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Opportunity to honor Dr D Ross Camidge

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Camidge and daughters

Dr. D Ross Camidge, MD, PhD, at the University of Colorado (CU) Cancer Center has provided me and many other lung cancer patients and caregivers with hope, support, effective clinical trials, remote second opinions and excellent cancer care. On April 5, Dr. Camidge’s work will be honored as he formally accepts the newly-created Joyce Zeff Endowed Chair in Lung Cancer Research.
   
A patient speaker (not me) will be talking at the event about Dr. Camidge’s impact on patients. We have a unique opportunity to show Dr Camidge–as well as the donor Ms. Zeff and CU–how many people he has helped in lung cancer patient communities .
   
If you are willing to have your Camidge experiences and kudos shared from the stage at the recognition ceremony, please post them below. I’ll make sure they get to the patient who will be speaking. If you want your name (real or online) associated with the quote, please say so in your post.
   
Thanks in advance for your contributions!
   
Janet Freeman-Daily (AKA Squanch)

Patient Advocate Scholarships Available to Attend #ASCO16

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Photo shows two mean chatting in the bustle of Annual Meeting.

If you are a cancer patient advocate interested in attending ASCO 2016, consider applying for the Conquer Cancer Foundation Patient Advocate Scholarship Program.

I have attended ASCO’s annual meeting in Chicago for the past two years.  While the five-day conference can be exhausting, it’s perhaps the best way to learn what treatments are up and coming for your type of cancer, become educated about the science behind research and clinical trials, and discover (and even chat with) the experts in your type of cancer.  It’s also a place to meet the people in your cancer community who you might only know online.

The ASCO (American Society of Clinical Oncology) 2016 Annual Meeting–held in Chicago June 3-7–will bring together over 30,000 cancer professionals from around the world for sessions about state-of-the-art treatment, results of clinical trials, as well as policy, advocacy, and survivorship issues.  You might strike up a conversation with a world-class expert in your type of cancer at a poster presentation or even walking between sessions.  The exhibit hall is a great place to learn about new biotech technologies (such as genomic testing panels and liquid biopsies) as well as what’s in each pharmaceutical company’s drug pipeline.

The Patient Advocate Scholarships are intended for expenses related to air or train travel, lodging, and meeting registration for advocates traveling from outside the Chicago area to attend the meeting (which can add up to $2K US or more).  Eligibility is based primarily on financial need as well as advocacy experience and current activities. Applicants will need to demonstrate why they would not be able to afford to attend the ASCO Annual Meeting without a scholarship award, and are encouraged to provide a compelling reason why their attendance at the meeting is vital to their advocacy role(s).

Although the application period for the doesn’t open until April 4, get an early start now on preparing your application –the application period will only open for three days!

#LCSM Chat topic 2/25: Communicating patient goals and values for #lungcancer treatment

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This is reblogged with permission from the LCSM Chat website.

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The best lung cancer care considers the patient’s goals and values when choosing a treatment. However, identifying and communicating those goals is not always a straightforward process for either the care provider or the patient.  

This week’s #LCSM Chat explores the process of communicating patient goals and values. Care providers need to know how to elicit them. Patients (even those who want to leave treatment decisions entirely to their doctors) must be able to identify and express them, and, if need be, initiate a conversation about them.  

Choosing the right treatment and care for a lung cancer patient is a matter of weighing risks of side effects versus evidence that the treatment has a good chance of success. Physical side effects can run the gamut from mildly annoying tummy upset to life-threatening organ failure. Yet sometimes a drug that causes severe side effects might result in cure or prolonged No Evidence of Disease. While the doctor or other care provider can learn about the risks and benefits for specific treatments from medical literature, only the patient knows what risks they are willing to accept to achieve their individual treatment goals. 

Willingness to tolerate risks varies from patient to patient. Some patients (perhaps those with small children) might favor an aggressive new treatment with the goal of living as long as possible regardless of side effects. Others (perhaps those who have additional health problems that would be dangerously aggravated by cancer treatment) may choose to forego active treatment and aim to be comfortable enough to attend a dear friend’s wedding in six months.  

In addition to physical side effects, patients also have financial, logistic, cultural and family concerns. Although it would be wonderful if all cancer patients had sufficient resources to access the most effective treatment options and the best care, we know this is not the case. Some patients must make treatment choices based on their ability to pay or to travel to a treatment site–a cancer center may not covered by the patient’s insurance, or may be hundreds of miles away. Unfortunately, bankruptcy is not a rare side effect of cancer treatment.  

The discussion of patient goals and values must continue throughout a patient’s lung cancer treatment, because patient preferences may change over time. An early stage patient might choose to be aggressive in their first-line treatment in hopes of a cure. Yet that same patient may find that after their cancer has become metastatic and they have had three different aggressive cancer treatments, they hesitate to try another treatment likely to have severe side effects. 

Some patients are comfortable trusting their doctors to determine whether the potential benefits of a treatment are worth the potential side effects, while other patients prefer to participate in shared decision making. Both approaches are valid choices, but in both cases, one would hope that one’s doctors would consider each patient’s goals and values when weighing treatment options.  

However, the process each care provider uses to determine patient goals and values is far from standardized. It is not a skill that has been (or is currently) taught in most medical schools. Sometimes the process doesn’t happen. 

During our chat on February 25 at 8 PM Eastern (5 PM Pacific), moderator Janet Freeman-Daily (@JFreemanDaily) will lead the discussion about communicating patient goals & values for lung cancer treatment using these topic questions: 

  • T1: What are examples of patient goals & values that would be helpful in discussions of #cancer treatment? #lcsm
  • T2: How can we encourage patients (including those who want to leave decisions to docs) to think about treatment goals & values? #lcsm
  • T3: How might care providers solicit patients goals & values for #lungcancer treatment? Are any topics (e.g., cost) off limits? #lcsm
  • T4: How might patients initiate the discussion of their goals and values if their #lungcancer care provider doesn’t ask? #lcsm
  • T5: How can we encourage discussions of goals and values between #lungcancer care providers and patients? #lcsm

We hope you will join the 2/25 chat. Remember to add the hashtag #LCSM to your tweets during the chat so other chat participants can see them. For more info, check out how to participate in #LCSM Chat. If you can’t join us, please leave your comments below.   

References: 

“Patient-centered: providing care that is respectful of and responsive to in­dividual patient preferences, needs, and values, and ensuring that patient values guide all clinical decisions.”  Institute of Medicine, CROSSING THE QUALITY CHASM: A NEW HEALTH SYSTEM FOR THE 21ST CENTURY, p. 3. 

“Patient-Centered Communication and Shared Decision Making,” National Academies Committee on Improving the Quality of Cancer Care, Delivering High-Quality Cancer Care, Chapter 3.

Help lung cancer doctors learn about patient decision making

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decision making

If you are patient with lung cancer, or a caregiver of a patient with lung cancer, please consider completing this 15-minute survey. It was created by Dr. Laurie Gaspar, a radiation oncologist at the University of Colorado, to gather information about:

– How prepared patients are for making difficult decisions?
– How involved patients are in the decision process?
– What would help to improve the decision making process?

The study results will help doctors, patients, and caregivers understand how the process of making decisions about lung cancer treatment and care might improved.

The survey is here:

Looking forward: 2016 AACR Annual Meeting and the Scientist-Survivor Program

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Microscope

I recently learned I was selected to participate in the American Association of Cancer Research (AACR) 2016 Scientist-Survivor Program!  I’m excited to be attending the AACR Annual Meeting this April in New Orleans.  Thanks to the Bonnie J. Addario Lung Cancer Foundation for sponsoring my application.
I’m looking forward to networking with researchers as well as meeting advocates for other types of cancers to discuss their work.  I’ll also be presenting a research poster on Lung Cancer Social Media (#LCSM) on Twitter, which offer a unique opportunity to connect with all types of stakeholders in the lung cancer community — patients, caregivers, healthcare providers, researchers, hospitals, pharmaceutical companies, advocacy groups, and insurance payers.  Afterwards I plan to blog about the experience and share some of the exciting research presented at the meeting.
After the meeting, I’m going to have a few days vacation to enjoy New Orleans (which I’ve never visited).  I’ll then take The City of New Orleans Amtrak route to Chicago, followed by another train to Boston.  I’ll arrive just in time to present at another conference (GET 2016) at Harvard the next day! I had originally planned to take the Sunset Limited from New Orleans to LA, but after I was invited to GET my travel coordinator (e.g., hubby Gerry) could not find any place where I could disembark along the way and fly to Boston in time for the conference.  After GET, I’ll take a train to Washington DC, where I’ll be a speaker at LUNGevity’s National HOPE Summit.  Whew!
Glad I have willing housesitters who love (and are loved by) the cats.

How do you see a good death?

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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.

2015 in review

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The WordPress.com stats helper monkeys prepared a 2015 annual report for this blog.

Here’s an excerpt:

The concert hall at the Sydney Opera House holds 2,700 people. This blog was viewed about 60,000 times in 2015. If it were a concert at Sydney Opera House, it would take about 22 sold-out performances for that many people to see it.

Click here to see the complete report.

Gratitude, Year Four

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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

Guest blog: Dear lung cancer patient who didn’t smoke

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In February of 2014, I wrote a blog post titled “Dear lung cancer patient who smoked.”  Today that post received a comment from my friend and fellow lung cancer patient advocate K ‘Karen’ Latzka.  Her insight deserves a blog post of its own.  Reposted with author’s permission.

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Dear lung cancer patient who didn’t smoke,

I was a pre-teen when my older sister invited me to smoke a cigarette with her. I worshiped her, and was excited she included me. Smoking united us. By sixteen, I had a full-blown addiction that I couldn’t break. But the day before my dad’s birthday, when I was 35 years old, I smoked my last cigarette.

For a decade, people celebrated this accomplishment with me. Relatives, friends and strangers asked me for tips to help them quit. More important, I forgave myself for poisoning my body for so long and committed to a healthy lifestyle.
At age 46, I was diagnosed with lung cancer. Since that day, every time someone hears of my diagnosis for the first time, they ask “Did you smoke?” and, unlike my never-smoker brothers and sisters, I respond yes. Yes, but I quit a decade ago. Yes, but I know lots of people with lung cancer who never smoked. Yes, but I don’t deserve to die!

I remind myself that the question usually is not intended to judge me, but rather the inquisitor is gauging their own risk. Smokers and ex-smokers usually follow-up with questions about my smoking history, perhaps hoping my history was worse than theirs. Never-smokers usually follow-up with questions about a loved-one’s smoking history, or about second-hand smoke. I patiently respond with the things I know, followed by “anyone with lungs can get lung cancer.” And in the end, many walk away still thinking that I deserve what I got, most without showing a bit of compassion. And I forgive myself once again, and tuck away the guilt and shame until the next round.

It’s exhausting. It’s hard enough to fight the guilt and shame we put ourselves through after diagnosis, but to be reminded of it again and again by strangers, while we’re literally fighting for our lives is something most of us don’t have the will or the strength to tolerate. Which is why, when I look at my ever-expanding list of lung cancer friends who are active advocates like me, I don’t see many who have a smoking history.

So you advocate for all of us. The rise in lung cancer among never-smokers has caused an explosion in lung cancer research (relatively speaking). We’re finally seeing this research extend the lives of lung cancer patients! And these patients are actively advocating for more research funding, better education, and better screening methods.

As for this former-smoker, I will continue to fight lung cancer stigma by your side, and to do everything in my power to improve survival outcomes, no matter how exhausting it is.

With much love,

A lung cancer patient who smoked

When your pharmacy plays favorites with cancer

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Last week I refilled my prescription for warfarin, a blood thinner I take for my cancer-related pulmonary embolism (such blood clots that are not uncommon in cancer patients).  The Fred Meyer pharmacy did their usual efficient job and delivered my medication promptly.  It looked like this:

pink ribbon pill bottle

I think it’s wonderful when corporations support cancer research and cancer patients. Kroger (Fred Meyer’s parent company) has a large breast cancer awareness campaign featuring Kroger employees who have or had the disease, and I’m sure some breast cancer patients who received this pill bottle cap felt a surge of hope.

“Hope” is not the emotion I felt when I saw this bottle.

I felt stigmatized. Ignored. Devalued. And these feeling were triggered by an organizaion supposedly aiming to make me feel BETTER.

I have lung cancer, the biggest cancer killer, a disease that kills twice as many women as breast cancer  … READ MORE

 

Image credit:  Creative Commons License
Pink-ribbon pill bottle cap by Janet Freeman-Daily is licensed under a Creative Commons Attribution-ShareAlike 4.0 International License.