Kberns

Just wanted to say that you and your husband are not alone. There are many of us here fighting the same battle. The Oncologist will play the major role here and will answer all your questions. Write them down before the appointment because it does become very overwhelming that first appointment.
Please come back with questions or just to vent. We are here for you and your husband.
 
Karen

By Kenneth Lourie
 
One of my greatest fears (or regrets, if I am in fact the cause of my own decline) is that my own stubbornness, stupidity, “male blockheadedness” and/or refusal to believe/pay attention to signs, symptoms, indications and instructions/health advisories from my oncologist about my health will lead to my premature death. Not that a stage IV, non-small cell lung cancer diagnosee originally given a “13-month to two-year” prognosis still alive and writing – among other activities – five and a half years later should think it “premature” after so far outliving his original prognosis; nevertheless, having received this diagnosis at age 54 and a half has caused me to still characterize my death as potentially premature given the fact that both my parents lived well into their 80s. Their long life had led me to believe that I’d live just as long. Hearing what I heard from my oncologist back on February 27, 2009, at the initial Team Lourie meeting changed my thinking, however.
Yet here I sit, not exactly “ensconced” in velvet as George Costanza loved, but alive and reasonably well, sitting “in the catbird seat” (to quote the late, great, legendary Red Barber, radio voice of the Brooklyn Dodgers {1939 -1953} and the New York Yankees {1954-1966}.) “Sittin’ pretty,” in the “rocking chair” are similar phrases of a type of good fortune. And considering my original set of extremely unfavorable circumstances – terminal cancer, inoperable, incurable, “perhaps you ought to take that trip you always dreamed of;” – I’m about as fortunate as one could be: sitting, rocking, standing, anything, in or out of the catbird seat or any other seat for that matter. Lucky doesn’t begin to summarize my amazing good fortune. And as much as I’ve done to affect my circumstances: diet, supplements, minerals, vitamins, non-western alternatives, holistic ideas, I certainly don’t want to stop now. (I grade myself a “B” on the how-good-I’m-doing scale; those who know my history would give me a higher grade, however.) But as live on, I try to pay closer attention to what my body is telling me, given that it may have outlived its ability to absorb the many poisons and toxins it has absorbed over these past five years having been subjected to almost non-stop chemotherapy, every three weeks – save for a 12-month break when I was able to take two pills a day instead.
After all this time though, it’s still my nature to ignore, shrug off and even minimize some of what I feel and attribute it to age. (Believe me, it’s a lot easier than believing it’s the cancer.) I mean, I’m not getting any younger, and while the cancer is presumably impacting me in some way, I don’t want to take my above-average health for granted. Nor do I want to worry myself into an early grave, either. But if I’m not proactive and worried – and attentive to details, perhaps that innocence and hopefulness may very well be my undoing; even though I’m not ready to be undone. Regardless of what I do, or how I do it, sometimes I feel like my life is a done deal. And that’s what scares me – to be the victim of my own circumstances.
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Do you have fears you struggle with?
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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(link is external). (key word, Lourie) Read Kenneth Lourie’s 1st LUNGevity blog post & bio
 
http://lungevity.org/support-survivorship/get-connected/blog/scared-hopefully-not-to-death

Hello Everyone,
 
I hope to see you all at the DC Summit May 1st. I just had a scan last week and still stable. I was diagnosed with stage 4 lung cancer in June of 2009. After IV Chemotherapy and radiation I was put on 150 mg of Tarceva in Jauuary of 2010, that was fve years ago and it is still working.
 
Take care,
Don

Hi Everyone, 
 
My name Is Ryan and i thought i would share my story. 
 
Im 32yrs old, fit, active and healthy guy living in Australia and received the devastating news on 4th of Nov that i had stage 4 lung cancer of the NSCLC type. 
 
I need to go back a couple of months to to explain what was happening in the lead up to my diagnosis. I am asthmatic and have been since i was young and during the year i could feel that my breathing was tight and i knew that something was not right. I went to my doctor a number of times and was prescribed more and more asthma medication, no change.
 
After months of this and numerous visits to this doctor i was not getting anywhere and really wanting answers so i changed doctors. At about the same time i got the Flu and was extremely run down. Presenting these symptoms to my doctor she decided to send me for an xray. I  got a call shortly after the xray with the news that i had pneumonia!! Wow i thought, how does this happen. I mean i knew i was burning the candle at both ends with work, exercise and was run down but don't really old people get pneumonia?
 
So i started to rest a little to allow my body to heal and waited to have my follow up xray. In this time i noticed my breathing still not improving and as i was training for a Crossfit competition coming up this was concerning. It had been about 2 months since my first xray and i was really struggling to breathe on a daily basis. I went back to my doctor one last time and we had a plan that if i could not get in with a specialist then i was going to admit myself to hospital. 
I had my xrays which showed no improvement. this was the first sign that there was something not right. This was monday morning and so my doctor arranged for a CT scan later that day. 
 
I had my scan that night and while waiting around after the doctor there was asking me a heap of questions "have i been losing weight? have i this, have i that". This didn't give me a great feeling either and i knew it was something more serious than pneumonia.
 
On wed that week i got in to see the specialist who looked at my scan and said "it could be something viral, or it could be something really nasty like cancer". She didn't want to say and so i was off for a biopsy now on friday to find out for sure.
 
Biopsy day and im in hospital surrounded by elderly people and doctors coming in to check on my info before the operation and all i heard was "what are you doing here, you looking too young and fit to be here". To which my response was "you're the doctor, you tell me". Again this didn't give me a good feeling.
 
The weekend came and went and i was expecting my results the following wednesday. I was on my way home from work tuesday night and was speaking to my parents and saying i havn't heard anything so no news is good news, how wrong i was.
 
I had a call coming through from my specialist who sounded distressed. She asked me if i was with loved ones, i was with my wife. So she cut to the chase very quickly and i heard the words that i never thought i would hear......You have lung cancer! Wow! She had arranged for me to see an oncologist the next morning at 9am which i was very grateful for and thats the only reason she rang was so she could let me know and get me in with the oncologist asap. 
 
My wife and i sat on the bed and said the words out loud and just cried. Why and how were the first things that popped into my head then the fact that my wife was 10 weeks pregnant hit home hard too that would i be around to see my first child? So many things to think about and right now so much unknown. 
 
Telling family was the hardest thing as it made it very real. I am the youngest of two and i would say that im the rock of the family. Im the young brother who turned his life around around from being really overweight to being a healthy, active, strong motivated person who never smoked a day in his life too. 
 
Wednesday morning came and my wife and I head to the oncologist where he delivered the official news that i had stage 4 Adenocarcinoma lung cancer in a non smoker. We spoke a little about treatment options and that he was getting my biopsy tested for the particular EGFR receptors for treatment but said that we were looking at "managing this for quality of life rather than longevity of life"! Wow that really hit home deep. 
I had about 10 small tumors in both lungs and a main mass in the lower right lobe which was about 2inches in size. 
 
So we left that day knowing only that we had to wait a week or so for the test results and would then go from there. My oncologist did say something to me which really helped my deal with the situation and really set our mindset, he said "the sooner you accept you have cancer the better off you will be". I took that day and thought about what he said. I accepted that i had cancer but in no way would i accept that this would control my life and determine how and when i exited this earth, i was going to live on my terms. 
 
We changed my nutrition instantly to cut out all processed foods and got back to basics. Organic vedgies and meat, no dairy and sugar and made sure that i was giving my body and immune system everything it needed to be fully healthy to take up the fight. Nutrition i can not say enough about and i believe it has changed my life for the better. I wish i did this 15 years ago. 
 
We got the test results and the great news that i had one of the mutations for the EGFR treatment through TARCEVA. 
 
Within days of starting TARCEVA i noticed my breathing improving. My breathing was so bad that i was out of breath just talking and by the end of the day was so tired cause every breath was a struggle so this was pure relief. 
 
the days went on and i kept on improving. I then started to be able to exercise again. It was slow at first but each day and each week i was able to breathe a little better and so i was able to do a little more. 
Im a keen cyclist and i found this a great way to get my fitness up without putting too much stress on it. My oncologist told me that my days of 100km + rides were over with............really?! Within a month i rode 107km and felt great. (I love proving people wrong). 
 
Within two months i was riding 3 times a week, back training at the gym and feeling better than i ever had cause my nutrition was so good. 
 
My next CT scan to see how the progress was going was scheduled for 2 months after i started my treatment. I knew there would be some improvement cause my breathing had improved so much and i was feeling so good but i had no idea how much. 
 
Getting the CT scan was a very nervous day until i read the report. "Almost all of the small tumors had gone completely and the main mass has shrunk in excess of 50%"!! This was the best news ever and just spurred me on to keep improving my nutrition and health and fighting this thing with everything till its gone completely. 
 
So its only been 3 months since starting my treatment and my new way of life which is every facet from nutrition, mindset, gratefulness to stopping to enjoy the little things and i only see things getting better. I only see a future with me having absolutely no cancer at all and having gained so much from this that i can hopefully share my story and potentially help others or even if i only help my kids (which my first is due on the 5th of July) then i would have done everything i can.
 
Im sure there will be ups and downs in the road ahead but for now things are great and im going to focus on the now.
 
thanks for reading my story and if there is anything anyone wants to know please let me know.
 
Take care and keep smiling  
 
Ryan 
 
 
 
 
 
 
 

Good Morning Everyone,
                                        Lovely sunny  blue skies here in Airdrie this morning,temps hovering around freezing,however,Saturday sees me jetting off to the Canaries for a week,I am escaping the Scottish winter by visiting Gran Canaria with Liz.It would be just lovely to find a apartment to buy there and skip out Scottish winters in a more permanent basis,maybe my Lottery ticket will come up this week LOL.
    I have just dropped Liz off at Airdrie Station,she is off to a meeting with her employers in Edinburgh today,meanwhile I am off to Glasgow to meet up with my gym buddies for our weekly lunch date in the Admiral Pub,one of the highlights of my week,I really enjoy the banter,good humour and sorting out all the ills in the world,gosh if we could only rule the world,what a better place it would be for everyone LOL.
       I hope you are all doing well and enjoying life,bye for now.
      

Happy by Pharrell Williams.....works every time!!!

Hi Rose,
Welcome to LCSC,sorry to hear of your dx,I have to go back down memory lane to Oct 2008 facing my upcoming treatments for the tumour found in my upper right lung.Apprehesive is certainly a fitting word to say the least,I was to have neo-adjutant chemotherapy which was designed to shrink the tumour,which if successful would allow my tumour to be surgically removed.As you say all chemo regimes are different,mine was four cycles of cisplatin and vinorelbine,I have such a vivid imagination,my brain could conjure up all sorts of negative thoughts about what was to come and follow on from my treatments eg, my hair will all fall out and I would be violently nausous with the chemo,the surgery if possible,would be excruitatingly painful and leave me a breathless invalid,these thoughts and others no doubt LOL,had their grip on me.
    Well what do you know?, I sailed through the chemo,no nausea,no hair falling out,no fatique,it all went so well.I did follow all the instruction provided by the medical team supporting my ie using the mouthwash to prevent mouth ulcers etc,I did have one bout of constipation though which was blooming uncomfortable,however that was entirely my own fault,since I was'nt drinking enough fiuids as recommended.
     The surgery went so well too,post surgery my wound site did ache a wee bit,(Iam a Scot,but certainly not a Braveheart),to say my wound was painful would be stretching it a bit,although I did use it as an excuse to avoid housework when I got home for a while.
     Finally,I have to say I am still here,still causing mayhem with all my family and friends,my dark thoughts of a premature exit have dissipated,I am having so much fun with my life,looking forward to each new day.This is outcome is what I sincerely  wish for you.
     Best Wishes.
         Eric.

Thank you all so much, I am anxious to get the first round done ,Hoping I sail thru it with minor side affects. If my hair happens to fall out, it's ok, it's just hair, If I get sick and puke a few times,thats ok too. I will take the bad to get to the good any time. I know that god will walk me thru this journey as he did when I was da with the lymphoma, 2 years on feb.11 for remission. Knowing that there is no cure for this LC but it is treatable. I wish you all the very best and so glad to know that I am not alone on this journey. Thank you all for listening.  HUGS to all

Crossing my fingers! I look forward to your future updates.

Thanks Cindy & Randy! It is a nice feeling having people to talk to about this journey. I have to give up on the trials for now as I really put my health on the back burner chasing them. It was a bad experience because of the people I dealt with. There was no communication and I would carry by cell to the bathroom just in case they called. I hardly left home because I did not want to be in like Home Depot having that conversation with them. Then, weeks would go by and I would leave tons of voice mail but nothing came of it. This went on for months. Hopefully Mayo will be getting some trials back this year which I would not hesitate to go for. 
After one chemo treatment I am feeling great but with weird side effects no one mentioned to me. I can't stop eating and my energy level is extremely high. Thankfully I am thin so the eating won't hurt me too much!

like wise and glad to hear from ya keep posting......LOL and lifting!!

Hi all
  I am recently diagnosed with stage 2 sclc, and it has been a bit of a whirlwind initiation for me, as the diagnosis truly came in from "out of the clear blue", right after Thanksgiving, and I have been pushing things along, in order to get a course of treatment underway at a very tough time of year.

  I went in to my Primary for sinus infection, really. I thought I had mold allergies that had been haunting me all Summer long. On my third visit in, He ordered a chest xray, even though my breathing sounded good. It had just been going on too long without resolution.

 I'm sure others in here know that moment all too well.The one where you KNOW something is very wrong. They had me do a CT on my chest, right after they got the XRat back. I knew it wasn't good.
I also knew what that look in the Doctor's eyes meant when he finally came back into the room. 
  ..Not good things.

 So there it was. I have smoked, on and off, pretty much all my adult life. I was shocked....but not, really, either. You play, you pay. The only thing was to plow ahead and try to put the hammer to it.

 Like I said...whirlwind. MRIs, CT scans, numerous tests...Biopsies..and the bad news kept piling up. It was in my Pancreas. and in the left lung, too. Non operable.
  I felt like I was taking body blows at every step. And hell, I'm paying dearly for the priveledge, which made it suck not one iota less.

 Funny thing. I felt fine, outside of the annoying post nasal drip...until I got hit with the diagnosis.
 My Doc was more shocked than I was. I seemed to be in better health than I had any right to be. An old bull, destined to roll on for years to come.
  I was rarely sick, outside of an artery clog, ten years before. Normal for a fiftyish guy who did most things wrong and got lucky, genetically.

 Try and sleep with this hanging over your head. You can't.
 Mortality is a hell of a thing to wrestle with at two AM. Any time, really.
 But it likes to wait until everyone else is asleep. Oh yes...
 I was avergaing two hours a night, and feeling steadily worse.

But, I got into chemo.The dust is settling, I'm figuring things out as I go.
 And, actually sleeping and eating again. Probably because I was so exhausted, it was a relief to get going on treatment. Anything but more damned tests.

Which is why I needed to get on here.
  I have people I know who have been through this wringer, for different flavors of C, so I do have some points of reference...but, all situations are unique, too. I have a particularly nasty form. Fast and mobile. In my case. we have to be hyper aggressive in going after it. Hold your breath and hang on for dear life, as it were. All I knew is what to expect out of Chemo. They were right on, there.
 I have a caring family and My partner, Penny, who have a slew of questions, all  the time.
 Not going to put up with not knowing everything. Unlike myself.

 They are right, though. Not a time to be passive. It is literally the fight of my life.
 And I'd like to hang around another twenty years or so, thank you very much
 
 Hence.... here I am. And, at some point, I hope I can help others out, along the way, too.
 
 Thanks!
  MacWhee 12/30/14