Introduction- my story

[Robkraft]

  In August 2014 , I woke up and I could hardly breathe , So I called my primary care doctor at the VA , he told me to get to an emergency room immediately, or see him If I could , seeing that I have no insurance. The VA is finicky about what constitutes an emergency , if it is decided by them that it was not an emergency you will end up paying.

  When I arrived to see the doctor , believe it or not I was seen in 3-4 minute , less than 15 minute later I was inside an ambulance , and the VA paid because it was directed by my doctor.

  They took me to a local hospital and immediately performed a CT , They thought at first it was congestive heart failure , but they discovered my left lung's pleural cavity was full of fluid. They then performed a Thorsten Tee-son and removed 1800 ML of fluid , they then transported me to the nearest VA hospital , They removed the fluid on Thursday and then they removed another 1800 ML, 5 days later , Finally on Friday before they sent me home , they used a bronchia scope on my left lung and removed 4 small pieces of my lung to perform a biopsy on what I had. The following week they sent me to a larger Hospital to have a PET scan done , it showed No dark spots on my lung , but there was a dark area on the bottom of the lung where the fluid was running from.

  Two days I met with an Oncologist and he told me up front It was Stage 4 Lung Cancer and that normally I would only have 6 months to a year to live, I was literally stunned , I did not say anything for about 30 minutes . I had to weigh what was said to me and then accept the results and go on with what I believed in is that I had less than a year left. They then installed an IV port and a drain tube , the drain tube was installed after they performed nine Thorsten Tee-sons on me. Four months later they removed the drain , but by then my lower lung had healed and was not producing anymore fluid.

  On my birthday in September I received my first dose of Chemo-therapy , I was scheduled to receive the Chemo in three week increments , when I went back for my second treatment , the Oncologist called to stop the Chemo to be given to me, he said there was another treatment I could take.

  I talked to the Oncologist and he told me that I could take this new pill called Erlotinib , It would attaché itself to the specific cancer gene and it would inhibit the growth of the cancer , but it would not kill it , I looked at the study report that was provided and it showed effectiveness of the pill to Twenty-four and as long as thirty-three months effectively. But taking the pill which has serious and nasty side effects , I weighed my options and told the Oncologist lets do this, I said I would accept and tolerant the side effects.

 

   So now I have been on Erlotinib for twenty-eight months , so far all of my CT's shows no active cancer in my left lung area , but I am running out of time, I am reaching the effective limits of Erlotinib , Thirty-three months, I have researched and have found that my cancer will change into the T70M cancer gene and that two different pills have proven effect on suppressing it.

 

  I know there is NO cure for Stage 4 Lung Cancer , all every one has left is a little time , I have learned to be positive about the situation and have accepted the fact I will die from Lung Cancer.

 

   I do believe I am a survivor , I had less than 3-7 % chance of gene matching and my left lung reflated, Over 75% do not.

All I can say to you is be and think positive.

   Robert

 

[Tom Galli]

Welcome Robert,

I don't believe there is ever a cure for lung cancer.  The best I hope for, after 13 years of surviving this madness, is NED -- no evidence of disease.  I saw my oncologist yesterday and received another NED pronouncement but I'm scheduled for another CT scan in August and we repeat the process.  Lung cancer, it seems, is persistant.

My reading about Erlotinib confirms your report.  Sometimes, cancer cells figure out a way to survive the Eriotinb assault.  However, I knew a lady who lived for 10 years taking Eriotinb or Tarceva.  She passed from a heart attack.  So, for some, this drug can be very effective.  You may be among this population. 

Our disease is under researched. Fortunately, however there is one small exception: adenocarcinoma and the small percentage of adenocarcinoma patients who's tumors display genetic abnormalities.  This is a very active research area and advances in targeted therapy and now immunotherapy are being frequently announced.  You are right, there is no cure for lung cancer, regardless of stage.  Here is a blog I wrote sometime ago about a National Cancer Institute study showing the frequency of lung cancer recurrence even for stage I and II diagnosis.  Lung cancer is so persistant that my oncologist, after 13 years surviving and 9 years NED, still doesn't use the "cure" word during my consultations.  That is why I see him 2 times per year.

You are indeed a survivor and the most important thing you've revealed is that you continue to "think positive" about your treatment and outcomes.  This is so very important. Welcome here.  Settle in. 

Stay the course.

Tom