Posts Tagged ‘screenings’

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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Posted in Lung Cancer Survivors, Stories of HOPE | Comments Off

Juhi Kunde

From Scientific Idea to Life-Saving Pill

June 15th, 2012 - by Juhi Kunde

by Juhi Kunde

Every so often, a scientific experiment triggers an idea with the potential to save lives.

But it requires many critical steps to convert a scientific idea into a pill that cures disease. These steps are called “translational research” projects – and they are time-consuming, expensive and do not guarantee a successful outcome. They are also very underfunded.

People are starting getting interested in translational research. I recently read a magazine article noting that scientists conducting translational research face a major hurdle. It is, of course, money.

Like an inventor who has a good idea, a scientist with a potential breakthrough has to find funding to develop and then test his ideas. And when you are trying to develop new diagnosis or treatment techniques and then run clinical trials that meet FDA-standards, you are running multi-million dollar projects that will likely take decades to complete and have a high probability of failure. Not an easy investment to sell to biotech and pharmaceutical companies.

Without other funding sources, these breakthrough ideas will end up in (what the industry has dubbed) “the Valley of Death” – i.e. the place where innovative ideas go to languish and die because they don’t have enough funding to be developed and tested.

While for-profit companies cannot swallow the price of failed science, smart non-profits, universities and government agencies understand that failed experiments are the price we pay for major breakthroughs in the field. That is why LUNGevity, the National Institutes of Health and others have policies in place to boost translational research.

With every risk of failed science, there is also a hope of innovative life-saving success.

And if we want to see big improvements in patient care, we should foster that hope with all our might. But fostering hope does not mean just throwing money at scientists.

Each promising translational research project should be vetted by experts in the field, guided by milestones, and discussed with colleagues to give it the best possible chance of success. That is what LUNGevity does.

By funding translational research, encouraging multi-disciplinary communication and shepherding ideas through “the Valley of Death”, LUNGevity bolsters the chance of successful translational research in the treatment and early detection of lung cancer.

Because, at the end of the day, successfully converting a scientist’s idea into a new lung cancer therapy is worth the risk of a few failed attempts.

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The Team Grace Story

October 12th, 2011 - by admin

by Cheryl and Ryan Grace

As a Non Smoker I was diagnosed with Stage IV NSLC in April 2006 at age 35 with  two little girls ages 1 and 2, new house etc.  We found out after I lost feeling in my legs and an MRI showed three brain mets and a CT Scan showed a small spot on my right lung.  Brain Surgery + Gamma Knife, radiation, lobectomy, chemo and things were looking pretty good.

About a year later, we found more brain mets, and two small spots on my left lung. Another brain surgery, more Gamma Knife, whole brain radiation and continuous chemo.

About two years ago we found a few bone mets, and last year I had another brain surgery and more Gamma Knife.

Long story short, I am a 5 ½ year Stage IV survivor. My kids are ages 6 and 7 now and without the support of my family and friends (all a part of TEAM GRACE) I would not have beaten the odds that were laid out in front of me back in 2006.

Recently, I had another setback, hence the TEAM GRACE resurgence this year.  We look forward to seeing you on Oct 23rd at Breathe Deep NYC

TEAM GRACE is currently the largest team registered to participate at the Breathe Deep NYC event with 91 members.  They’ve already exceeded their fundraising goals and raised more than $12,000.

Congratulations TEAM GRACE and thank you for joining us in raising awareness and funds for life saving research!

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Posted in Events | 6 Comments »

Biopsy Risks are Real

July 6th, 2011 - by admin

by Juhi Kunde

Risky biopsies are the worst. Well, okay, not worse than cancer.
But they are pretty awful. I mean, you go in for a biopsy because your doctor thinks you might have cancer, but then after a complication from the biopsy you end up on Death’s doorstep way earlier than any cancer would have killed you. How is that for ironic, Alanis Morissette?

Lungs harbor a dark, moist, oxygen-rich environment where so many microbes would thrive. And of course, our lungs are essential for our survival and quality of life. This means that lung cancer biopsies have their own unique set of challenges and risks. In fact, the National Cancer Institute makes a point of mentioning that “a biopsy to diagnose lung cancer can cause part of the lung to collapse. Sometimes surgery is needed to reinflate the lung.” And with such surgeries and invasive techniques come increased risks of infections and other complications. These risks are real.

I ought to know. I spent the better part of last week at the hospital, watching my Dad fight for his life after a biopsy. His PSA level was a little high. So, he had a routine biopsy for prostate cancer (a relatively safe procedure done in the doctor’s office) in which about 5% of the cases end up with a systemic infection that is cured through antibiotics. Unfortunately, my Dad’s infection was resistant to all oral drugs and the majority of intravascular antibiotics. Eventually, the doctors were able to find something to kill the infection and after almost a week in the hospital my Dad is now resting at home.

My Dad’s biopsy was negative. This left me feeling very relieved but also sad. He went through such an ordeal when there was nothing wrong with him. Now I will probably never be able to convince him to have a biopsy again.

I understand that at some point in the treatment of cancer, the doctors will probably need to extract and examine a piece of the tissue. But biopsies of internal organs shouldn’t be taken lightly. The risks from skin biopsies are nothing compared to the risks from prostate or lung biopsies.

By quickly advancing lung cancer imaging techniques and funding research for lung cancer biomarkers, LUNGevity is working hard to reduce the number of high-risk biopsies for lung cancer patients. This translational research also has a trickle-down effect. Because techniques that are developed for one type of cancer often can be applied to other types of cancer, LUNGevity is helping to ensure that patients around the world, including my Dad, never have to put themselves at risk to find out if they have cancer.

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Posted in Why You Should Care | 7 Comments »

A Personal Journey Toward Awareness

June 22nd, 2011 - by admin

“Why should I care? A Personal Journey Toward Awareness”

 by Juhi Kunde

Why should I care about lung cancer? A lot of people ask me that… Most recently I was meeting an old friend that I hadn’t seen in almost 15 years. When he asked me for the current recommendations to prevent cancer, I found myself sounding a lot like a mentally-unstable person warning of a coming doom – “Get a colonoscopy! Check your PSA levels! Wear sunscreen! And donate money to fund lung cancer research. You could have it and not even know it!”

My friend looked perplexed, “Did someone in your family die from lung cancer?”

“No,” I answered, “No family history of any type of cancer. We have stroke, diabetes, heart disease, but no cancer.”

“Do you smoke?”

“Nope – I can’t stand the smell, actually. You know that.”

“So, what’s with the lung cancer angst?”

“Angst?” I said with a laugh, “Yeah, I guess you could call it that. But if you knew what I know, you’d be a little angsty yourself.”

Conversations like this help me to understand how much misinformation is out there and how far I’ve come in my understanding of the disease and the obstacles facing lung cancer patients today.

I started learning about lung cancer when I worked for a cancer non-profit in Washington D.C.  There, I learned that some research was going on to develop CT scans as a tool for diagnosing lung cancer early. And, of course, the importance of not smoking was reinforced as that is a major way to reduce your risk for lung cancer.

But I also learned that lung cancer was a politically-charged topic, with research funding being hard to come by. Afterall, most people consider it a smoker’s disease. Many people think: Eh, the smoker’s know the risks and they are doing it anyway. This kind of attitude makes it difficult for legislators to earmark federal dollars for lung cancer research. At the time, the nation didn’t have a voice to speak up for lung cancer research. Legislators couldn’t hear the country demanding we stop the leading cancer killer in the country. So the research dollars weren’t there.

When I became a freelance writer and began to write for Protect For Lungs, and ultimately LUNGevity, I did a deeper dive into the numbers. It was scary – I learned that lung cancer is not just a smoker’s disease. Way too many people who have quit smoking or never started have lung cancer. And the disease is caught so late the mortality rates are horrifying. I’d sometimes imagine what I’d do if I was diagnosed with lung cancer, but there wasn’t a clear answer. I mean, sure I’d fight. I’d fight like everyone else. But how would I even know that I had it? How could you keep an eye out for it? How could you detect it early? You can’t. Not really. Not yet.

So, then I surveyed the other organizations involved in funding translational research to put an end to lung cancer now – it didn’t take long. There was only one. And, boy, was I glad I was involved with them! I saw just how the dire the situation was and how much hope and support that organization brought to thousands of people each year. And when I started interviewing lung cancer survivors and the people who had lost loved ones to the disease, I knew I had to help. I had to spread awareness and I had to help them raise money to fund meaningful research.

That’s what I do now. I help. And sometimes I even get a little angsty.

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