CindyA

Laralyn,
 
Statistics you say!  They are indeed sobering, so much so, that I fell prey to their gloominess.  I studied a lot about statistics and promptly forgot most of what I learned when diagnosed.  Dr. Stephen Jay Gould reminded me that a statistical projection may not apply to me.  Here is a youtube of his essay The Median is not the Message that you might find helpful in putting statistics into prospective.  
 
Clinicians and practitioners are well intended but cancer survivor statistics are not very precise indicators.  Remember, that you are "in the variation" as an individual cancer survivor and the aggregation of data to determine a mean or median may be of academic interest but it does not necessarily pertain to your situation. 
 
Stay the course.
 
Tom

Hi Rhonda, 
Welcome to the LCSC message boards fellow Texan! I'd like to personally invite you to the Dallas HOPE Summit that LUNGevity will be hosting February 27th. You will have a full serving of HOPE and talk to others in the area who are going through similar situations. It's free, save your seats by registering here: http://www.LUNGevity.org/DalllasHOPE
 

I had VATs surgery and although I won't tell you it was a walk in the park, it was not the worse thing I have ever experienced either. I was in the hospital for 3 days (due to the fact my blood pressure dropped very low) but as for the surgery itself it went very well, I did well at home with minimal assistance and was up and out of the house within the week. God be with you as you undergo your surgery and your recovery.

I'm signed up too. Looking forward to meeting other LUNGevity folks there. Barb J
Sent from my iPad using Tapatalk

PET scan revealed no active cancer anywhere in her body.  Nothing lit up, not even the old tumor.  Next task is to get rid of this "lung specialist".

Kelly Marie,
 
Welcome here!
 
Choosing to be positive is so very important.  I discovered this while reading a blog 8 years ago and it was life saving for me.  A radiologist diagnosed at stage IV was in treatment enduring the same side effects as I did but he was swimming laps everyday, involved with his children, and enjoying life.  I was depressed and bitching and moaning about side effects.  Then I thought, what's the difference here.  He's enjoying himself and I'm not.  From that day, I realized I could change my attitude towards treatment and life.  Just a simple decision was all that was required. 
 
I now believe if one chooses treatment, one is choosing life and one can choose to enjoy the life treatment provides.  Good outcomes come from positive attitude.
 
I had Tarceva but in the early days before doctors knew why it worked.  Testing for genetic mutations was not discovered for years after Tarceva was FDA approved.  Doctors now know that Tarceva targets the EGFR mutation that is present in some subtypes of NSCLC.  But, it wasn't present in my type.  Nevertheless, I've read very good reports for folks who take it when their tumor has the EGFR mutation.
 
Here is Dr. Sequist's video on lung cancer mutations posted in Lungevity's Lung Cancer In the News section of our forum.  
 

 
Stay the course.
 
Tom

have you tried or thought about smoothies maybe? with some protein powder mixed in?? will help with weight loss and possibly avoid cachexia by gaining some mass back to your frame because of appetite conditions??

Beth,
 
Wow have I experienced this problem.  When I get a normal cold, it lasts forever going to my chest and I have the same problems your dad has.
 
Here is what I do.  Sleep in an elevated position using a bed wedge pillow or sometimes in my reclining chair to ensure I'm elevated enough.  Use a CPAP machine to force air into my lungs, sometimes on concert with oxygen when things get bad.  Steam up in the shower after taking my morning inhaler (this steam seems to clean our most of the gunk).  Keep a humidifier in my bedroom.  Finally, I rest and restrict my getting out of bed.  I've been dealing with these nightmare chest congestion conditions for nearly 12 years and sometimes I'm down for more than a month.
 
Stay the course.
 
Tom

Hello All,
I'm glad to be a part of this group.  I heard about it on a FB post and thought it would be beneficial for me.  I was diagnosed in September with non small cell and they removed my left lung on October 19th.  I am now in treatment once a week for 4 months.  The chemo has been very challenging and have been in bed most of the time.  I live alone and grateful that I have friends that at times take care of me and feed me.  After my chemo, I have a month of rest, then 6 weeks of radiation.  That I my fear, because there is a possibility that I might be oxygen dependent.
My faith is strong and I am looking for possible groups and persons who would want to connect and share stories and recoveries.
Thank you.

Welcome Tess.  Glad you found us. I am so glad that you were tested for the
mutation and are responding so well.   This is a tough disease but many of us
can live a good life.
Please don't hesitate to tell us what is going on, we have been through this and
know it is good to talk to get through it. 
Hope you get to live as l have been fortunate to. 
Keep us posted.
 
Donna G

Tess,
 
We never tire of hearing about scans, treatment and side effects.  We understand what you are going through because we've been there and done that.  Wonderful to hear about Xalkori's affect on your ALK translocation.  Molecular profiling is a huge improvement for some of us in the lung cancer community and it looks like you may be one of the fortunate few.
 
Look forward to meeting you at the DC Hope Summit.
 
Stay the course.
 
Tom

Hi Katie, 
 
Welcome to the Lung Cancer Support Community Message Board. I am happy to read that Jeff is responding well to Tarceva. Thank you for sharing your story with us. You mentioned that you would like to collaborate with other in your area. LUNGevity has a wonderful National HOPE Summit every May in Washington, D.C. I know that is a couple of hours away from you, however its the perfect opportunity to meet other who know exactly what you are going through, learn about the latest in treatment options and most of all be filled with hope! LUNGevity offers a limited amount of travel grants to new attendees. I hope you will apply and I look forward to meeting you! http://lungevity.donordrive.com/index.cfm?fuseaction=donorDrive.event&eventID=583
 
Cindy

Read this GREAT review from GreatNonProfits
http://gr8np.org/go/8Dd
 
"My first Hope Summit was in 2014. I left with such hope and inspiration and couldn't believe the amount of survivors I got to meet in person. Lungevity not only helps to connect other survivors to give hope and inspire us to keep fighting but they also are the number one non-profit that donates towards lung cancer research. Research is so critically needed for such an insatiable, deadly disease like this. I thank Lungevity staff for their deep dedication and all they do to raise awareness about lung cancer and help survivors live in the process."

Maral,
 
Welcome here.  You've got a lot on your plate!
 
Denzie and Cindy have suggested informative links to read into your father's lung cancer.  When they biopsy his tumor, ensure they check for the possibility of mutations.  See this video that explains the importance of mutations and the emerging treatments that have been shown to be very effective in treating non small cell lung cancer patients - 
 
Stay connected with us.  There are many here that are long tenured lung cancer survivors and we are here to help.
 
Stay the course.
 
Tom

Stage 4 lung cancer doesn't have to be an automatic or immediate death sentence. Mine was diagnosed 5+ years ago. Do you know if they tested for mutations? Also, there are several types on nsclc. Do you know which he has? With more info we can guide you to better recommendations.

Donna,
 
It is my experience that the word normal almost never applies to lung cancer.  A medical oncologist is the quarterback of your treatment team but as test results reveal the type and stage of your lung cancer, others will likely joint the fight.  Have you had a biopsy yet?  Lung cancer comes in different types, and importantly, a treatment plan (including surgery) cannot be devised until your type and stage of lung cancer is known. Here is a link to get you read in to your disease.  Pay particular attention to your doctor's explanation of stage and type at your next consult - http://www.lungevity.org/about-lung-cancer/lung-cancer-101
 
As for trials, I would think the type and sage would need to be determined before a decision could be made to include you in one.  At my treatment center, there was always a discussion about trials and literature was available to read about them.  But, I would think it premature at this time to mention a trial.
 
You'll have many questions and feel free to ask away.  Many here have been where you are today, and guess what?  We're still here!
 
Stay the course. 
 
Tom

Living with Lung Cancer
Sherry Guarneri suffered a multitude of physical effects from her lung cancer treatments including hoarseness in her voice from the chemo, losing her balance, losing her hair, migraines, nausea, dizziness, suffering from anticipatory sickness, losing thirty lbs., thrush and the list goes on and on of the things that she lost; except for her sense of humor and her love for her family.
Sherry was diagnosed with stage IV Adenocarcinoma with metastasis to the brain, on February 9, 2013. She was an Emergency Room Technician at a local hospital and had hurt her back helping a patient. The pain in her cervical bones would not subside and finally an emergency room doctor encouraged her to have an MRI.
She was stunned by the diagnosis. Sherry was under forty-five with a 1 and a half year old and two older children and was thought to be in great health. How could this happen? She learned that lung cancer can happen to anyone with lungs, whether or not they had a smoking history.
She remembers feeling ashamed at first after her diagnosis. At first she cried, then she got angry at the prognosis she was given. Eventually, she became empowered.
“I wished there were people like me I could talk to. There wasn’t anyone like me; I was in great health; I was young. The Sociologist said the only support group was for breast cancer, which was clearly ‘a different cancer than mine.’ But I could call someone. That wasn’t a help. I needed more – a book, perhaps. So, I wrote my own. For people like me, who were young, never thought this would happen. It changed the course of my life.”
She wants to encourage other survivors to become advocates to help raise awareness about this disease.
“Write a book about your experience (I had SHuzie published regarding my lung cancer experience for free on Amazon and a portion of Amazon Smiles will be targeted for LUNGevity); write an article for your local newspaper; run marathons; share information about lung cancer via Facebook or run a lung cancer support group.” Sherry is also trying to get legislation passed to approve lung cancer awareness license plates in her state.
When asked what advice she would give to someone newly diagnosed, Sherry says to be an empowered and educated patient. Ask questions about your treatments and your care. Confide in your doctors and nurses and have a loved one advocate on your behalf.
“I want people to know that having any kind of cancer is not an automatic death sentence. The best thing about this cancer is I get to take care of me for a change. I get to literally slow down and smell the roses. I could die tomorrow; but so could my neighbor or my husband. We should appreciate the moment. I am LIVING with lung cancer.”
Feeling supported is also very important in the lung cancer journey. Sherry didn’t find a support group in her local community but she did find a national lung cancer community this May at the LUNGevity HOPE Summit in Washington DC.
“When I left the 2014 LUNGevity HOPE Summit my thought process had changed. I was happier and I was mesmerized. I felt accepted. I felt loved. The HOPE Summit is a room of my people. They are my people. I have never felt so understood by patients and my husband never felt so understood by caretakers of the LUNGevity HOPE Summit.”
For more information about LUNGevity, please visit www.lungevity.org

Hi Diane! I'm so glad you are here too! 

Watch Dr. Lecia Sequist from Mass General in Boston, explain ‪#‎lungcancer‬ mutations.
 
https://www.youtube.com/watch?v=e9gTMptexi4

Watch 10 year lung cancer survivor, Linnea, talk about clinical trials https://www.youtube.com/watch?v=FKEW1CZbt4w

Watch 10 year lung cancer survivor, Linnea, talk about clinical trials https://www.youtube.com/watch?v=FKEW1CZbt4w

Hi Marie! I am so glad to read the good news. I truly hope the nurse navigator will steer you in the right direction. Please let us know if you have any questions. Also if your dad would like to talk to a mentor please let me know. We can connect him to someone who has experience with a similar situation. It's called the LifeLine Support Program: http://www.LUNGevity.org/LifeLine
 
I look forward to you next update.
 
Cindy

Berry,
 
I can only answer based on my experience.  In the course of many CTs, radiologists reported the growth and reduction of many "nodules" in my lung and other organs.  This phenomena was especially acute if the interpreting radiologist was reviewing my scan for the first time.  Then all kinds of nodules were reported in lungs, liver and other organs.  A new radiologist interpretation was a nightmare to my oncologist who needed to wade through previous reports to separate the wheat (this is new) from the chaff (seen this before).  Also an issue was my general unfamiliarity with metric measurements.  I'd freak out on learning a previously discovered nodule of 2 mm grew to 4.6 mm before I converted these measurements to inches.  Then I'd realize how small these nodules really were - 2 mm = .0787 inches; 4.6 mm = .181 inches.  Neither of these dimensions can be easily discerned on a standard ruler.
 
Yes I've had this experience.  Yes catching lung cancer early is essential.  If this pattern continues, I see a PET-CT as a future test.  That will characterize the nodule as cancer or something else.
 
Stay the course.
 
Tom 

This is superb!

Watch Dr. Lecia Sequist from Mass General in Boston, explain ‪#‎lungcancer‬ mutations.
 
https://www.youtube.com/watch?v=e9gTMptexi4