Posts Tagged ‘cancers’

Kenneth Lourie

Definition of Slippery Slope

May 22nd, 2013 - by Kenneth Lourie

Figuratively speaking, of course. That definition being: a late stage cancer patient/survivor previously characterized as “terminal” awaiting the results of their most recent diagnostic scan. A scan that will indicate whether the tumors have grown, moved or God forbid, appeared somewhere new. If your life hung in the balance before the scan, waiting for results of this however-many-months-interval-scan will most assuredly loosen your figurative grip on your equilibrium and your most literal grip on your sanity. This is a domain, unlike the one referred to in one of the more infamous Seinfeld episodes, that one cannot master. To invoke and slightly rework Dan Patrick’s “catch” phrase: You can’t stop it, you can only hope to contain it.

Unfortunately, for many of us cancer patients, cancer is the big dog, and if it wants to get off the porch, it will. Our staying put on the porch, however, won’t likely protect those of us inflicted with this most insidious disease. In fact, standing pat – on or off the porch, isn’t likely to have much effect, either. In many cases (make that individuals) cancer is in control. In the medical profession, as much as it has researched and studied, and as many dollars as it has committed in the pursuit of eradicating cancer, the reality is there is much work yet to be done. Though many improvements in diagnosis and treatment have occurred, thereby lengthening life expectancies (I’m living proof of that); still, in many (make that most, let’s be honest) instances, “cancer” is the last word anyone wants to hear associated with whatever symptoms manifested themselves that led to their seeking a medical evaluation in the first place.

I wouldn’t say that a terminal patient’s day-to-day existence is chaotic, but neither would I characterize it as the most predictable set of circumstances. I imagine it’s a bit like living in the wild, where you have to live by your wits and trust your instincts. Moreover, I don’t know of any Living with Cancer for Dummies-type book full of wit and wisdom that exists for the newly diagnosed cancer patient. Being there – diagnosed and treated for cancer previously – and currently, and having already done that (lived/evolved with a terminal prognosis), certainly helps moving forward, but it’s hardly a desirable location and certainly not a cure-all (I wouldn’t mind if it were a cure-this-one, though). However, given the choices, I’d rather have the experience (meaning I’ve survived) than not (the definition of DUH). Avoiding it altogether is the goal. However, as this lifelong non-smoker with no immediate family history of cancer can attest: that is much easier written than realized.

But as you regular readers know, I don’t complain. It’s a miracle/amazing/extremely fortunate/inexplicable almost, that I am still sitting here – upright and fairly productive, four years into a “13-month to two-year prognosis.” I wouldn’t describe my diagnosis-to-date, Kenny-with-cancer life as having been a walk in the park; more like a series of mini challenges, akin to crossing a stream dotted with stepping stones. Still, it is life, and I am living it, and I’m certainly not going to let a few stones – figuratively or literally, get in my way. Cancer be damned.

What keeps you from sliding down the slippery slope emotionally?  Share your tips, comment below.

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“This column is my life as one of the fortunate few; a lung cancer anomaly: a stage IV lung cancer patient who has outlived his doctor’s original prognosis; and I’m glad to share it. It seems to help me cope writing about it. Perhaps it will help you relate reading about it.”

Mr. Lourie’s columns can be found at www.connectionnewspapers.com. (key word, Lourie)

Read Kenneth Lourie’s 1st LUNGevity blog post & bio.

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Kenneth Lourie

My Team

March 26th, 2013 - by Kenneth Lourie

Not literally, of course. Nor am I the coach or the general manager. But I do feel like an owner, in that there are people that I invest in – again not literally, but definitely emotionally.

The people who express the kind of positivity and confidence and encouragement – and empathy and understanding quite honestly, of the demands and rigors physically, emotionally and spiritually of being a terminal cancer patient. Aside from my immediate family and inner circle of friends, co-workers, and fellow cancer patients with whom I’ve connected, I refer to all the people who have sent cards, letters, e-mails and general well-wishes offering their hope, prayers and confidence in yours truly surviving this ordeal.

Moreover, there are people I’ve met along the way: health care providers, therapists, newly diagnosed cancer patients, previously diagnosed cancer patients, individuals who don’t know me/don’t know my story; whose personality, perspective, enthusiasm and sincerity have empowered me, and who have exuded the kind of positive and uplifting spirit that fuels the passion that a stage IV lung cancer patient tends to lose as the fight for one’s own survival continues. To invoke a sports cliché: these are people who are good in the locker room/clubhouse.

These individuals are selfless, dedicated, motivated, caring, concerned, successful, can-do-type positive influences who optimize their optimism and bury their pessimism, especially around a terminal cancer patient. The last thing, the absolute last vibe that a terminal patient needs is negativity, depression, anxiety, worry and stress; internally and equally importantly: externally. I don’t need to feel or be influenced by or be in the presence of anybody – or anything, that intentionally or unintentionally (by their nature) brings me down or opens me up to self doubt, or doubt of any kind for that matter. I need to believe. And most importantly, I/we need to be infused with positivity. And I don’t mean Stepford Wives-type behavior (robotic, following a script, lacking in substance) either. I mean, the human touch, emotionally certainly and occasionally even physically. In summary, we need a connection, a feeling of togetherness and mutual awareness of the patient’s plight and a willingness to face it and dare I say, discuss it together in an intelligent, thoughtful and exuberant-type manner where the highs – in life and in any treatment protocol, are maximized and where the lows are minimized.

The up-and-down-and-all-around existence of a cancer patient who’s terminal is already as much negativity (which becomes almost endemic) as one can endure. Therefore, any more negativity from any source in any way/context might just push that patient over his or her emotional edge. An edge which might involve a metaphorical set of finger nails.

Who knows really, what the patient’s limitations are? We only know who, what, where and when circumstances exacerbate an already precarious position, a position certainly worth avoiding.

My team consists of individuals with attitudes that reflect this reality. It may not be for everybody. But it better be for the cancer patient. “I don’t know much, but I know that.” (Ben Affleck – out of context, from the movie “Good Will Hunting.”)

Who’s on your team in this fight against lung cancer?

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“This column is my life as one of the fortunate few; a lung cancer anomaly: a stage IV lung cancer patient who has outlived his doctor’s original prognosis; and I’m glad to share it. It seems to help me cope writing about it. Perhaps it will help you relate reading about it.”

Mr. Lourie’s columns can be found at www.connectionnewspapers.com. (key word, Lourie)

Read Kenneth Lourie’s 1st LUNGevity blog post & bio.

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A Message to Lung Cancer Professionals

October 15th, 2012 - by admin

Teri Simon, a long-time survivor, author and advocate who passed away from stage IV lung cancer in 2012, gave this speech to an audience of medical professionals last year. We are honored to be able to share it with you.

“On December 2, 2009, I was diagnosed with Stage IV Metastatic Adenocarcinoma of my right lung.  It was a stunning diagnosis, mostly because I had NO predisposing factors for any kind of cancer whatsoever, let alone LUNG CANCER.  Over the next couple of months, as I tried to recover from that shock and became a subject in a clinical trial for Tarceva (yes, I am an EGFR mutant), I recalled an old, old riddle:

Why did the Flying Elephant crash to the ground?

Because somebody told him that elephants can’t fly.

It occurred to me that perhaps one way to survive this Lung Junk business was to combine just the right amounts of realism, denial, and hope together.  Thus, I became a Flying Elephant.

(Teri Simon has written two books, created an active blog and spoke to patients and medical professionals from the viewpoint of someone with stage IV lung cancer)

“In addition to being a Flying Elephant, I am a number of other things:  a mom, a social worker, a friend, a writer, and a Jew.

When I was young, my mom was my Hebrew teacher.  She taught that the central part of a Jewish prayer service, the Amidah, was broken down into 3 segments:  Goodies, Gimmes, and Thank You’s.

Goodies are the sucking up to God part:  God is great, God is awesome, yay, God.

Gimmes are petitions:  Gimme this, gimme that.

Thank you’s are self-explanatory.

So here are the Lung Cancer Goodies:

Man, y’all (medical professionals/researchers) ROCK!  I participated as an audience member in a LUNGevity webinar a few weeks ago.  One of the researchers announced that he’d been working in the field for 15 years, but that it’s been in the past 2 or 3 years that advances have been made at lightning speed.  It made me think back to when I was first diagnosed.  I never asked “Why me?” but I often asked “Why now?”

Lately, I recognize how lucky I am to have been diagnosed now, now when advances and new discoveries are a daily experience, when there have never before been so many treatment options, so many options for personalized treatment.  It’s because of YOUR efforts, YOUR imaginations, YOUR drive, YOUR collaborations.  Like I said before, y’all ROCK!

Now the Gimmes….Y’all, I have a loooooooong list of petitions, but for the sake of time, here are my top 5 requests:

  1. Consider taking tobacco OUT of the lung cancer equation. I spent my life believing that if I never smoked, ate right, and exercised, lung cancer would never happen to me.  Well, I was misled. I was duped. I was wrong.  If I had a nickel for every MEDICAL provider who asked me if I had been a smoker, I’m pretty sure I could pay for a chemo treatment.  Sometimes it doesn’t matter WHY we get a disease, especially when it can’t be UN-DONE.  Sometimes it only matters THAT we have the disease, and what we’re going to do about it.  The smoking stigma doesn’t help, in fact, it hurts.  A lot.  As if I deserved this….Anyway, please consider taking tobacco out of the equation.
  2. Appreciate your study subjects, especially in Phase I trials.  These people are literally risking their lives to help make a difference in someone else’s.  This deserves gratitude, reverence, attention, and kindness.  Your advances are spectacular, but they’d be impossible without those brave study souls.
  3. Collaborate your efforts and check your ego at the door! You’re brilliant and dedicated; that’s undeniable.  But if you work in a bubble and insist on things being “my way or the highway,” you will never appreciate the fullness of discoveries that only happen through sharing.  Researcher A might have part of a question answered, but without Researcher B, the rest of the question remains a mystery.  Work together and ALL of you can get the Nobel Prize you deserve!
  4. Don’t forget  your humanity.  You have lives, your subjects have lives, your patients have lives.  Those lives now intersect.  Lung cancer sucks.  It’s scary and painful and deadly.  You might be immersed in numbers and facts all day, but your patients, well, they’re only living THEIR lives, so your “old” information is “new” to them.  Please try to remember that in your interactions.  To you, it may be all numbers.  To us, it’s our lives.  Your compassion is VITAL.  Truly.
  5. Care for one another.  The only way we, any of us, can manage through this lung junk is if we support one another.  The day you experience a clinical triumph may be the very day a colleague suffers the loss of a patient.  You know it happens like that.  I encourage you to support one another, celebrate together, mourn together. It’s how you’ll keep the drive to keep going.

So now, the Thank you’s.  This is the really easy part:

Thank you for getting up every day and being willing to beat your heads against a wall of frustration.  Thank you for hoping against hope for your patients.  Thank you for thinking outside of the box to get the job done.

Thank you for your passion, compassion, brilliance, drive, and ability.

We appreciate you.  Please don’t stop.”

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Susan C. Mantel

Celebration of Science and Keeping the Party Going

September 19th, 2012 - by Susan C. Mantel

I recently spent a remarkable weekend seeing the results of two decades of investment in scientific research across many different areas of healthcare. This amazing event, called “A Celebration of Science” was organized by Faster Cures, and included 1,200 attendees from 200 organizations. Participants represented the NIH, NCI and other public and private research institutions; the FDA; leading advocacy groups; patients who shared the impact of scientific advances on their lives; philanthropists; the pharmaceutical, biotech, and device industries, and many of our elected representatives.

The week-end was designed to “honor individuals whose work saves, improves and extends lives, and those who make that work possible,” including patients who participate in clinical trials and those who share their stories. Above all, it was designed to really make the case for why investing in research is a smart decision in any economy. Research creates jobs in the lab and through new types of science-related businesses. Even more importantly, by saving lives and improving quality of life for those affected by various diseases, it results in a more productive workforce and society.

Like all of us in the lung cancer trenches, I want progress in lung cancer to be much further and faster than it has been, and I remember thinking the first afternoon–when I saw the statistic that the overall five-year cancer survival rate is now 66%–“lung cancer is still so far below that.” But being with all of these brilliant people dedicated to making life better through science, hearing how thoughtful and determined they were to continue innovating along all the aspects of the scientific continuum, and seeing some honest-to-goodness breakthroughs gave me so much hope! I was also reminded of how all these advances build off each other.

For example, the cost of sequencing the human genome the first time was about $3 billion and took over a decade. Now it’s less than $10,000 and takes a couple of weeks, with $1,000 sequencing in days in sight. This is turning the conversation to “precision medicine,” which was brought vividly to life by a set of twins who were successfully treated for a genetic defect—going from minimal muscle control and other grave challenges as children to competitive teenage athletes today.  Then a couple of days after the meeting, the squamous cell lung cancer findings from the Cancer Genome Atlas were published.

Until this year, most of the advances in lung cancer treatment through targeted therapies were happening in adenocarcinomas. With about 400,000 people dying of squamous cell lung cancer worldwide each year, this is another area of urgent need. And more than 60% of the tumors had mutations that are potentially “druggable” with medicines in development for other cancers. So, we have new information with which we can potentially DO something. The “what” has a “so what”.  Furthermore, this form of lung cancer is only the second common cancer type for which a genetic analysis was performed as part of the Cancer Genome Atlas. Attention is being paid!

The Celebration showcased so many other tremendous advances, including in fields like HIV (did you know about “the Berlin patient”—the first known case of someone cured of HIV?), brain imaging, and research and rehabilitation of our wounded soldiers. Yes, these areas all still have unmet needs, and we have miles to go in areas like Alzheimer’s, traumatic brain injury and PTSD, and, of course, lung cancer.  Ultimately, though, we are living in exciting times of progress and collaboration, where continued investment in research is yielding progress of which generations before us could only dream. I can’t wait for the “Amazing Advances in Lung Cancer” session at the “Celebration of Science” event of the future!

Susan C. Mantel

 

 

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Juhi Kunde

Should We Tell?

September 12th, 2012 - by Juhi Kunde

I am drained and tired. I have nothing to write about. My ideas are stupid and my words are cliché. I can barely draft a complete sentence.

Why am I so fried?

Because I just found out someone dear to me has cancer.

I keep trying to read as much as I can about it. But all I have is the generic name of the cancer. And I can only go so far with that on Google. I need more information but the family is reluctant to tell me more.

They know that I will attempt to gain control of the situation. They know that I will be up late at night scouring the millions of cancer pages on the internet for hidden answers. So, they speak in circles and make me dizzy with worry.

I wonder if it could be a cultural thing – an Indian thing. Maybe it’s an artifact of immigration. Or perhaps it’s just that modern families are often spread across the country or even across the world.

In so many families the question arises: Should we tell them?

Whatever the specifics, the basic scenario is the same: the family is split-up. Typically, the parents still live in their home while the kids have grown up and moved away. Then the inevitable case of poor health strikes someone, somewhere. And the question rears its ugly head.

Most families have an unspoken understanding of some sort. Often minor illnesses, such as colds and ear infections, are safe to keep from the rest of the family but anything requiring a cast or hospitalization should be disclosed.

In these situations, most family members want to hear the news, however bad it is. But sometimes the other family members are unwilling to burden them.

They don’t want them to worry. They don’t want them to spend hours on the internet instead of working. They don’t want them to buy expensive last-minute airline tickets.

But they also don’t want to lie.

So they tell partial truths. Or they “forget” to mention the critical details. Or they pretend the reports have been delayed.

The irony is that all these antics to avoid causing worry could be causing far more concern than the naked truth would have.

Obviously, my preference is for sharing the complete truth but I know there have been situations where I had to think long and hard about who to tell and how much to tell them.

What about you?

Did you have to decide how much to tell your family about your cancer journey?

Did you have to decide whom to tell?

How did you make these difficult decisions?

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