Archive for the ‘Testimonial’ Category

Dr. Jack West

A mistake I’ll never make again

February 10th, 2012 - by Dr. Jack West

   I usually write from the perspective of a lung cancer expert, but for one day and one post, I’d like to step out and speak from a patient advocate perspective.

   Though I spend a lot of time producing online content for patients and caregivers, really to enable patients to know enough to participate actively in their own care, I have confidence in what I know in caring for my patients and in the skills of the colleagues that I happen to work with. Probably because of that, I have had the confidence that other physicians know what they’re doing and will do a good enough job that I myself have often played the role of the historical “good patient” or “good caregiver” — in other words, I’ve assumed that any referrals were to a very good person and that they would do a great job.  Unfortunately, I was reminded in the course of my wife’s medical care that not playing an active role can come back to haunt you, which is something I want to always remind myself of when the time comes that we need medical care and the stakes are very high.  So a bit of background:

   A few years ago, I and my family were having a nice reunion with some of my medical school friends on the east coast, when one who works as an endocrinologist noted that my wife had a visible thyroid nodule (she never quite leaves work, I guess).  After the appropriate workup, it was found to be a thyroid cancer, which is certainly always of some concern but is extremely curable.  She went through the typical channels and saw an ENT surgeon who was supposed to have a lot of experience in doing thyroid surgeries, and I didn’t try to second guess her referrals and didn’t reach out to colleagues to find an expert.  Unfortunately, her surgery was complicated by the loss of not only her thyroid but also her parathyroid function, and the latter is a real pain.  She went from being healthy, energetic, and on no medications to less energetic (though fortunately easier for me to keep up with, I suppose) and on multiple pills throughout the day, requiring doctor visits, and with some real uncertainty about the potential ramifications over what we hope will be decades of follow-up.  And we’ve only heard from friends and colleagues who know more about thyroid surgery that while this complication is known to possibly occur, it almost never does.  And the folks I now talk who care for thyroid cancer patients in my community don’t seem to object to the musing that this particular surgeon might not have been the best one for the job, even if they try to be diplomatic about that.

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LUNGevity Advocate Matt Ellefson

November 9th, 2011 - by admin

I was first touched by cancer on December 31, 2009 when I was diagnosed with advanced non-small cell lung cancer.  Without treatments, I was given 8 months to live.  With treatments, I was facing a five year survival rate of 5%.  Since I was a non-smoker and have always lived a healthy and fit lifestyle, it was a complete shock to me and my family.  You never really appreciate how blessed you are with family, friends, and accomplishments until the day you realize that it can all be taken away from you.

After completing 5 months of aggressive treatments, my cancer went into remission.  On August 31, 2011, I was touched by cancer for a second time with a recurrence in lymph nodes located in my chest. Today I continue to fight with the help of God and a new treatment plan.  I may have cancer, but cancer doesn’t have me.

On February 19, 2012, I will run in my first ever half marathon in Austin, TX with Team LIVESTRONG.  I live life under my own terms and remain focused on my strong faith in God and the things I love most: family, friends and helping those affected by cancer.

Matt EllefsonI am actively involved with the Lance Armstrong Foundation as a LIVESTRONG Leader and Imerman’s Angels as a Mentor Angel. I am also actively involved in my local church Cancer Life Group and call on patients at our local hospitals.
I initiated LIVESTRONG at School in Sioux Falls, SD with our first pilot project beginning in January 2012 and I am currently working with the Avera Cancer Institute (where my local oncologist resides) by keeping a patient journal with the goal of elevating the level of patient care and resources provided.

I have also recently become a LUNGevity Life Line Support Partner, offering support to those who have been diagnosed with lung cancer.

I love life, I love my life and I have a lot to live for.

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Research All Your Options

September 14th, 2011 - by admin

by Kurt Shull

This is the life of a cancer survivor.

My life started to change about a year ago. After a great summer of travels to Hawaii and Lake Tahoe with my family, it was time to get back to work and all the responsibilities of fall: my son starting 8th grade, my lovely wife getting back to travel for her job, etc… During this hectic time I started to have a nagging, dry cough.  I was also extremely fatigued.  I just chalked it up to a stubborn cold and turning the big “50” in the next few months.

To make a very long story short, I was diagnosed with Stage IV non-small cell lung cancer on Dec. 17, 2010 and life will never be the same.   Being a healthy, fit non-smoker just didn’t fit with what I knew of lung cancer.

I met with my Oncologist and we discussed what would come next.  Since I was Stage IV, I was told my tumors were inoperable.  This meant moving directly to chemotherapy (Carboplatin, Avastin and Taxol).  I had a rough 4 rounds of chemo and was very sick most of the time. I was to suppose to go through 6 rounds but I was too sick and depleted to continue.

In the next meeting with my Oncologist, she stated there is no difference in life expectancy between 4 and 6 treatments.  She wanted to know what I wanted to do next. I wanted radiation for tumors on my airway in the hopes to relieve the worst of my breathing issues.

I also wanted a biopsy for a clinical trial up at Oregon Health Sciences University .  She agreed despite knowing that my chances for a genetic match were only 3-5%.  The biopsy results came back and I was a match!  I started Crizotinib in early July and within 4 days I felt remarkably better.  In fact, I attended a family wedding the next weekend that those months before I wasn’t even sure I’d be here to see.

Crizotinib is now saving my life.   I believe if not for this drug, I would be pretty close to or already be dead by now.  This drug was approved by the FDA a couple of weeks ago as a targeted therapy for those with lung cancer who are a genetic match to take the drug. (Read the press release here)

Being a cancer survivor is all about the scans.  I received the results of the first scans a few weeks ago and for the first time all my tumors have began to shrink.  I have put on over 25 pounds since starting this new treatment and my breathing is so much better.

So far the side effects from Crizotinib have been minimal- infrequent diarrhea, minor visual disturbances (light tracers when going from dark to light). Cancer treatments are heading to individual genetic therapies and the breakthroughs that will be coming forth in the next 10 years will revolutionize treatments.

Let me finish by saying, I’m so thankful for being a genetic match for this drug, and for the love I have received from my family and friends throughout this journey.

I have learned you have to take matters into your own hands and research all of your options.

Nobody knows you better than yourself- trust your instincts, ask questions until you get answers you understand, and never, ever give up HOPE!

Kurt is a stage IV lung cancer survivor.  He is also a LUNGevity lung cancer support buddy, making himself available to those newly diagnosed to offer encouragement and hope. For more information on becoming a support buddy or being matched with a survivor/caregiver support buddy, email kbrown@lungevity.org

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Why We Got Involved with LUNGevity

September 6th, 2011 - by admin

by Elizabeth Abrams

When asked why we got involved with LUNGevity Foundation, our answer was simple: Dad.

Our father, known to most as “Big Al,” was diagnosed with stage 1 lung cancer last September.  Despite the fact that in medical terms, early detection was a huge relief, the diagnosis was still devastating to our family.

Needless to say, with heavy hearts we rallied together to come up with a way to “fight.”

Courtney and I learned of LUNGevity Foundation and its annual Breathe Deep D.C. walk a short time later. We immediately formed a team, with close family and friends, and began fundraising. With the support of those around us we walked around the National Mall on a cool November morning, with more than 1,500 other lung cancer fighters and survivors. After this extraordinary, yet emotional experience, Courtney and I felt the need to “do more.” The walk was so personal to us, for the obvious reasons, but seeing how many other lives the disease has affected, solidified our passion to do whatever we could to help.

We found out about the D.C. Young Professionals Group through LUNGevity Foundation, and decided this was our chance. We joined a group of young professionals, dedicated to raising awareness and money in hopes of one day curing lung cancer. After deliberating on plans of action, we came up with one particular idea that ended up being a huge success.

Courtney called her good friend, co-owner of George, an upscale and modern bar in the heart of Georgetown, and asked him if we could host a fundraiser for LUNGevity. He enthusiastically agreed and on Thursday, August 18th George was packed, hosting the “Run for your Lungs” event.  Surrounded by other members of the Young Professionals Group, our family and friends, we were proud to be a part of doing something important. With the help of the $5 “suggested donation” we collected at the door, and the generosity of all the guests, we surpassed our goal and raised a whopping $2,000 for the foundation.

After hosting such a successful event, that allowed us to have fun while bringing attention to a great cause, Courtney and I are excited about the future of the Young Professionals Group and how we can help in the fight against lung cancer.

More information on the LUNGevity DC Young Professionals Group:

Who We Are:

A group of young professionals who are interested in networking both professionally and socially while contributing to the mission of LUNGevity Foundation.

Our Goals:

To increase awareness of LUNGevity Foundation’s mission and vision.

To host fundraising events on behalf of LUNGevity with community partners.

To promote volunteerism and encourage involvement of young professionals.

To provide networking opportunities of young professionals.

Get Involved! Contact Anna Pugh, Development Coordinator, at apugh@lungevity.org

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