Newbie

[Cheryncp123]

I have only been recently diagnosed (3 months ago) with stage 4 metastatic non small cell adenocarcinoma of the (right) lung. I tested positive for the ALK gene and am taking Xalkori an oral medication. At this point (nearly 3 weeks in) I have had no side effects from this drug (thank goodness).

I will see my oncologist on Aug. 7th to follow up. I do not smoke nor have I ever been a smoker so this was a surprise to me as I was under the mistaken impression that only smokers or people exposed to toxic carcinogens were at risk.( I was exposed to second hand smoke for 35 years, my ex-husband was a heavy smoker). Since I have been diagnosed I have been trying to get the word out that this is a deadly misconception. I was seeing my PCP for shortness of breath, tightness in my chest, hoarseness and a persistent cough. I was diagnosed with bronchitis/asthma and given an antibiotic (to no effect) and an inhaler for several months before I became so short of breath I couldn't walk across the room and I decided I would make an appointment with a pulmonologist who on x-ray found that I had a pleural effusion. I was sent for a thoracentisis to drain the fluid (1.5 liters) and have it analyzed. It came back positive for malignant cells and I was then sent for a CT scan which showed a tumor on my right lung. I had a PET scan that revealed the tumor was contained to the right lung. I underwent a VATS procedure to drain (2 liters) and seal the pleura and biopsy the tumor. They did a genetic marker test on the tumor and it revealed a defective (ALK) gene. Up until this point I have had no serious illness in my life. And that is my story.

 

[Tom Galli]

Sharon,

 

We have a slightly different form of lung cancer but a similar surprise diagnosis.  Mine was eleven-and-a-half years ago.  There is much wisdom in the form of first person stories on Lungevity and other blogs.  The difference between a survivor blog and medical literature is the former gives insight to how treatment feels, both physically and mentally.  Thus, reading-in gives you notice of what may be your survival journey.  I say journey because treatment is a marathon.  Like you, my diagnosis was my first serious illness of my life, and I had the expectation that treatment would be swift and efficient.  Mine took more than 3 years and I still see my oncologist every 6 months.  So prepare for the long haul.  Oft times we forget (at least I forgot) the goal of treatment was to extend life.  I stopped living it for a while and got so caught up in the mayhem, I became depressed.  Therefore, I encourage you to enjoy doing the things you did before diagnosis, if your doctor approves.  I have a ritual I abide by.  I look at myself in the mirror every day and if I don't see an expiration date stamped on my forehead, I make a deliberate attempt to enjoy the day.

 

Stay the course.

[Cheryncp123]

Sharon,

 

We have a slightly different form of lung cancer but a similar surprise diagnosis.  Mine was eleven-and-a-half years ago.  There is much wisdom in the form of first person stories on Lungevity and other blogs.  The difference between a survivor blog and medical literature is the former gives insight to how treatment feels, both physically and mentally.  Thus, reading-in gives you notice of what may be your survival journey.  I say journey because treatment is a marathon.  Like you, my diagnosis was my first serious illness of my life, and I had the expectation that treatment would be swift and efficient.  Mine took more than 3 years and I still see my oncologist every 6 months.  So prepare for the long haul.  Oft times we forget (at least I forgot) the goal of treatment was to extend life.  I stopped living it for a while and got so caught up in the mayhem, I became depressed.  Therefore, I encourage you to enjoy doing the things you did before diagnosis, if your doctor approves.  I have a ritual I abide by.  I look at myself in the mirror every day and if I don't see an expiration date stamped on my forehead, I make a deliberate attempt to enjoy the day.

 

Stay the course.

Thank you Tom for the encouraging words. Fortunately since I had the fluid drained from my lungs I feel better than I have felt in a very long time and have been able to contine living my busy, hectic life as usual but learning to pace myself a little better. Knowing that you have lived long past the expiration date that most lung cancer sites on the internet gives you, gives me much hope. If God takes me tomorrow I am ready however there are a few things on my bucket list that I still would like to get done. Thank you again for your very uplifting words.

[gattgato]

Hi Sharon,

 

Thanks for writing.

 

My friend has just been diagnosed last week with the ALK gene. I am not sure at what stage she is at (was all a bit much to take in on the phone when she first told me on Friday). She is having chemotherapy. I have read a lot about people with ALK on Xalkori, when the time is right I will mention it to her - don't want her to think that chemo isn't the best route....she is in a fantastic hospital in Switzerland which is renowned for amazing healthcare, so I know they will have put her on the best type of treatment for her.

 

Maybe I will put you guys in touch as I am sure it'll help her to speak to someone with the same diagnosis as it is so rare.

 

I hope you are ok and feeling a bit better and positive. My thoughts are with you, as with everyone else on this forum.

[Cheryncp123]

gattgato, I am so new to all of this it is just starting to sink in. The Xalkori (an oral chemo pill) is still doing it's job with no real side effects. I go back for a PET scan the middle of September and am praying for the best. My labs all came back within normal range on my last onc visit so am praying all goes well with the scan. My prayers are with your friend and her medical group. Thank you for your input.

[RandyW]

hope everyone is doing ok!!! sounds good for everyone posting up!!!! IF we can help please do not hesitate to post up and ask! lots of great info in these forums!!