This morning, I was planning on writing a scientific and technical post about the EML4-ALK mutation in response to several requests for information about it. It occurs in some lung cancers and effectively prevents drugs from working. Pfizer have a compound in development for targeting this mutation, it is currently in phase II trials and soon to begin phase III.
During my researches, however, I came across some dialogue between patients on the excellent Lung Cancer Alliance support site, Inspire. The goal of this online patient group is:
"Inspire is a place where you can connect with people who share your
health concerns and find information and advice in groups sponsored by
organizations you know and trust."
Patient conversations both intrique and fascinate me, reminding me vividly of my days following the hopes, fears and progress of chronic myeloid leukemia (CML) patients in the Gleevec trials. You learn about their struggles, how they manage the practicalities and logistics of doing a clinical trial, what side effects they experience and how they cope with them. You also hear the good news and the bad news, warts and all. It's very uplifting to follow these stories, you can feel the strength, resolve and determination to succeed in many of them. The words of advice and support clearly matter a great deal to those going through the experience.
Here is one post about the EML4-ALK trial that particularly caught my eye:
"In August of 2007, I was diagnosed with stage IIIa/b Non-Small Cell
Lung Cancer at the age of 29. As it always is when being diagnosed with
any form of cancer, I was shocked. I was especially concerned because
of the lack of information that exists surrounding lung cancer and the
extremely poor survival statistics. I am a lifelong non-smoker and I
have always remained active in sports and athletics. I'm writing today
because I want every single patient who has been diagnosed with
non-small cell lung cancer to tell your doctors that you want to have
your tumors biopsied and tested for every type of genetic mutation that
they know of, especially the EML4-ALK mutation. I had been on six
cycles of Cisplatin/Alimta with minimal results. I then had two months
off before taking Tarceva with negative results. I then went on two
more cycles of Alimta. As I was on Alimta the last time, my oncologists
and pathologists discovered that the EML4-ALK mutation exists in the
tumors in my body. It is very weird to think about it now, but the
timing of this was impeccable because a clinical trial was open through
the Harvard medical system up here in Boston, MA for a study of a
inhibitor drug that targets the EML4-ALK mutation. I started the drug
on June 5th. I went over the scan results yesterday with my clinical
trial team to compare with the baseline scans taken before beginning
the clinical trial. To say that the drug is working…is an
understatement. The tumor is dead from the inside out, which is called
necrotic cell death. The left side of my lung, which was shrouded in a
cloud when viewing the baseline CT scan, is now showing more signs of
it becoming clear. Substantial response. I hope that the drug continues
to destroy these tumors that are located in my left lung and pleura.
The lymphatic activity has also decreased significantly as well. If any
of you have biopsies, I urge you to tell your doctors that you want
them tested for genetic mutations such as EGFR, K-RAS, EML4-ALK and
every other known mutation. The drug's side effects are minimal with
diarrhea once a week and some nausea at the beginning but your body
gets used to it. The side-effects are MUCH more tolerable than platinum
Source: Lung Cancer Alliance
What followed was various other patients and caregivers asking questions, offering support etc. Throughout, the gentleman remained patient and upbeat, helping others where he could and being equally thoughtful in spades and replying to as many comments as he could. I was impressed and felt my own spirits lifted by his energy and heart.
After scrolling to the end, I noticed there were no comments from him, surely not! The original comment was posted on July 31st, 2008. Then on June 26th, 2009 I found a post from one of his fellow trialists:
"This is difficult to post–but I feel it is necessary to let people
know that Kevin passed away on 5/28/09. I was enrolled in the same
trial as Kevin, and I told him once that he was like my beacon in a
storm–he was always so brave and positive. Kevin fought as hard as a
person could fight–and it would be impossible to have a sunnier
outlook than Kevin had. It is not only terribly sad, but it makes all of us feel uneasy when
one of our own, someone who fought so valiantly, passes. There is a
terrible randomness to all of this–and it is important to not lose
personal hope. I miss my friend Kevin, but feel compelled to fight even
harder in his memory."
Source: Lung Cancer Alliance
From the time of diagnosis to his death was a mere two years. Remember, he was a youngish non-smoker in good health and fitness who happened to get lung cancer. It could be any of us reading this in that boat and that's what makes the story all the more surreal and terrifying.
For me, the real heroes of the Pharma industry are the patients who volunteer to participate in clinical trials with often nothing more than a leap of faith and hope that things might work out. It's the biggest risk anyone will ever face – roll the dice on your life and hope for a positive outcome.
When Pharma and Biotech people get bogged down in petty office politics, bureaucracy and turf wars, perhaps they might actually stop and think about something bigger and more important in the wider scheme of things:
"What's the right thing to do for the patient?"
Or how about:
"Are we doing the best we can to improve the lives of patients today?"
If you focus on either of those aspirational thoughts as the single most important thing you do all day, the rest really doesn't matter anymore. After all, you could be diagnosed with lung cancer tomorrow.
We are all on the earth for just a smidgeon of time, we might as well spend it making a difference.