Tangled Thoughts from a Restless Mind (a reblog)

Joining an online community of lung cancer patients and caregivers is wonderfully supportive, informative, even lifesaving.  But members must  pay dues by weathering frequent losses of friends.

Saturday night, March 29,  2014, another young stage 4 lung cancer patient died of her disease.  Jessica Rice, age 33, who tweeted as @stage4blog and blogged at stage iv.wordpress.com, gave hope and inspiration to many lung cancer survivors before succumbing to multiple brain metastases.

Sometimes it’s too much.  Tori Tomalia (@lil_lytnin, who blogs at A Lil Lytnin’ Around the World) reflected on this in her blog yesterday.  She voiced what many of us feel when we learn of another death in the lung cancer community.  She said it so well, I asked to reblog her post from Sunday, March 30. Here is her blog entry, reposted with permission.


Tangled Thoughts from a Restless Mind

by Tori Tomalia

“Enjoy yourself, it’s later than you think.”

I’m tired of being reminded of the fleeting nature of our time on Earth.
I’m tired of being aware that this can all end so quickly.
I’m tired of knowing how important it is to stop and smell the roses, that the frost is coming soon.
I’m tired of happy moments carrying the pang of realization that this can be gone in the blink of an eye.

Understanding the importance of living for today is a terribly heavy weight to carry.

“when Time and Life shook hands and said goodbye.”

I’m so tired of people in my community dying.

Perspective Check

Signs of spring continue to accumulate in Western Washington. Fruit trees bloom. Rain falls — this March is our wettest month EVER in Washington. And, as occasionally happens after heavy rains, landslides occur.

A week ago, three million dump truck loads of liquified mountain descended onto the small community of Oso, Washington. In some parts of the one-square-mile slide zone, mud is ten to twelve feet deep.

While at times it’s tough for me to live from scan to scan, I imagine it’s much harder to have one’s home, family, and community wiped out in mere seconds. Recovery efforts continue, but the odds of finding people alive at this point are slim. One young woman lost both her mother and her 4-month-old daughter in the disaster. Others are uncertain if their loved ones were in the slide zone, perhaps on the now-buried highway that passed through the town.

Yet survivors still struggle toward the light, much as blades of grass in our so-called lawn fight to emerge from under a smothering expanse of moss each spring.

There are worse things than cancer. Even so, life goes on.

Clinical Trial Check-In Number 18

Denver gifted me with a warm, bright day today — clear skies, 60 degrees, a hint of breeze — perfect for sitting on a sun-drenched bench and basking in the glow of another clean scan. I’m still No Evidence of Disease (NED) status. Woohoo!

You’d think I would have had enough radiation for one week, but that spring sunshine was simply irresistible after such a long winter.

I had a PET-CT scan as well as a brain MRI and lab work yesterday, and had my once-every-eight-weeks visit with my clinical trial oncologist Dr. Camidge at University of Colorado this afternoon. Today I started cycle 19 on the drug Xalkori. Each cycle is 4 weeks, so I’ve been on this drug trial for 76 weeks now, which is almost 17 months.

I’ve been NED for nearly 15 months on Xalkori. According to interim results published about this clinical trial last year, only myself and one other person achieved NED on this trial. It’s possible I don’t have many cancer cells available to mutate and develop resistance to the drug. My particular flavor of lung cancer (ROS1-driven NSCLC) hasn’t been studied very long — the first article about it was published in January 2012 — so little data exists to know what will happen in my case. Xalkori may continue to suppress my cancer for years. It’s cool to hear my doctors say they have no idea of how long I might have left, and know they’re being honest with me. I’m an outlier for those gloomy stage IV lung cancer statistics.

I feel so fortunate to be blessed with more time to enjoy family and the miracle of life. I aim to make good use of it.

Speaking of making good use of my time … should I mention I have to work on tax returns after I fly home? Nah.

Trial Travel Notes to Self (March 2014 edition)

I still travel to Denver every eight weeks for my clinical trial appointment. On each visit, I refine my travel skills. Here’s what I learned (or relearned) this time:

1. Denver employs hidden moisture vacuums in airport jetways.

2. Dodge Avengers are built for people shorter than me.

3. Weather Channel three-day forecasts for Denver aren’t sufficiently fine tuned to indicate whether it will snow when I leave the hotel.

4. Hospital cafeteria hours don’t necessarily mesh with radiology schedules.

5. No matter how many times I push the button, MY car key will not unlock a rental car.

6. To avoid repeating #5, review #4 and pack a snack.

7. If one must sleep in the MRI machine, don’t snore loud enough to jerk awake.

8. While waiting to get scan results, plan something distractingly fun. Trying to verify tomorrow’s weather report on clinic wifi does not qualify.

9. No matter how calm and relaxed I may be, and what arsenal of sleep medicines I may possess, I won’t fall asleep at a reasonable hour the night before a scan.

Mantras of the Cancer Revolution

Here’s an inspiring and hopeful talk about finding cancer treatments.

Targeted therapies are revolutionizing the way cancer is treated. One of the leaders of this revolution is Dr. Ross Camidge, Director, Thoracic Oncology Clinical Program at University of Colorado Hospital. He recently gave a talk to Colorado State University’s biotech students, using examples of his lung cancer research to inspire the students to careers in biomedical science.

CSU Career Center’s BioTech Connect: Ross Camidge

RECAP — Mantras of the Cancer Revolution:

The revolution in cancer treatment happened when the effectiveness of crizotinib for ALK+ lung cancer was discovered. “The whole drug development industry in cancer changed overnight. It wasn’t about finding one drug that was going to work a little bit in everybody. It was about findiing a drug that worked amazingly well in a small number of people.”

Camidge stated the following “mantras of the cancer revolution”:

1. One size does not fit all
(personalize cancer treatment based on each individual’s cancer)

2. Don’t walk away from a good thing
(if the targeted drug is working, stay on it as long as possible)

3. If the cancer moves, follow it
(if the cancer moves into brain, make a drug to treat the brain)

4. Question everything

Disclosure: Dr. Camidge is my clinical trial oncologist. I feel incredibly blessed to have him leading my lung cancer team.

#LCSM Chat Preview March 13 – Stress, Anxiety and Lung Cancer: How Do You Cope?

The post below is reblogged with permission from the LCSM website.

Patients and caregivers experience considerable stress and anxiety as a result of lung cancer diagnosis and treatment. How do you handle stress? Is it possible to prevent stress or is it ‘just a part of life’?  Some individuals handle stress and anxiety better than others. We want to explore this topic in more detail during this week’s #LCSM chat.

T1: What kinds of stress do lung cancer patients experience due to their cancer diagnosis or treatment?

 T2: What can healthcare providers do to help reduce stress for a lung cancer patient or caregiver?

 T3: What can patients and caregivers do to help reduce stress for themselves and each other?

Our guest for this chat will be Dr. Niki Barr, (@nikibarrphd), a Dallas, Texas, based psychotherapist who specializes in working with cancer patients and their families and teaches them how to “move through the continual challenges of cancer with emotional wellbeing”.

We know this is a very sensitive subject and we don’t expect anyone to share his or her most personal stories in such an open forum.  So we are offering an opportunity for you to submit questions to Dr. Barr in a confidential setting.  If you have a question you’d like answered or addressed during the chat, please email us at lcsmchat@gmail.com.  Only those of us associated with #LCSM Chat will be privy to the contents of the email. We will then forward the questions to Dr. Barr for possible use during the chat. Please note that if we use your question, we won’t use your name. 

 Please join us Thursday, March 13, 7 CT/8 ET, for an in-depth conversation about stress and anxiety associated with a lung cancer diagnosis. 

Thoughts or questions? Email us directly at lcsmchat@gmail.com, leave a note on our blog or send us a direct message on Twitter, @lcsmchat.

Guest Post: Does Cancer Screening Cause “Overdiagnosis”?

The guest post below is written in response to Dr. Scot Aberegg’s blog post.  His and other recent blog posts and articles have claimed “overdiagnosis” of breast cancer and lung cancer due to screening.  Andrea Borondy Kitts, a former engineer and fellow Lung Cancer Social Media tweeter whose husband died of lung cancer last year, addresses Dr. Aberegg’s claims in her letter.


Dr. Aberegg, thank you for your interesting post on overdiagnosis problems with breast and lung cancer screening. I would like to comment on many of your points.


I am a mechanical engineer.  I have a Master’s degree in Management and retired after a 32 year career in aerospace, 10 years as an executive. I am back in school getting a 2nd Masters degree, this time in Public Health. I advocate for lung cancer as a volunteer for the American Lung Association, for the National Lung Cancer Partnership, on twitter as @findlungcancer, and for several Hartford CT area hospitals with their lung cancer screening programs. I lost my husband, Dan, to lung cancer on April 12th, 2013 after an 18 month hard fought battle. Dan had all the risk factors for lung cancer. He was 69 years old at the time of his diagnosis, he had quit smoking 11 years prior to his diagnosis, he had an 80 pack year smoking history, his sister had died of lung cancer at age 62 and Dan had COPD. Unfortunately, at the time of his diagnosis, lung cancer screening was not recommended.

Comments on the BMJ paper about the Canadian National Breast Screening Trial:

We had a 3 hour discussion in my UConn Chronic Disease Control class last week about the recent British Medical Journal (BMJ) paper on the 25 year follow up to the Canadian National Breast Screening Study. In attendance were 2 cancer epidemiologists, one a breast cancer expert, and an oncologist with breast cancer expertise.  In conclusion, the consensus among the experts was the study did not provide enough credible evidence to change the recommendation for breast cancer screening in the US.

Key concerns raised with this study:

  • In the mammography group 2/3 of the breast cancers found were palpable. This is not consistent with clinical breast screening experience where most breast cancers found with mammography are too small to feel.
  • Screening was only for 5 years. Most breast cancers are slow growing so may not have screened long enough to capture the difference in mortality. The risk for breast cancer increases with age, so each passing year after the screening stopped the women had a higher risk of getting breast cancer. The number of breast cancers found in the mammography and non mammography arms were the same after the 5 year screening period was stopped.
  • Although mortality did not differ between the 2 groups, the cancers found in the mammography group were smaller and less were lymph node positive.
  • The study is predicated on universal access to adjuvant therapy. Canada has a National Health System so all women have access to care. This is not the case in the US.

Other discussion points:

  • There are 22 million women in the US between the ages of 40 – 49. Not screening this population would save a lot of money.
  • Need to have better genetic markers for who will develop breast cancer to risk stratify the population to screen

My “take-aways” from the discussion

  • Large screening clinical trials/studies are hard to do right especially with decades of follow-up; often new technology and new treatments can overtake results
  • Policy can be influenced by strong advocacy sometimes resulting in non-evidence based recommendations
  • Even the experts don’t fully understand the results and don’t know how to apply to population recommendations

Comments on lung cancer screening:

The most important point to consider when comparing lung cancer screening to Mammography or PSA screening is that lung cancer screening is different.  Screening is limited to the high risk population and the gold standard randomized trial, the National Lung Screening Trial (NLST), showed a 20% mortality reduction with LDCT screening versus chest x-ray.

I don’t understand the derivation of your NNS of 950. The original paper published in the NEJM calculates the NNS as 320 for the NLST study population.

One of your discussion points focused on all-cause mortality being biased lower in the LDCT group, not because of incidental findings, but because of changed behavior in the LDCT group with false positives; for example smoking cessation. I do not think this biases the results. The results are a real, albeit, an unintended benefit for LDCT screening. The public health and medical communities have been continuously searching for ways to influence people to adopt healthy behaviors.  It’s wonderful, if in fact, LDCT screening provides a “teachable moment” resulting in healthier behaviors and improved outcomes.

Your discussion about telling folks to quit smoking as a better alternative to lung cancer screening is flawed in that, more than 50% of lung cancer diagnoses are in former smokers. These are people who have already quit smoking. Their only hope for improved survival is for secondary prevention in the form of early diagnosis with LDCT screening.

Your discussion about older people not being screened due to overdiagnosis because of mortality due to other causes is disturbing. You seem to be advocating that when people reach a certain age, we should give up on any type of screening because they will probably die soon anyway. I was particularly shocked with your statement “What if, in essence, we save a lot of people from lung cancer who then die from a heart attack 6 months later?” This would imply we should not treat any disease with a 6 month or less prognosis; let’s just save the money, 6 months is not worth the expense to society. WOW. You criticize the USPSTF final recommendation to screen to age 80 as too old. However, you neglect to mention the USPSTF modifier that “screening should be discontinued once a person has not smoked for 15 years or develops a health problem that substantially limits life expectancy or the ability or willingness to have curative lung surgery”.

And finally you discuss how a physician patient discussion on lung cancer screening might go. I would like to add a few more scenarios to your hypothetical discussion.

  • There is now a recommended screening test for lung cancer for a high risk population. I think you might be in the recommended to screen group. I wanted to review your risk factors with you and discuss if screening might be right for you.
  • It’s great that you stopped smoking 11 years ago. However, your risk level is still elevated. Your heavy 80 pack year smoking history puts you at increased risk. We know there is a strong dose response relationship with smoking and lung cancer. In addition, knowing that your sister died at age 62 from lung cancer, puts you at increased risk as well. You also have COPD another known risk factor.  I have a risk calculator I use to help me stratify risk for my patients. http://www.brocku.ca/lung-cancer-risk-calculator
  •  There is a 25% chance you will have a finding from your screening. 95% of the time it will not be lung cancer. Most of the time, the follow up to the finding is another LDCT. There is a small possibility you would have a more invasive procedure. However, the benefit of finding lung cancer at an early stage is improved survival. At stage 1a there is an 85% chance you will be alive after 5 years. At stage 4 that is less than 10%.
  • Based on your risk profile, I think you should consider LDCT lung cancer screening.

The point is that each patient is unique and the discussion with the patient should be tailored to the risk profile for the patient. The discussion you portray would not be appropriate for my hypothetical patient, who yes, happens to fit the profile of my husband who died in April 2013 from lung cancer.

Lung cancer is the leading cause of cancer deaths in men and women in the US and worldwide. It is the second leading cause of all deaths in the US after cardiovascular disease. More people die of lung cancer than breast, colon, and prostate cancer combined. Five year survival at 16% is essentially unchanged since 1975. We finally have a screening test for lung cancer and if everybody would stop trying to discredit the test and just get out of the way we will save lives!