I’m excited to be one of the handful of patients speaking in a public forum tomorrow evening at The Broad Institute in Boston, Massachusetts (well, technically, Cambridge). We’ll be sharing our “Lessons for Creating Patient‐Researcher Partnerships to Accelerate Biomedical Progress.” I get to talk about the founding of the ROS1ders and the Global ROS1 Initiative.
A host of engaged patients, cancer researchers, and other healthcare types, among them the American Society for Clinical Oncology and the Biden Cancer Initiative (which grew out of the Cancer Moonshot) will be there. This could be the start of something BIG. At a minimum, it will spontaneously generate a HUGE group hug with advocate friends old and new.
Coincidentally, we’ll be staying at a hotel just a few blocks from my old MIT dorm during MIT Reunion Weekend. I’ll be too late for reunion festivities–attending the ASCO Annual Meeting last week took priority. Still, I’ll wander over on my knee scooter (still healing after foot surgery) in the 90º-plus heat. I ought to be able to reflect on my crazy undergrad days on Third East in the East Campus dormitory for at least five minutes before seeking refuge inside an air-conditioned building. Next year I plan to indulge in my 40th MIT Reunion–I didn’t expect to live long enough to see it, and I’m going to take full advantage of the the opportunity!
If your loved one was treated for lung cancer at a community hospital, and has since died, you can help find new lung cancer treatments that might spare other families the anguish you’re feeling.
Lung cancer is the biggest cancer killer. Fortunately, researchers have discovered several new therapies that are helping to turn metastatic lung cancer into a chronic illness instead of an automatic death sentence. Some of these therapies are effective for 70-80% of patients whose tumors have certain biomarkers .
Unfortunately, not all types of lung cancer have such effective treatments — yet. Researchers need to find more lung cancer biomarkers and develop more drugs to target them. Discovering these biomarkers and new therapies requires studying LOTS of lung cancer tumor tissue. If more tumor tissue from different patients were available for researchers to study, we might find new biomarkers and effective targeted therapies faster.
How can I help?
If your loved one was treated for lung cancer at a community hospital, and has since died, you can help by donating your loved one’s archived tumor tissue.
Researchers usually obtain tumor tissue from lung cancer biopsies and surgeries performed at their academic cancer centers. However, most lung cancer patients (about 80%) are treated at community and clinics, not academic cancer centers. Those hospitals generally just archive any tumor tissue that is not needed for guiding patient care, and destroy those tissues five to ten years after the patient has died. This means a lot of tumor tissue that could be used for finding new lung cancer therapies never gets to researchers.
The National Cancer Institute’s Lung Cancer SPORE at the University of Colorado (I’ll call it CU Lung SPORE for short) aims to help lung cancer researchers find cures faster. Like other NCI SPOREs, CU has a biorepository (some people may call it a biobank) where they store patient specimens and medical records. The biobank provides the tissues along with the important clinical background to scientists studying new ways to treat lung cancer, not only from the University of Colorado, but to institutions all around the country. Researchers can search for available specimens and request them for research projects.
The CU Lung SPORE created a pilot study to collect archived tumor tissue and medical records of deceased lung cancer patients, and place these in their biobank so that researchers can use them. This study focuses on deceased patients because they have no further need of the tissues (living patients may need their specimens for tumor testing later). The study needs five to ten more family members to submit signed release forms so we can complete the pilot study and assess whether this a feasible way to gather more lung cancer tumor tissue for research.
HIPAA laws forbid a research center from asking patients or family members about donating tissues and medical records if the patient wasn’t treated at their facility. But advocates (like me) CAN ask.
What do I have to do?
To participate, all you need do is:
- Download the release form (by clicking on this link Family member Release Form (revised 2016-06-23) and fill in some information about you, your loved one, and where your loved one was treated,
- Sign the release form, and
- Mail the completed, signed release form to:
- Mary K. Jackson
- Team Manager – Specialized Program of Research Excellence [SPORE]
- University of Colorado Cancer Center
- 13001 E 17th Place MS B-189
- Aurora, CO 80045
Filling in the release form only takes about 20 minutes (assuming you have to look up the contact information for the hospital). Pretty easy, isn’t it?
What happens next?
The SPORE will contact the hospital where your loved one was treated and request your loved one’s archived tissue and medical records. Once these documents are received at CU, they will be reviewed by the study team, de-identified (which means personally identifying information is removed), and placed in the CU Lung SPORE’s biobank.
PLEASE consider donating your deceased loved one’s archived lung cancer tissue and medical records for research through this project. You can learn more by contacting me (the patient advocate for the CU Lung SPORE) at email@example.com, or the CU Lung SPORE at the address above.
Do it to honor your loved one. Do it for the next family stricken by lung cancer. Whatever your reason, please do it. We’ve lost too many to this disease.
Note: This research study’s official project title is “Patient-Initiated Biobanking of Deceased Lung Cancer Patient Tissues” and its study number is COMIRB# 15-1294. It is not a clinical trial dealing with live patients, so you will not find it listed on clinicaltrials.gov.
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
This is a repost from the ROS1der blog.
The ROS1ders have partnered with the Bonnie J. Addario Lung Cancer Foundation (ALCF) with the goal of accelerating research into cancers that are driven by ROS1 fusions, or ROS1-positive (ROS1+) cancer. Here’s more about how this project started.
This blog post summarizes one project of this initiative: the ROS1 biorepository. The biorepository will collect tumor tissue and other specimens from patients who have ROS1+ cancers. Some of the tumor tissue will be used to create cancer models of ROS1+ cancer.
Having more models of our rare cancer will greatly accelerate research. Cancer models have long been used to study molecular mechanisms of disease, research biologic processes, and develop new cancer treatments. Researchers need many different models of ROS1+ cancer from many different patients to develop more effective treatments that are likely to work for most ROS1+ patients. Cancer models are especially important for assessing the effectiveness and toxicity of combination therapies before testing them on patients. We need lots of ROS1+ tumor tissue samples because these models are difficult to create, and a given tumor sample does not always generate a useful model.
If you would like to help make this project a reality, please use the “Contact Us” form and let us know. If you’re a ROS1der and want to help define the project, please post about your interest as soon as possible in the “ROS1 Positive (ROS1+) Cancer” Facebook group
Thanks to Bonnie J. Addario Lung Cancer Foundation, Dr. Robert Doebele of the University of Colorado, Jackson Laboratory, and Champions Oncology for helping to ensure the accuracy of this post.
Q: What is the ROS1 biorepository project?
The biorepository project aims to accelerate research into rare ROS1+ cancers by creating more ROS1+ cancer models. It will create a process that allows ROS1+ patients to donate live tumor tissue from an already-scheduled biopsy or surgery, and move those tissues quickly (within 24 hours) to a lab that has technology to create cancer models. The models will be made available to academic researchers at minimal cost to study cancer biology and test new drugs that might be useful in treating ROS1+ cancer.
Q: Why is this project needed?
Because ROS1+ is a rare cancer, only a handful of researchers currently study it, and their research clinics don’t see many ROS1+ patients. As a result, only a few ROS1+ models exist. Thus far, most diagnosed ROS1+ cancers are lung cancers, and biopsies of those cancers typically generate only small tissue samples that aren’t large enough to generate cancer models. In addition, ROS1+ models are difficult to create—the collected tissues sometimes die despite best efforts, which limits the amount of research that can be done with them. Without a large selection of ROS1+ cancer models from diverse patients, researchers and drug developers are less likely to find treatments that are effective and tolerable for most ROS1+ patients.
The ROS1der patient/caregiver group currently contains over 120 patients with different types of ROS1+ cancers (e.g., lung cancer, melanoma, angiosarcoma) from 16 countries, and our numbers are increasing. With this large number of ROS1+ cancer patients, we hopefully can generate many useful tissue samples and increase the odds of creating successful cancer models.
Deciding to donate tumor tissue is not something patients undertake lightly. It requires a personal commitment (as well as planning and coordination) during a time when a cancer patient is dealing with invasive medical procedures and the anxiety of possible or confirmed metastatic cancer progression. This project will help ease the process by allowing patients to commit to tumor donation ahead of time, when stress levels are reduced and the patient and their healthcare provider have time to have the right conversations and make the necessary arrangements. And even after patients join the project by signing a consent form, they can still choose later not to donate tissue.
Q: What are cancer models? Why are they useful?
Cancer models are clumps of living cancer cells that exist either in a lab petri dish, or in animal models such as mice. The best models are derived from actual patient tumors. Sometimes these models include additional cells, molecules and fluids (the “microenvironment”) that exist near cancer cells in the human body—white blood cells and other immune system cells, proteins, bits of DNA, and such. These models are kept alive and used to create more cancer cells for current and future research. Amongst ROS1+ cancers, each tumor can have subtle differences, so it is important to have multiple models to ensure that any treatments that are identified can work for many types of ROS1+ cancer.
These models are valuable tools for cancer researchers. Academic cancer researchers use them to study ROS1+ cancer cell biology, identify new cancer treatments or treatment combinations, and understand mechanisms of resistance. Pharmaceutical companies use these models to screen many drugs as the final test before deciding to commit to a clinical trial of a new drug or combination. Diagnostic companies use these models to validate or develop new genetic or other biomarker tests.
Q: What types of ROS1+ cancer models will this project create?
The two types of cancer models our vendors will create are ROS1+ cancer cell lines and patient-derived xenograft (PDX) mouse models. These models allow us to understand the biology of ROS1 cancers and how to stop their growth or kill these cancer cells. Each model has its own advantages and disadvantages.
What are cell lines?
Cell lines are clumps of living cancer cells grown in tissue culture dishes in the lab. To create a cell line, fragments from a patient’s tumor are put in cell culture media in a special incubator (see Figure 1), then routinely monitored until cell lines are detected. The cells will continue to reproduce instead of dying at their pre-programmed time. This creates an ongoing source of cancer cells for research. You can learn more about creating cell lines in this Science magazine article.
What are PDX models
PDX models, or patient-dervived xenograft models, are human tumor tissue grown under the skin of specialized mice whose immune systems have been severely compromised. The compromised immune system helps ensure the mouse’s body will not attack the human cancer cells. To create a PDX model, scientists cut a human cancer tumor into pieces, mix it with a chemical that helps the cancer cells survive, and then implant the pieces under the skin of many mice. Sometimes these don’t “take” but often, each fragment grows. Once the tumor reaches a certain size, it is removed from that mouse, chopped into pieces and put into more mice. This process is repeated (see Figure 2) until there is enough tumor tissue to put into 100s of mice, each with tumors nearly identical to each other and to the original human patient’s tumor.
Q: What are the advantages and drawbacks of these models?
Researchers often use cell lines initially to test hypotheses about a cancer, and then later use PDX models to do large-scale drug testing to confirm their cell line results. At present, neither model can be used to test immunotherapy drugs because neither include a functional human immune system.
Cell line advantages:
They grow fast and are relatively easy and inexpensive to store (requires only a monitored freezer) and transport. They can be used to rapidly and cheaply test multiple drugs or drug combinations. They can be easily manipulated to study cancer cell biology (for example, what causes resistance mutations) and explore different ways to kill the cancer cell.
Cell line disadvantages:
The processing used to make the cells grow perpetually may favor some cells and allow others to die, so the resulting model does not precisely resemble the original tumor. The cells change over many generations, so their characteristics may become significantly different than those of the original tumor cells. They do not include the tumor microenvironment.
PDX model advantages:
PDX models are thought by some to more faithfully represent a human cancer tumor. They may preserve some of the tumor microenvironment. They are grown in a living host instead of a lab dish. They can be used to simultaneously evaluate the effectiveness of different drug or drug combinations in a living organism, and provide in-depth understanding of tumor response to experimental therapies at a fraction of the cost of a clinical study. They can be used to identify potential biomarkers of drug response or resistance. They might allow tumor tissue to propagate longer without suffering genetic degradation. They can be manipulated to create cell lines.
PDX model disadvantages:
They are more costly and time-consuming to make and maintain, because the mice the mice require housing, feeding, and care. Because of this, they are not practical for large-scale testing of multiple drug combinations. They might tend to propagate only the human tumor cells that are compatible with mouse biology.
Q: How long does it take to create a cancer model?
Successful creation of cell lines and PDX models will require four to twelve months after the tissue donation is received.
Q: Will my tissue donation result in new treatments for me?
No, these models will not generate new treatments fast enough to help individual donors. Because creating the models, conducting research, and testing new drugs takes years, the donated tissue will not generate new drugs in time to help those of us who currently have ROS1+ cancer. However, you will be helping to accelerate discoveries and new treatments that will improve outcomes for future ROS1+ cancer patients. Please donate only tissue you do NOT need to make decisions about your own cancer treatment.
Q: What kind of tissue is needed for donations, and how much?
Fresh ROS1+ tumor tissue is necessary for creating successful cell lines and PDX models. Ideally, the lab begins the process of creating the cancer model within 24 hours of collecting the tumor tissue. The more tissue, the better the chance of success–at least three biopsy cores of tissue (using 19 gauge needles) are needed.
Other types of specimens may also be useful. We are evaluating whether the biorepository will also collect the following
- Pleural effusion fluid (for creating cell lines and PDX models)
- Frozen ROS1+ tumor tissue (for extensive genetic analysis–the genetic material is better preserved)
- Formalin-fixed ROS1+ tumor tissue–the typical storage method for pathology specimens (if this is the only tissue available)
- Blood, urine and saliva samples (for studying circulating tumor DNA and circulating tumor cells)
- Healthy tissue collected at the time of biopsy or surgery (can determine which mutations are present in the patient’s healthy cells)
Q: Will all donations create a successful cancer model?
No. Success depends on many things, such as the amount and quality of the tissue, and the time elapsed between harvesting the tissue and starting the cancer model process. Estimates suggest 20-50% of donations result in a successful model.
Q: Who can donate tissue?
Any living ROS1+ cancer patient whose tissue was collected in the USA may donate tissue and specimens. However, because the tissue must be in the lab and ready for processing within 24 hours of harvesting, transportation and/or shipping constraints may make it impractical for some patients to donate.
We are currently collecting tissue only within the USA because many national and international laws prohibit transferring biospecimens across borders. We are exploring ways to ensure all ROS1+ patients, regardless of where they are treated, will have the option to donate tissue and other specimens to this project. Hopefully the project will eventually also include a process for patients or their family members to donate a patient’s tumor tissue after they die.
Q: If I want to donate tissue, what must I do? What will be required of me?
Prospective participants must sign a consent form to indicate their interest in donating, and inform the project when they have an upcoming biopsy or surgery. We will work with you and your healthcare provider to make sure your tissue gets to the right place on time. We will also collect your cancer medical history records so that researchers will have necessary background information about the tumor tissue (your personal identifying information will not be shared with the cancer model vendors). Donors will not have to bear any costs of the donation process. We are currently developing the consent form and the donation process materials which will clarify the process. After signing the consent form, you may still choose not to donate (but we hope you won’t).
Q: Will the resulting cancer models and associated clinical data be available to all researchers?
Yes. Our goal is to make the resulting ROS1+ cancer models and associated data available to all interested academic researchers for minimal cost.
Q: Who will create the cancer models?
The Bonnie J. Addario Lung Cancer Foundation is currently negotiating with academic and commercial labs that create cell lines and PDX models.
Q: When will the biorepository begin accepting tissue donations?
We plan to choose the model vendor(s) by March 3, 2017, and then begin finalizing consent forms. Distributing & collecting consent forms will be an ongoing process, but we’d like to collect as many as possible in the first few months to help ensure most ROS1ders will be able to make use of this tissue donation opportunity.
Q: I have a biopsy coming up soon. Can I donate now?
We are working on an interim solution for specimen donation while we finish defining the project.
Reminder: If you would like to help make this project a reality, please use the “Contact Us” form and let us know. If you’re a ROS1der and want to help define the project, please post about your interest as soon as possible in the “ROS1 Positive (ROS1+) Cancer” Facebook group.
I know the ACA is not perfect. I applaud any effort that will improve healthcare coverage in the US. But repealing the ACA without a suitable replacement is not going to solve our health care crisis.
If you allow pre-existing conditions and lifetime caps to be reinstated, you will be forcing an estimated 14,140,254 cancer patients to choose between bankrupting their families, or foregoing treatment (and probably dying).
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.