationship status (married, single, committed partnership, etc.), ages of children at diagnosis, and clinic(s) where you were treated. This information can help inspire readers.
- For payment purposes, please provide the following in the body of the email:
- your legal name
- mailing address
- preferred contact email
- contact phone
Please be sure the contact email and/or phone will be answered even if you are unavailable.
Where will the book be published?
We are negotiating with a small press to get the book published. We expect the book will be available in hardcopy and in electronic format from online sellers.
What will happen to the income from book sales?
One of our bloggers is funding this project personally. After the payments to authors and production costs are covered, proceeds from the sale of the book will be designated in perpetuity to support lung cancer research at the University of Colorado, one of the premier targeted therapy lung cancer research centers in the world.
Who is on the editorial board?
In alphabetical order:
- Janet Freeman-Daily (blog: Gray Connections)
- Lisa Goldman (blog: Every Breath I Take)
- Linnea Olson (blog: life and breath: outliving lung cancer for the terminally optimistic)
- Tori Tomalia (blog: A Lil’ Lytnin Strikes Lung Cancer)
- Ann Vandermeer, professional editor
Last update: 6-Mar-2017 16:00 Pacific Time
I am honored that I was asked to be the featured guest for the #CureChat on Twitter this Thursday, January 12th, 2017 at 1 pm ET. We’ll be talking about precision medicine and clinical trials. You can read more about it on the Cure Forward blog. Hope you can join us!
Chat Topics (from the Cure Forward blog):
T1. Janet Freeman-Daily’s Story (my lung cancer story, told 140 characters at a time)
T2. What does the term “precision medicine” mean to you and how does it connect to clinical trials?
T3. Tell us about the ROS1 Mutation.
T4. What were your biggest fears and misconceptions about clinical trials before finding out about them via an online community?
T5. How did it feel to be accepted into a trial? What emotions, and why? And how did you manage them?
T6. What are some of the positive aspects of clinical trials that most people don’t know about?
T7. Please share some online resources where you find trustworthy info for lung cancer and clinical trials.
You can follow the conversation in Twitter by entering “#CureChat” in the search box to filter tweets. However, if you haven’t joined a tweetchat before, you may find the conversation easier to follow if you use a tool designed for tweetchats, such as tchat.io. To use tchat.io, do the following:
- Login to Twitter (you must have a Twitter account to do this)
- Type “tchat.io” in the URL of your browser, then hit the “enter” key. The tchat.io entry page will appear.
- Type “#CureChat” in the box that says “enter hashtag,” then left-click on the colored box that says “Start Chatting.” You will be taken to a page that has a big blank textbox at the top, and a list of recent tweets that contain the hashtag “#CureChat” below.
- Left-click on the link just below the textbox that says “sign in.” A popup window will ask if you want to authorize tchat.io to access to your Twitter account. Left-click on the box that says “authorize app.” You will return to the tchat.io page.
- Left-click on the link above the textbox that says “hide retweets.” This will eliminate duplicate tweets and make the conversation easier to follow.
Now you can follow the #CureChat conversation on the tchat.io page. If you want to contribute to the conversation, type your own tweets into the textbox at the top of the page. Tchat.io will automatically add the hashtag #CureChat to the end of your tweet so your tweet will appear in the conversation.
However you choose to follow the chat, if you want to respond or direct a question to someone in the chat, be sure to include their Twitter handle (e.g., @JFreemanDaily is my handle) at the beginning of your tweet.
Thanks to Liza Bernstein (@itsthebunk) and the Cure Forward team for inviting me to be their guest in this chat. I look forward to seeing you on Thursday! I will post the link to the Storify summary of the chat HERE once the Cure Forward team posts it.
Cancer clinical trials can be a good treatment option. Today I’m giving a signal boost to a great post on CURE Today by my amazing clinical trial oncologist, D. Ross Camidge, MD, PhD, at University of Colorado. He’s written a nice overview of the benefits and pitfalls of cancer clinical trials for patients.
If you have been diagnosed with advanced non-small cell lung cancer (NSCLC), please read this blog post. It could buy you months or years of good living. Lung cancer treatments are advancing so fast that your cancer doctor may not know this information–even if they are at a major academic cancer center.
Scientific evidence is accumulating that genomic testing and targeted therapies for cancer patients who have advanced non-small cell lung cancer make a significant difference in outcomes. By “significant difference,” I mean a year or more of survival with good quality of life. Genomic testing and a targeted therapy have given me no evidence of disease for four years despite my metastatic lung cancer. Now THAT’s is a significant difference!
Genomic testing looks at the cancer cells DNA for alterations in certain genes that may be driving the cell to act like cancer. FDA-approved drugs are available that can target some of these driver genes (EGFR, ALK, and ROS1) and inhibit the cancer–these drugs are called “targeted therapy.” Targeted therapy for other driver genes are available through clinical trials. These drugs do not cure, but they are usually more effective and more tolerable than chemo. Not every NSCLC cancer will have a driver gene, and not every driver gene has an effective treatment. However, it’s worth investigating, because about 60% of NSCLC adenocarcinoma patients likely DO have a driver gene that can be targeted with an approved or experimental drug (per the LCMC II study).
Guidelines from the College of American Pathologists (CAP), the International Association for the Study of Lung Cancer (IASLC), and the Association of Molecular Pathologists (AMP) recommend analyzing either the primary NSCLC cancer tumor or a metastatic tumor for EGFR and ALK, regardless of patient characteristics (such as age, race, or smoking history). The National Comprehensive Cancer Network guidelines for metastatic non-small cell lung cancer strongly recommend testing for alterations in EGFR, ALK, and ROS1 genes, as well a broader genomic panel to look for driver genes that might have clinical trials available.
A recent article is a great reference on this subject for both physicians and for patients who want to learn more about their options. It discusses evidence-based molecular testing options, driver genes, and available targeted therapy options, including off-label use of FDA-approved drugs for patients whose cancer mutation does not yet have an approved treatment. It also provides references to professional society guidelines and key journal articles. The authors are Lecia V Sequist, MD, MPH (Associate Professor of Medicine, Harvard Medical School–an EGFR superdocs and a member of LUNGevity’s Scientific Advisory Board) and Joel W Neal, MD, PhD (Assistant Professor of Medicine–Oncology, Stanford University/ Stanford Cancer Institute).
Those of you with advanced NSCLC might want to share the article with your cancer doctor.
Personalized, genotype-directed therapy for advanced non-small cell lung cancer by Lecia V Sequist, MD, MPH, and Joel W Neal, MD, PhD
Research and new treatments are moving faster than most cancer physicians can track. Patients with advanced NSCLC can increase their chances of survival if they learn more about their disease. I hope this blog helps you do that.