Lung Cancer Awareness Month 2015
Monday, November 16, 2015
Lung Cancer Awareness Month 2015
Wednesday, November 4, 2015
Lung Cancer Awareness Month 2015
Saturday, September 26, 2015
Monday, June 15, 2015
I’ve heard many stories of people being sent links to websites promoting alternate naturopathic treatments for cancer by well meaning friends and family. It finally happened to me. I got an email from an acquaintance who told me she believed that I was making a mistake signing up for a clinical trial, and that I should be using natural treatments based on diet and supplements such as turmeric and IV vitamin C. She quoted the saying “Let Food be your Medicine”, and pointed me towards the website thetruthaboutcancer (no, I am NOT going to link to that site from my blog, it gets enough traffic). She also told me that I was signing up to be a guinea pig.
This blog post has been in the works in my thoughts ever since. I do not think that this good-hearted person is on the right track, and sincerely hope that, for her sake, she never develops cancer and never has to put her alternate treatments to the test. In thinking about what she said, however, I finally crystallized for myself the reason why I will not pursue the line of treatments she would suggest.
It’s only outliers.
The first thing I appreciate about research-based medicine is its honesty. Medical scientists and doctors know that when it comes to advanced cancer, most of their treatments suck and have limited success. They keep track of their failures as well as their successes, and will inform you of probabilities of effectiveness if you ask for them.
Diseases and treatments have outliers - the people who have radical remissions, who have an exceptional response to treatment, who against all odds recover. The treatment I just stopped using, Tarceva, has its outliers. If you visit the patient support forums at websites like Inspire.com, you will find stories of people who have successfully used Tarceva for 4, 5, and more years, and even a lucky few who are NED (No Evidence of Disease). When my doctors talked to me about Tarceva, however, they did not promise me those 4 or 5 years, much less NED, or even suggest that such success might be possible. They told me about the median response of 9 to 11 months. They were honest with me.
The same goes for the experimental drug I have just started taking. I’ve been told that about 500 people have taken this drug, and about the range of side effects they have experienced. I’ve been told that data are incomplete because clinical trials are still in progress, but that initial results suggest a median response of 9 to 11 months.
When it comes to getting similar types of information about naturopathic treatments, however, no such data seem to exist. There are individual stories and testimonials. “I know someone who...” and “I heard about someone who...”, an occasional “I am someone who...”. The naturopathic doctors, however, do not seem to be collecting data about their successes - or their failures. Maybe there is some hurdle to collecting and communicating information that I can’t see, but it seems to me that practitioners offering treatments that are superior would have a strong incentive to join together to pool information that would prove the success of their approach. If naturopaths could do this, the cancer centers would be empty within days.
To be completely clear: yes, I want to be an outlier. I would love to be one of the people who beats expectations. When looking for an approach to get there, however, I’m distrustful of treatments that can offer me ONLY outliers, with only stories and anecdotes even proving that those outliers exist.
The path of research-based medicine has its outliers as well- outliers included in evidence that includes everyone, not just a few selected success stories.
I can only conclude that I really would be a guinea pig if I were to seek only naturopathic treatments.
Boring fact-based stuff I looked at while thinking about this post:
Being who I am, of course I looked for information on the Internet. I did a Google search on “survival data naturopathic therapies”, and did not find much in the way of scholarly papers or analytical articles. I did find the following:
- A compelling article written by pharmacist Scott Gavura, who sought out studies looking at outcomes for women with breast cancer who used only alternative treatments or refused treatment. He found 5 such studies. All of the studies show shorter survival times for women who refused standard medical treatment. https://www.sciencebasedmedicine.org/rejecting-cancer-treatment-what-are-the-consequences/#disqus_thread
- The abstracts for two of the studies discussed by Gavura. http://www.wjso.com/content/10/1/118/abstract
- A retrospective study comparing survival in lung cancer patients who received long-term integrative cancer treatment combining standard medical treatments with naturopathic treatments, patients who received short-term integrative cancer treatments, and control groups who received standard treatments only. The study purports to show that patients who receive long term integrative treatment have better survival times. The discussion discloses a significant flaw in the study: the control groups did not receive the same standard treatments as the integrative treatment groups, being much more likely to receive radiation rather than chemotherapy. In addition, standard treatment is not being compared to naturopathic treatments - every patient in the study received standard treatment. http://naturalmedicinejournal.com/journal/2011-12/benefits-integrative-cancer-treatments-lung-cancer-patients-0
- An article about integrative oncology featuring the work of Dr. Leanna Standish. Again, this article is talking about using alternative treatments in addition to standard medical treatments, not replacing the standard treatments. The number of patients involved is very small. http://www.medscape.com/viewarticle/813217
- As a counterpoint to the article just above, a discussion of how survival statistics can be skewed simply by excluding groups of patients from treatment, and therefore from the statistics, for example Medicare patients. http://scienceblogs.com/insolence/2013/03/07/the-cancer-treatment-centers-of-america-cherry-picked/
Tuesday, June 9, 2015
Sunday, May 31, 2015
Wednesday, May 20, 2015
I’ve thought about luck for a long time. For me, luck is what happens in our lives that we cannot control - which is a big chunk of all of our lives. We learn early to judge, so we label the stuff we can’t control “good luck” and “bad luck”. When I look at the luck in my life over the past year, I find myself using those labels often to describe what has happened. I wonder how useful they are.
All of my exercises in writing a short biography, which is something you do if you are active on social media sites, as I am, have included the word luck. One of my earliest attempts at summarizing my life included, “Although no one will remember me when I die, I am one of the luckiest people who has ever lived.” Since my lung cancer diagnosis, I’ve decided those words would not be easy for another to understand, whether or not I still believe them, so I’ve rewritten that part of my short biography as, “I’m very content to be one of the little people, whose names aren’t recorded in history books and who are remembered only by family and friends after they die. I’m luckier than most to live where and when I do.”
My favorite short biography is the one I wrote during the “Write your life in six words” meme that swept through the Internet several years ago. “Right place, right time, sheer luck”. These words have a very deep meaning to me. “Right place”: I live in a peaceful, affluent part of the world with clean air and abundant clean water. “Right time”: I’m living in a place and an era of history where I have an incredibly comfortable life due to inexpensive, abundant energy supplies available on demand - and I don’t even have to be wealthy to enjoy such comfort. “Sheer luck”: I did not have any control over where and when I was born.
Adding to “Right time”: medical science is now learning more about the type of cancer I have, so there are improved treatments available to me that have not been available in the fairly recent past.
When it comes to the cancer itself, I’ve used the words “good luck” and “bad luck” quite a bit over the past year. It was a shocking bit of bad luck to be diagnosed with stage IV lung cancer. I don’t care how much mindfulness theory of “the beauty of accepting things just the way they are” you or I or anyone else wants to throw at the situation, I’m still going to have a hard time not judging the event as a negative one in my life. It has been followed, however, with a series of events where it’s hard not to judge them as good luck:
- I tested positive for the EGFR mutation, which occurs in 10-35% of people with my type of lung cancer. There are targeted treatments for people with this mutation that may extend life.
- I was old enough and had enough years of active service in a retirement system to be able to retire shortly after getting the news. Not everyone with a similar diagnosis is that lucky.
- After developing resistance to my first line of targeted treatment, I tested positive for the T790M mutation, which happens in 50% of the people who develop resistance. This opens up a clinical trial for me for my second line of treatment - a shiny new drug called CO-1686 that has good results so far.
- I found out about the trial and signed the informed consent paperwork just a few weeks before the drug company closed the trial. They are getting ready to go for FDA approval. “Right time” works out again.
Given the complexity of the situation I’m in, I can no longer decide whether I’m having bad luck or good luck. I think that means it’s time to put those labels aside.