Archive for the ‘Lung Cancer’ Category

Susan C. Mantel

ASCO

June 13th, 2013 - by Susan C. Mantel

Back a few days now from the always intense American Society of Clinical Oncology (ASCO) annual meeting in Chicago, and I’ve been reflecting on the take-aways for lung cancer from all of the presentations, posters and discussions.  There weren’t major breakthroughs for lung cancer patients, but there was a lot of energy and forward momentum and I am feeling really positive about how much attention is being paid (finally!) to people with lung cancer.

Here are three things that particularly struck me:                                   

  1. There was more interest in lung cancer than ever by the attendees. The poster session the first day, where almost 170 different research project results were displayed, was so jam-packed that I could hardly walk through to see all of the information.  The oral presentations and the education sessions also had amazing numbers of people listening, learning and engaging—definitely more than I have seen in my previous seven ASCOs.  People attending ASCO included scientific researchers and pharmaceutical/biotech/device, etc. companies, but also many, many practicing physicians who are just trying to get better at treating their patients. ASCO seems to be doing an overall better job of providing meaningful sessions for this third group, and the breakthroughs we’ve already seen HAVE to be understood and implemented by all doctors treating lung cancer patients, or we will not see an increase in overall survival of the disease. That brings me to my next take-away.
  2. There was a LOT of research information presented on lung cancer.  One major area of focus was consolidating the knowledge we have— looking at research from the past several years and anything new, how do we sequence or combine surgery, radiation, chemotherapy, targeted therapies in the most effective way? How do we treat different sub-populations, like the elderly, most effectively.  Is there enough research in these areas to make a decision, or do we keep doing more studies? One conclusion relates to the elderly.  We know older people can have vastly different states of health and disease, but treating decisions have often been made by age group as a whole. There is now evidence that age is NOT the number to use for deciding to provide certain chemotherapies.  Elderly patients have to be fully evaluated on health status too, and, if your doctor isn’t doing this, demand it or change doctors.  Another standard of care with tons of evidence to support it, but with uneven implementation around the country—molecular testing of tumors.
  3. The other big category is new treatments in early stages of research.  Immunotherapy and heat shock protein (HSP) inhibitors were two really interesting areas, but the research is still in its first stages. Therapies for additional targets, like RET, ROS and MET, are also in development, as are second or even third generation targeted therapies to deal with EGFR and ALK inhibitor resistance. Early results are exciting, but the only way we will move forward is through clinical trials.  With the really small populations affected (less than 1-2% in some cases), the research community is going to have to change how they offer enrollment and probably exclusion criteria too, or they will never get enough patients involved for us to get answers to these questions.  And patients and caregivers are going to have to be really informed going into their appointments.

Exciting times in lung cancer, and to keep the momentum going for the best care for people with lung cancer, we all need to get informed, get involved, and stay committed.

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Not My Mom

May 22nd, 2013 - by admin

Janet Hollands was originally diagnosed with lung cancer of two etiologies in August of 2011.  She had a lobectomy, stereotactic radiation and chemotherapy.  At that time her 15 yr old daughter wrote a poem about cancer that was published in her school journal.

This March, Janet was once again diagnosed with two “nodules” in her right lung.  When she told her daughter, now 16, she wrote the poem below.

Janet says her daughter Bailey is her inspiration to beat lung cancer, as many times as she has to.

Both Janet and Bailey have agreed to share this poem with our readers.

 

Cancer

The word struck me with an unknown fear

Cancer

Why did my mom get diagnosed with this?

I don’t ever want to have to give her that one last hug or kiss

Cancer

The doctors said it with such casualty

Like “oh this may just hurt badly”

Looks around the room, what’s this mean?

My sister hugged me and tears came to my eyes

I stayed as strong as I could

Only letting out silent cries

Cancer

How to react?  Nobody knows

It’ll be okay, that’s what everyone hopes

After all what are people supposed to say

about a nice lady, a savior in scrubs

That now has a thousand doctors, and only

gets paid in hugs

Cancer 

She fought it long, and she fought hard

Cancer left, but left her scarred

Everyone was all smiles

She had been on the cancer free road

for miles and miles

Until she wasn’t

Cancer

It came back with no invitation, no warning

Unexpected and unwanted

She sat me on the couch with a look

I hadn’t ever seen

The doctors say its back, you see?

I’m not cancer free anymore, so it seems

She promises she’ll be there through it all

I believe her, she’ll be the one who

does my hair at prom

She’ll be at my graduation, my wedding,

she’ll be at it all

Cancer

Not even that could bring her down

Not my Mom.

Not, Cancer

by Bailey Davis age 16

_______________________________________________

 

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Team Making It Jake

April 11th, 2013 - by Liz McDonough

It’s great to be a part of Run As One every year. It brings it around full circle—everything my family and I have learned about lung cancer and our commitment to helping other families facing the disease.

My brother Don and I lost our Dad to non-small cell lung cancer in 2009. Dad was diagnosed too late because, as a non-smoker, it didn’t occur to any doctor that he could have lung cancer. My Dad led a very active and healthy lifestyle; however, he developed an irritating incessant cough. Almost a year and several visits to different doctors later, he was diagnosed on Halloween 2007 and was told to get his affairs in order.

I had an opportunity to learn a little bit about lung cancer during my time working in DC for Congressman Clay Shaw, who spoke openly about his own lung cancer and the treatments he received. One of his treatments included a “miracle drug” called Tarceva. Dad also went on Tarceva, which he responded to very well and we were so grateful to have him with us for 18 months more than we ever expected. During this time, my Dad met and became friends with Admiral Phil Coady, a co-founder of the Lung Cancer Alliance, which he formed after his own diagnosis with the disease.  The Admiral was a real sounding board for Dad in a way that we couldn’t be, despite all of our love and support for him.

The willingness of both of these survivors to provide guidance and to share their experience was so important for our dad’s quality of life. It’s also one of the reasons Don and I are so committed to raising awareness and money for lung cancer research.

We’ve been involved with Run As One from the get-go. My sister-in-law, Robin, is a surgical physician’s assistant at Memorial Sloan-Kettering Cancer Center and learned of the event through work. We are blessed to have an amazing group of friends and family who participated in the first Run As One in April 2008 as “Team Making It Jake”— in honor of our Dad. That November, Don ran the ING New York City Marathon to benefit lung cancer research and the Thomas G. Labrecque Foundation. Don successfully raised over $30,000 for lung cancer research, way more than his original $2,500 commitment. Not bad for a first-time fundraiser!

“Team Making It Jake” has participated in Run As One every year and we’re looking forward to this year’s event. We’re especially pleased that Labrecque and LUNGevity are partnering on the event again—lung cancer is so big and we really believe in having everyone working together. This year Don and I are also looking forward to raising more funds as co-chairs, together along with Andy and Erin Stern, Shannon Broder and John Rigos, at the second annual SPiN Ping Pong Event. This is another joint Labrecque-LUNGevity event coming up on June 5th.  We are doing this to honor Dad, while supporting an organization that has had a direct and positive impact on our lives.

Our family was completely blindsided by this disease and it took a good couple of months to even be able to process this enormous change in our lives. We don’t want another family go through the pain of losing a loved-one like we did. It is so difficult to witness a parent suffer and not be able to help. If we can do something to avoid that agony, we will do it. This is personal for us, and lung cancer needs to get the attention it warrants. Through great organizations like LUNGevity and the Thomas G. Labrecque Foundation, we’re on the right track.

Don and I believe that people are becoming more and more aware of lung cancer through these types of organizations. Lung cancer can happen to anyone, and the stigma of it being the ‘smoker’s disease’ is hopefully disbanding. The faces of lung cancer are changing; and more attention needs to be recognized. With that in mind, events like Run As One and SPiN are a great way to support lung cancer research and have some fun doing it. We’re focused on doing our part to help another family avoid going though what we went through. And we look forward to seeing everyone in Central Park on April 28!

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Nurse Navigator Tammy Allred

December 6th, 2012 - by admin

Tammy Allred knew the moment she began working with oncology patients that she had found her calling.  The North Carolina native, originally from Chapel Hill, has been working in oncology for 29 years and loving it. Her official title is Sarcoma and Thoracic Oncology Nurse Navigator.  She is one of two lung cancer nurse navigators at the UNC Cancer Center and she is the first person a patient sees.

Allred works to provide educational materials to help patients understand their disease.  She supports and educates them during their treatments and helps them avoid all obstacles that they may face during their treatments.  She facilitates their appointments and maintains contact to make sure they don’t get lost in the care continuum.  She also makes referrals they may need to obtain medications and makes sure their insurance needs are met.  If patients are not insured or have special needs, she makes sure they are referred appropriately to get the help they need.

We asked Allred what recommendations she would give to someone who’s just been diagnosed with lung cancer. Her reply: “Do NOT Google anything about lung cancer! There is too much inaccurate information out there.  Go to a medical oncologist who is experienced in lung cancer.  Get a second opinion if you do not feel comfortable with what you are hearing.  Do not listen to old wives tales or compare your lung cancer to other types of cancers.  All cancers are not treated the same.  All cancers have different outcomes.  To sum it up, be a self-advocate. Lung cancer has changed so much over the past several years and continues to change in a positive manner.  There IS hope.”

There are also many misconceptions when it comes to lung cancer.  We asked Allred what she thought the biggest misconceptions the public may have about lung cancer.

“The biggest misconceptions are that lung cancer is a smoker’s disease and that there is no hope if you are diagnosed.  It IS NOT A SMOKERS DISEASE.  Lung cancer can happen to anyone with lungs.  And there IS hope.  Things are changing every day to improve the quality of life for people with lung cancer and treatments are getting better. No one deserves lung cancer and patients should not be blamed or feel guilt for having lung cancer.”

Allred has worked in different aspects of nursing from the med/surg floor, giving chemotherapy, hospice, clinical trials, and now with lung cancer patients.  She says she’s finally doing what she loves, combining all her experience in all these areas and navigating patients thru all the phases of their lung cancer experience.

She’s been working with the North Carolina LC Partnership for the past 5 years and loves doing outreach and education and raising awareness about lung cancer and correcting the misconceptions and stigmas about the disease.  She also mentors new navigators and shows them how to find resources that will help their patients.

One thing is clear to us: Tammy Allred puts her patients first.  She recently was nominated for Best Lung Cancer Healthcare Provider for the month of November on Facebook and won.  LUNGevity is glad to honor and recognize her passion and dedication and care of those affected by lung cancer.

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Jill Feldman

The Critical Battleground Community ~ Young Voices

November 19th, 2012 - by Jill Feldman

Leading up to the election and for a few days after I was obsessed with the absurd amount of time, energy and money spent on the presidential election. I just kept thinking, all that campaigning and now what? What if 1/4 of those resources were spent on raising awareness or money for lung cancer research? Do 1/4 of Americans even know that November is Lung Cancer Awareness month?

 Like most Americans, I followed the election the night of November 6th as different states were colored red or blue. I was particularly interested in the battleground states and the significance of winning those states for each candidate. It was also interesting how much emphasis was put on the importance of people getting to the polls and voting, especially for certain groups. The young voters, the future of our country, played a key role in the election.

Lung cancer isn’t much different. The opposing candidates are Lung Cancer and Life, and there are various ‘battleground’ communities in this campaign including, government, general public, medical professionals, patients, and caregivers. Young voices also play a critical role in this campaign.

  • The government has already shown us that lung cancer is not a priority, therefore, Lung Cancer wins that community.
  • Lung Cancer wins the general public because just like those who choose not to vote, the majority of society, for various reasons, chooses not to take a stand against lung cancer.
  • The medical community is split because there are still many medical professionals that perpetuate stigma and/or believe the disease represents nihilism.
  • Life clearly wins the patient and caregiver community, although there are still patients and caregivers that feel shame or are too sick to advocate for themselves, their disease and change.

That leaves the young voices — the critical battleground community that could compel others to rethink lung cancer. This is a community that can incite change by caring about the WHAT (what are we going to do) not the HOW or WHY (how or why someone gets lung cancer).

There is an insightful group of teenagers in the young voices community who have chosen to vote Life and lead that campaign. Deerfield High School, in Chicago’s northern suburbs, organizes School Chest each year, a three-week-long charity drive that unites students, teachers and residents behind an organization with a cause they believe in and connections in the community. LUNGevity Foundation was chosen as the 2012 beneficiary.

I can’t put into words the respect and admiration I have for these students. They recognize the impact and reality of lung cancer. They understand that we need to get past the blame game, and they know that anyone can get lung cancer. These teenagers are proud to stand up to lung cancer, and they do so with determination and conviction. They vote Life!

As a lung cancer patient and Deerfield mom of four, I am touched and completely awed by the students of Deerfield High School. They will help give lung cancer a much needed voice, and theirs will be loud. There won’t be a stigma to erase if this community understands the REAL story. They will make a difference — and that gives me so much hope for the future – for Life!

You can watch these amazing teenagers in action, and donate to their tireless efforts, by visiting www.lungevity.org/schoolchest & www.facebook.com/schoolchest2012lungevity.

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