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Three pavement dives make a trend

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falling

Yesterday morning I repeated the pavement diving stunt I pulled in Chicago last May that broke my left shoulder: I caught my toe, staggered a few steps, and played Superman on the hard deck.  My official “Klutz” merit badge is due to arrive any day now.

This time I had the foresight to fall just as I entered the University of Colorado Cancer Center for my monthly labs.  The staffers at the information desk rated it a 5 out of 10 for style, and a flurry of doctors and nurses descended immediately.  The nurse who drew my labs insisted on walking me to the ER for a quick x-ray, which showed I had not reinjured my left shoulder (**whew**).  I was discharged from the ER just in time to drive to the airport for my flight home. I still have full range of motion in both arms, but movement is a bit less comfortable. Since I still can’t take anti-inflammatory drugs like NSAIDs (due to blood thinners), I might choose to get that second cortisone shot I’ve been avoiding, unless icing can adequately soothe my angry tendons (good name for a rock band, isn’t it?).

My legs have seemed weaker recently.  I’ve been traveling a lot lately, and therefore walking and climbing stairs more than usual, which might be at least partly responsible.  Also, my feet are getting more vocal in recent months about their objections to past chemotherapy — a paper published in January found peripheral neuropathy greatly increases the risk of falls among cancer survivors  (to which I reply … ya think?).

This is my third fall in nine months, which set off alarms for my docs at my check-in today.  They say three falls  in a year counts as a “trend.”  I’ve been referred to physical therapy for an evaluation of leg muscle strength, range of motion, and other possible mechanical reasons for my falls.  If this doesn’t reveal anything useful, my next stop is a neurologist. I had another clear brain MRI in January, so brain mets are unlikely.

A potential neurological issue seems relatively trivial compared to my metastatic cancer, but it does mean more medical appointments when I’d rather be writing.  When will I learn to be a boring vanilla cancer patient?

 

#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.

Please comment by 26-Feb-16: Bree Collaborative Oncology Workgroup recommendations

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The Bree Collaborative’s Oncology Workgroup (I am their patient advocate) is seeking feedback on our recommendations regarding (1) advanced imaging for early stage breast and prostate cancers, and (2) palliative care during anti-cancer therapy.  Hope you’ll read the recommendations and take the survey! Feedback is due by February 26. 

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Your feedback is requested on the Bree Collaborative’s latest draft report and recommendations for Oncology Care.

Please complete all comments regarding the report using this link to Surveymonkey. The survey should take 5-10 minutes to complete. Comments must be received by 5pm on Friday, February 26th.      

Summary of Recommendations

Cost and quality of cancer care vary greatly in the United States. Significant variation in diagnosis, treatment, and supportive care for patients promotes poor outcomes and excessive cost for patients and the health care system.  While evidence-based guidelines exist, adoption has been inconsistent. Our report has two primary focus areas:

  1. That all clinics follow the American Society of Clinical Oncology’s Choosing Wisely recommendations:
    • Do not use PET [positron emission tomography], CT [computed tomography] and radionuclide bone scans in the staging of early prostate cancer at low risk of spreading.
    • Do not use PET, CT, and radionuclide bone scans in the staging of early breast cancer that is at low risk of spreading.
  2. That palliative care be offered alongside active anti-cancer care, as needed. Oncology care should be aligned with a patient’s individual goals and values and follow ASCO’s position statement of key elements for individualized cancer care. Patients should be apprised of the harms, benefits, evidence, and potential impact of chemotherapy and radiation at all stages in their illness trajectory.

About This Public Comment Process

  • The Oncology Care workgroup reviews and uses public comments to develop the report submitted to the Bree Collaborative for adoption.
  • The final report is submitted to the Washington State Health Care Authority (HCA). This state agency oversees Washington’s largest health care purchasers – Medicaid and the Public Employees Benefits Board Program (PEB).
  • Collaborative recommendations guide state purchasing policies for these programs.
  • The Collaborative also works to promote implementation of the recommendations across Washington State

For more information or to give additional feedback, please contact Ginny Weir, Program Director of the Bree Collaborative at GWeir@qualityhealth.org or (206) 204-7377 or visit www.breecollaborative.org

Thank you in advance for your participation in this effort to improve health care quality, outcomes, and affordability in Washington State.

Ginny Weir, MPH
Program Director, Bree Collaborative
Foundation for Health Care Quality
705 Second Avenue, Suite 410 | Seattle, WA 98104
GWeir@qualityhealth.org | (206) 204-7377
www.breecollaborative.org

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.

Take It Personally: How decoding your genes might unlock the future of health care

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Denver’s “5280” magazine just published a terrific article on precision medicine called  Take It Personally: How decoding your genes might unlock the future of health care by Julie Dugdale (click on the link to read it). It’s a top-level summary of the benefits and issues that arise from using genomic data in medicine.  One of the main players in the article is the University of Colorado School of Medicine, and some of the providers I work with at CU are quoted (Dr. Dara Aisner and Dr. Robert Doebele).

P.S.  I play a bit role in the article (as a lung cancer case study)

 

 

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.

Guest Blog by Dann Wonser: Do I stay in my clinical trial?

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My friend and fellow lung cancer patient Dann Wonser recently blogged an update about his treatment status.  In it, he shared how he made his decision about whether to stay in his targeted therapy clinical trial after the drug received FDA approval.  It’s a worthwhile discussion–an increasing number of cancer patients will face such decisions as more targeted therapies are approved–so I asked his permission to share it on my blog.  The entire text is listed below.

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NEW SCAN RESULTS + CLINICAL TRIAL DECISION

published December 17, 2015 by 

Friends and Family,

After our usual pre-scan hyper-sensitivity to every indigestion burp, cough, or body ache, I kicked my anxiety into overdrive by getting a cold/flu. It gave me all the symptoms of lung cancer gone rampant: Difficulty breathing, heavy chest, cough, feeling not so great. Then we flew to San Diego, where Dr. Patel gave us the good news: No new growth! We’re celebrating!!! We are now a couple of months past the average time that Tagrisso usually remains effective, which leaves me even more grateful. I have another six weeks of sweet life, and have bought another six weeks of time for the next new drugs to be developed before I need them. Clinical researchers out there, you are my heroes! Keep up the great work!

A couple weeks ago I asked what you would do if you had the choice of ending the clinical trial, but continuing to get the same medication in my home town. I thought I had probably covered the major topics pretty well, but found that there was much more to consider after listening to your thoughts. Thank you for contacting me through every means imaginable to share your thoughtful contributions! If you just want to know what I decided, skip straight to the bottom of this email. If all the facets of this decision fascinated you as much as they have me, keep reading and I’ll share what I learned from you.

First, Tagrisso is so new that the insurance company may not cover it, or may not have a contract with a pharmacy that carries it. They may also have a much higher co-pay for a new drug. This could critical, since the reported cost is $425 per pill. That’s right: $425 per day. I am very fortunate to have an insurance plan that has a maximum out-of-pocket expense. I usually meet that annual maximum out-of-pocket around January 7th, 🙂 and then I’m covered 100% for the year.

But what about those who do not have such great coverage? Fortunately, Astra Zeneca has a patient assistance program. See  http://www.astrazeneca-us.com/medicines/help-affording-your-medicines/ if you are in this boat. I believe other drug companies have similar programs… Worth checking out.

Several people told me they would get out of the clinical trial as soon as possible, to cut radiation exposure in half, by having half as many CT scans. Ashley, my clinical trial coordinator, petitioned the study sponsor to decrease the scan frequency for everyone. I’m impressed, and very grateful! Thank you, Ashley! Hey, I know it’s a long shot, but I appreciate the advocacy!

A friend and fellow blogger, Linnea Olson, actually contacted her study sponsor herself. Way to be your own advocate, Linnea!

But how much radiation is too much? Fortunately, I know someone who has spent years measuring radiation levels in workers at a nuclear-related facility. She can’t give an accurate response without knowing the radiation dose levels of the CT scans, but her best estimate is that the dose is still less than the daily level of radiation considered safe for workers in the nuclear industry. I don’t know whether that makes me feel relieved, or worried for the nuclear workers. All the same, it would be helpful to get dose info from a radiologist who does CT scans. I’ll work on it.

Several people mentioned the advantages of staying close to clinical researchers who are on the cutting edge of treatment. How could I replace that?

The length of the clinical trial was questioned. Dr. Patel has no idea how much longer the trial will continue. However, I have the choice of exiting the trial at any point.

Several of you mentioned the importance of contributing to research that affects the lives of so many. More data will help guide more research, and benefit more people.

The travel expense is not the biggest issue, but one that seemed reasonable for the drug company to cover at this point. The cost is roughly the equivalent to the price of one pill ($425) every six weeks.  UCSD told me that they never go back to the sponsor to ask for travel assistance. So…. I bypassed the system! I have my own Astra Zeneca connections, so I made my own request. We all have to be our own advocates.

I asked Genevieve how this impacts her, since she makes every trip with me. She dismissed the question as trivial and irrelevant. That says a lot about love, doesn’t it? She’s a keeper!

One friend, Joe, had a more noble take. He said that it’s good to stay with the girl that brought you to the dance, and make sure she gets home safe. In other words, since this clinical trial saved my life, perhaps loyalty should be a consideration.

Thank you  all for making me consider so much more, and in so much more depth. It makes me feel more comfortable with my decision… to stay with the clinical trial. You helped me crystalize that my biggest concern was the radiation, which I feel a little better about now. You also helped me to decide just how important it is to contribute to the research, and to realize that the most important factor for me is sticking close to Dr. Sandip Patel. He is the most cutting-edge oncologist that I know about for my situation, and I have direct access to him. That is irreplaceable.

Wishing you happy holidays, and decisions you can live with.

Love,

Dann

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