An opportunity to support patient-driven ROS1 cancer research

I hope you’ll support me and the Global ROS1 Initiative as we strive to accelerate research, find better treatments and hopefully cure ROS1 positive (ROS1+) cancer — which I have. Here’s a National Cancer Institute blog about the Initiative. This project is very dear to me.

If you’ve been meaning to contribute, or you have friends or family you’ve been meaning to ask to donate, do it today, or sometime before the end of the year!  The recently-signed US tax law revisions may affect whether you can claim a tax deduction for your charitable contributions after January 1, 2018.

GO TO MY FUNDRAISER BY CLICKING HERE:
Janet Freeman-Daily’s ROS1 Research Fundraiser

Thanks for supporting ROS1+ cancer research—you could help save someone’s life someday. For those who want more detail about the project and fundraiser, read on!

Why research ROS1 Cancer?

My type of cancer is driven by an alteration in the ROS1 gene. Medical research has made it possible for me to live well with aggressive, metastatic ROS1+ lung cancer since 2011. However, ROS1+ cancer is uncommon (only 1%-2% of lung and other cancers) and not well understood. Only one approved ROS1-targeted drug exists, and patients eventually develop resistance to it. Little is known about how this disease begins, progresses and develops resistance to treatment.

Is my donation tax-deductible?

This fundraiser directs funds to the Bonnie J. Addario Lung Cancer Foundation (ALCF), a 501(c)(3) nonprofit (view their Guidestar page); monies are placed in an ALCF account designated for our ROS1 project. Donations  are tax deductible under US tax laws.

What is the Global ROS1 Initiative?

I helped to create the Global ROS1 Initiative, a unique collaboration between ROS1+ patients, caregivers, researchers, clinicians, and industry. This is the first-ever effort initiated by patients to focus on cancer driven by a single genomic alteration anywhere in the body. We are initially funding projects in the US (takes time to learn about international research collaboration), but our patient group is global, with patients in 19 countries to date.

How did the Global ROS1 Initiative get started?

Who are the Global ROS1 Initiative partners?

What research will the Global ROS1 Initiative fund?

Funds in the ROS1-designated account will be distributed by a panel of Global ROS1 Initiative representatives (including patients) to our projects. We are funding two projects at present:

  • A survey conducted through Stanford University, which collects personal and health history data on ROS1ders. Researchers will study the data to look for possible causes of ROS1+ cancer, and evaluate effectiveness and sequence of treatment options.
  • The ROS1 Cancer Model project, which is creating new models of ROS1+ cancer for drug development and research into our disease. In early 2017, only a few ROS1+ models existed, and they did not represent all the dozens of variations of ROS1+ cancer. In this project, we ROS1ders agree to donate our cancer tumor cells collected in the normal course of care to create cell lines and mouse models that researchers can use to study our disease.

How will the Global ROS1 Initiative accelerate research?

As part of our patient-driven approach, we aim to make our data and models widely available to the cancer research community instead of holding it in silos at individual institutions.  We will be creating a biorepository of our specimens with annotated patient data, including making use of patient registries (like the Lung Cancer Registry) that share de-identified data will validated researchers. The cancer models we create will be distributed at minimal cost to researchers.

The ROS1ders also help spread vetted information about ROS1+ cancers to patients, caregivers, and the public.  We donate our time to maintain and write content for the ros1cancer.com website  which shares up-to-date information about ROS1+ cancer, names of ROS1+ experts, known treatments and their approval status globally, and available clinical trials focused on ROS1+ cancers.  We also administer a private Facebook group in which ROS1+ patients and caregivers share their experiences, news about our cancer, and tips for living with our disease (more info on joining this group is here).

Health risks of open enrollment

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.

Whew!

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.

Editing in the age of precision medicine

I want a plug-in for Siri on my iPhone that recognizes the names of all cancer drugs. I’m getting really tired of correcting “and tractor new” (entrectinib), “croissant live” (crizotinib), and “a lot of them” (lorlatinib). You should see what Siri gives me when my chemobrain is too tired pronounce the longer ones correctly! I still can’t wrap my tongue around the generic name for Tecentriq. 

Feel free to share your Siri/Cortana/Dragon medical transcription snafus in the comments.

The start of something big …

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!

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 …

#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.

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.