NCI Features the ROS1ders on its CCG Blog

Today the National Cancer Institute published this blog about the ROS1ders on the Center for Cancer Genomics “Insights and Innovations” blog.  The Global ROS1 Initiative is underway!  I’m glad I was able to help share our story.
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ROS1+ Cancer Patients Partner to Increase Research

May 23, 2017, by Janet Freeman-Daily, MS, Eng

In May 2015, I met four friends in a bar near Washington, D.C., to talk about not dying of cancer.

This conversation planted a seed that has grown into The Global ROS1 Initiative, a patient-researcher partnership that is redefining research into ROS1-positive (ROS1+) cancer. The Initiative includes a group of over 150 patients in 19 countries; two patient-focused foundations, Bonnie J. Addario Lung Cancer Foundation (ALCF) and Addario Lung Cancer Medical Institute (ALCMI); academic cancer researchers; and industry. The Initiative includes more than twice the number of patients enrolled in any ROS1 clinical trial thus far.

How did this happen? Let’s return to the bar. Read More …

Six years with lung cancer: finding the meaning

I was eating a typical breakfast this morning, at our typical time, in the typical place, when I realized today was not typical.  Today is my six-year cancerversary.

Took me a moment to digest that thought.

Considering how shocked I was to hear my diagnosis of advanced lung cancer on May 10, 2011, I’m surprised this day seems typical.  Perhaps I shouldn’t be.  I’ve been living with No Evidence of Disease for 52 months and counting (thanks to a clinical trial, medical research, and other patients), and my scans only happen twice a year.  I might almost ignore the fact that I’m still a cancer patient in active treatment if not for the persistent side effects of previous treatment, daily medication ritual (seven different meds for cancer and side effects), and occasional bouts of pneumonia and coughing.

My time with lung cancer has been eased by the wonderful friends I’ve made along the way in the lung cancer community.  Some of my favorite experiences are watching them discover how to combine their passion for changing lung cancer outcomes with their unique skills and interests to meet a need.  Whatever skills they may value and enjoy, they can use them to find a purpose that gives meaning beyond a lung cancer diagnosis. Maybe it’s making memories with family and friends, creating a blog or piece of art, supporting newly-diagnosed patients and their caregivers in person or online, telling their lung cancer story in public, volunteering for a lung cancer advocacy organization, writing to lawmakers, conducting a fundraiser, or serving as a research patient advocate.  The needs in the lung cancer community are huge, and there are many ways to make a difference.  A caring act need not be global to be great. And the funny thing is, when you’re caring for others, one’s own issues seem smaller and more manageable.

Since my diagnosis, I’ve gone through this discovery process.  I found a way to combine skills I enjoy using (for me, it’s learning and communicating about science) with my passion to improve lung cancer outcomes for myself and others.  I’m making a difference in the world doing something that I love.

My evolution happened in phases, punctuated by seemingly random events that invited me into the next phase:

  1. Cancer Patient (May 2011)– I did what the doctor told me.
    (I moved to the next phase when my cancer became metastatic and I realized no one knew how to cure me. I had to be my own advocate.)
  2. Engaged Patient (October 2011)– I learned about my disease from online forums and other patients, actively discussed treatment options with my medical team, and shared my experience with other patients.
    (I moved to the next phase as I realized that sharing my lung cancer experiences was useful to others, and that perhaps I could do more.)
  3. Patient Advocate (April 2012)– I shared my story and patient perspective in increasingly more public venues, and began to work with advocacy groups.
    (I moved to the next phase as I realized I had accumulated more knowledge about treating lung cancer than some doctors I encountered.)
  4. Expert Patient (June 2013?)– I read new lung cancer research, discussed it with knowledgeable medical experts, and shared what I’d learned with other patients and carers.
    (I moved to the next phase as I discovered opportunities for sharing my story, knowledge and skills with healthcare, legislative, and policy making professionals through conferences, advocacy organizations, and online portals.)
  5. Patient Activist (October 2013)– I began actively pushing for changes in funding, public policy, and the healthcare system regarding lung cancer.
    (I moved to the next phase as I made contacts within the broader lung cancer community and saw opportunities for collaborations.)
  6. Research Partner and Activist (September 2015)–I now work with patients, caregivers, clinicians, researchers, pharma, advocacy groups and policy makers to improve lung cancer outcomes, and help other patients and caregivers in their explorations of advocacy.

As I’ve evolved, I’ve found purpose.  This purpose gives me focus, and helps me think myself as something more than just a lung cancer patient.  I get up most days knowing I have something useful to do, no matter how I feel physically.

I would not say cancer gifted me with this purpose.  The challenges of cancer only forced me to reassess what matters most by confronting me with a foreshortened lifespan and loss of abilities.  We all must deal with some level of adversity in life.  It’s how we handle that adversity that defines us.  I truly believe the Native American proverb:  “The soul would have no rainbow if the eyes had no tears.”

I’m not just surviving with cancer, I’m living.  I’m fulfilling a purpose, for as long as I can, however long I may have.

Here’s to finding the meaning.

#LCSM Chat Topic 5/4 — The PDQ on MTBs: Why are multidisciplinary tumor boards important in #lungcancer?

This is a reblog of a post I wrote on lcsmchat.com.

Lung cancer is a complicated disease.  Diagnosing and treating complex cases can require skills that cross a variety of medical specialties. Larger medical centers and hospitals may decide to discuss complex cases in tumor boards that include physicians that represent a variety of medical specialties.

Our May 4, 2017, #LCSM Chat (at 8pm Eastern, 5pm Pacific) will focus on defining what a multidisciplinary tumor board (MTB) does, who is involved, and why MTB are important in the treatment of lung cancer.

The National Cancer Institute defines a tumor board review as:

A treatment planning approach in which a number of doctors who are experts in different specialties (disciplines) review and discuss the medical condition and treatment options of a patient. In cancer treatment, a tumor board review may include that of a medical oncologist (who provides cancer treatment with drugs), a surgical oncologist (who provides cancer treatment with surgery), and a radiation oncologist (who provides cancer treatment with radiation). Also called multidisciplinary opinion.

Some of the medical doctors with specialized training that might participate in an MTB are:

  • Medical Oncologist: specializes in diagnosing cancer and treating it with medicines
  • Pathologist: specializes in identifying diseases and conditions by studying abnormal cells and tissues.
  • Pulmonologist: specializes in the diagnosis and treatment of pulmonary (lung) conditions and diseases.
  • Radiation Oncologist: specializes in treating cancer with ionizing radiation
  • Radiologist: specializes in diagnosing and treating diseases and injuries using medical imaging techniques, such as x-rays, computed tomography (CT), magnetic resonance imaging (MRI), nuclear medicine, and positron emission tomography (PET)
  • Thoracic surgeon:  specializes in the surgical diagnosis, staging and treatment of cancer in the thorax (chest)

Moderator @JFreemanDaily will lead our discussion using the following questions:

  • T1: What does a multidisciplinary tumor board (MTB) do? Why is it important in #lungcancer treatment?
  • T2: What types of #lungcancer cases can benefit by MTB review?
  • T3: Who should be involved in an MTB? What medical specialties are usually represented?
  • T4: How often does an MTB reach a consensus about diagnosis and treatment recommendations in #lungcancer?
  • T5: What can patients do if their hospital does not have an MTB? What is the role of telemedicine?

Please join us for this valuable discussion. If you’re new to tweet chats, this primer will help.

#LCSM Chat Topic 4/6: Who Needs Research Anyway: How Have You Been Impacted by Lung Cancer Research?

This post originally appeared on lcsmchat.com

 

#LCSM

microscope Our topic for the next #LCSM Chat on Thursday, April 6th at 5 PM Pacific/ 8 PM Eastern is “Who Needs Research Anyway: How Have You Been Impacted by Lung Cancer Research?” The moderator for this chat is Dr. David Tom Cooke (@DavidCookeMD)

In its most recent budget outline, the Trump administration is looking to propose an 18% cut to the National Institute of Health’s (NIH; @NIH) $31.7 billion budget (#trumpbudget).  In addition to this funding cut, the Trump administration proposes to 1) reorganize the current NIH institute structure and 2) fold the Agency for Healthcare Research and Quality (AHRQ; @AHRQNews) into the NIH, potentially diffusing it’s $334 million budget into other NIH institutes that perform similar quality investigative work.  AHRQ funds research that focuses on patient safety and quality improvement.  For example AHRQ has funded the development of lung cancer screening decision aides, and cancer specific…

View original post 355 more words

Did Lung Cancer Claim Your Loved One? Invest 20 Minutes to Help Researchers Find New Treatments!

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.

THAT’S IT!

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 jfreeman.wa@gmail.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.  

Life Between Scans: Call for Submissions

book-image-with-text

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

Submission Deadline

July 1, 2017

Submission Guidelines

  • 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 lifebetweenscans@gmail.com and include the following:

  1. Your personal essay (as an attachment)
  2. 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.

  3. 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:

Last update: 6-Mar-2017 16:00 Pacific Time

Collecting ROS1-Positive Cancer Tissue for Research

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.

making-cell-line.png

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.

making PDX.png

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.

Image Credits:

Figure 1:  Sara M. Nolte (used with permission of Signals)
Figure 2:  Jackson Laboratories (used with their permission)