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.  

Dear Congress: Please Consider Lifetime Caps and Pre-Existing Conditions Carefully

Dear Congress:
Some voters say they don’t want the government or insurance companies to spend THEIR money on other people’s healthcare.  They think repealing the Affordable Care Act will fix all their healthcare problems.
They probably are not aware that “other people” will likely include them or someone they love at some point.  All of us risk the ravages of accidents, illness, and age, and 39% of US citizens will get cancer in their lifetimes (per the NCI’s current SEER data).
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Before the ACA was implemented, cancer was a “pre-existing” condition that prevented anyone who’d had it from obtaining health insurance, and most healthcare plans had “lifetime caps” on how much they would spend on individuals.  My exceptionally great employer-provided health plan’s lifetime cap was $250,000 before the ACA.
My insurance company was billed more than $250,000 during my very first year of advanced lung cancer (I was diagnosed May 2011).
If the lifetime cap and pre-existing conditions clauses were in place last year, I would have lost my health insurance, and likely would have no option to buy more. I would have been responsible for paying about $98,000 in 2016 alone in billed healthcare services and treatments (assuming I could still get my targeted therapy cancer drug free through a clinical trial). That’s despite not having other major health issues last year, like hospitalization for pneumonia or cancer treatment side effects.

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).

One of those people will be your constituent … or even someone you love.
Please consider your healthcare options carefully.  The life you save may be your own.  A six-figure salary is peanuts compared to cancer treatment.

Your Life, Your Choices — A Conversation

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If you live in the South Puget Sound area of Washington State, and are interested in starting a conversation with family members about what’s important to you when you think about the end of life (which comes to all of us, though we know not when), please join us on Sunday, October 9, 2016, at Calvary Lutheran Church in Federal Way, Washington, at 2 PM for a free two-hour workshop.  Ann Hagensen, RN, FABC, (Virginia Mason Medical Center) will be presenting materials based in part on The Conversation Project. She will be joined by Karen Freeman Worstell (transformational grief coach and founder of NarrowBridge Solutions), Pastor Lori Cornell (of Calvary Lutheran Church), and myself.

This is a topic of vital interest to me, and not just because I have metastatic cancer.  I have extensive experience exercising durable power of attorney and navigating communications between family members over estate and end-of-life choices. I know friends who had serious accidents or died unexpectedly without having these conversations with their loved ones, and as a result their family members were completely unprepared for the decisions they faced. Because this is so important to me, I serve as an advocate on regional and statewide initiatives to identify and honor patient goals of care and end-of-life wishes.

I hope you’ll join us!

Cancer Choices: Quality of Life versus Quantity

Life has an odd way of reinforcing its lessons.

Due to my own lung cancer journey, I’ve learned a lot about the uncertainties of cancer diagnostic procedures and treatment. I’ve learned that cancer is sneaky; sometimes it doesn’t announce itself until it is in advanced stages, doesn’t behave as expected, doesn’t present a clear diagnosis with a “best” treatment option. And I’ve learned the value of making treatment choices that allow the patient to do what matters most to them, rather than prolonging life at any cost. For many patients, qualify of life is more important than quantity of days.

Recently, life gave me the opportunity to apply my hard-won wisdom to my beloved 14-year-old cat, General Nuisance.

General is a fluffy, snuggly ball of love. He has been MY cat since … Read more

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How do you see a good death?

An emergency room physician has written a great piece comparing what dying is like today compared to a century ago.  The experience today isn’t necessarily better. Everyone needs to read I Know You Love Me — Now Let Me Die by .

The majority of humans will experience a gradual decline and loss of function in their lives before they die. Everyone–healthy or otherwise–needs to talk with loved ones NOW about what quality of life means, and how they would prefer to spend their last days. Because we WILL die.

Unfortunately, one can have all the Advance Directive paperwork in place and still have one’s wishes overridden by the hospital if the papers are not in the right hands at the right time. Also, Advanced Directives cannot cover every possibility–for instance, do you want your pneumonia treated with antibiotics if you’re already cognitively impaired by dementia? That’s why it’s so important to make sure loved ones know your wishes and will ensure they are carried out to the best of their ability.

Visit The Conversation Project to get started.

Gratitude, Year Four

What does it mean to be thankful when you have metastatic lung cancer?

Four years ago on Thanksgiving, my extended family gathered for a somewhat somber meal. I had been diagnosed with advanced lung cancer the previous May, and despite aggressive treatment, the cancer had spread further. Although the tumors in my left lung and between my lungs were shrinking due to chemo and radiation, the new mass at the base of my neck was starting to threaten my carotid artery. I could see it growing week by week. I felt flashes of hope mingled with panic, anger and regret. Lung cancer is the biggest cancer killer for both men and women and the survival rate for metastatic disease is less than 5 percent. My presence at future family gatherings was far from assured.

This year, I am immensely grateful to have seen three more Thanksgivings and to have no evidence of disease for three years and counting.

I’m grateful for the support I’ve received from so many throughout my cancer journey. I’m grateful for compassionate … READ MORE

“Moving On” — a yarn about knowing when to let go

The short film “Moving On” touched me both as a daughter who made care choices for dying parents, and as a metastatic lung cancer patient who is likely facing death sooner rather than later. It’s especially poignant since I spent yesterday in a workshop about palliative care and end of life. I needed several tissues after the subtle headshake, yet the tears were cathartic.

I pray all of us and our loved ones will  make the most of whatever time we have together, and know when it’s time to let go of the yarn — whether for ourselves or for those in our care.

Please remember to touch and be touched by your loved ones before the yarn is all gone.

Thanks to Lucy Goddard Kalanithi for sharing the link.