ColleenRae

Thanks Michelle, I spent the last few days watching The Bonnie J. Addario Lung Cancer Living Room videos & reading in her book. I had never really looked at her stuff before, a lot of good information, but not much at all on the BRAF V600E mutation (pronounced B -Raff). My PET scan is tomorrow, next week is a check by my pulmonologist & an echocardiogram & on 4/9 is back to the oncologist. I also had to see my eye doctor before I'd be able to start the treatment they are recommending. I'm still waiting to get an appointment for my 2nd opinion at Penn Medicine in Philadelphia.
Thank you too Colleen, I was happy to hear you had gotten good news.
 

Hello Larry... Looks like you were the OP. I'm sorry I don't know much at this point about BRAF, but I hope you'll get some info here from others.
Shelkay - Very sorry to hear what you're dealing with and the need to dive into more research. You've got this down; you've proven that!  I hope your oncologist will work diligently with you on this.  Thinking of you!
Thank you, Michelle, for the YouTube Addario Foundation link... It's post like yours that offer so much info to all of us out here. I've bookmarked that site and will view it as I'm interested in all of this treatment / research info.  Thank you!

Okay my friends, this is a CALL for ALL LUNG CANCER SURVIVORS to PLEASE COME OUT COME OUT WHERE EVER YOU ARE!!
I know we have more Lung Cancer Survivors on this board then just the few of us who post all the time. I think it would be so wonderful to see more lung cancer survivors here so we can offer strength and hope to all the NEW SURVIVORS that will sadly have to join us one day.
How many of you sit here and gain strength from reading other lung cancer survivor posts? I know I do!
I don't know what to say to bring more Lung Cancer Survivors to the surface, but I know we need each other and we need to share with others that there are a LOT MORE SURVIVORS in this world then just a hand full of us. Please click onto the Reply button and say hello and share a little about your journey with us.
THANK YOU ALL.
Warm and Gentle Hugs,
Connie

They removed the lung tube last night And it felt wonderful for a while a breathing treatment came and I made a caugh and now I'm back-to ground 0 with pain Today I will just do what I can it's just too painful I was getting up I will try again .As far as the VA once we got going the care has been totally outstanding I could not ask for anything better the surgeon is outstanding the nurses are very friendly and understanding I am glad I am here if I have to be in the hospital 

It's over he only had to remove the top 1/3 of my lung and he was able to get the tumor out of my Trachea  you so it's a little narrow now.chest tube Hurts terrible 

So finally!  NO BRAIN CANCER , WOOT!  Surgery is scheduled for the 12th same plan , remove right lung.  VA physiatrist (yep) says headaches are stress related .
Still looking for a home for Amy , my room mate. 

Jeff,
Months ago, I got a card that allowed me to choose any physician I wanted if the VA medical system wait time was excessive. I didn't read the fine print details and filed the card away. Did you get one?
I know the card is still effective because I watched the new VA guy talk about it on a news conference. 
Many US congressional districts have established local professional staff positions to push the VA into acting. Contact your congressman's local office and tell this staffer about your delay. 
Google search Thoracic surgeons who practice at the Mayo Clinic in Florida (Jacksonville) and at hospitals in Tampa. Most have an email contact routine. Ask if one is willing to do a pro-bono surgery for you. I'd compose a email providing the details of your diagnosis and shotgun send it to every thoracic surgeon you turn up. I've heard of surgeons doing this for veterans in Texas, especially those exposed to agent orange. 
One thorasic surgeon for the two big VA hospitals is just plain stupid. Let me know if these approaches work.
Stay the course. 
Tom

I am all alone and scared. Not to proud to admit it.

Appointment was not good or good however you look at it.  Going to remove whole RT lung. Do pet scan and biopsy on large lymph node.
Seems half of lung has collapsed. And look into bad headaches.  

All over, feeling great. Doc says I can go home whenever I'm up to it. Since I live alone, thinking maybe first thing tomorrow.  Worst part so far has been sore scratchy throat from breathing tube. 
Nodule was cancerous but won't know type or stage till pathology results back next week. 
Thanks all for good wishes!