Gage

Thanks, Tom.  My rash is not nearly as bad as you describe.  It looks like acne and itches and burns but seems to be letting up a bit after about 3 weeks of Gilotrif.  With a little of my wife's makeup  I even made an appearance New Years Eve.
I was prescribed Doxycycline "for the rash" and didn't quite see the connection.  I can understand if the purpose is to head off infection but when asked, my oncologist said that the Doxycycline appears to have a beneficial effect on the rash that goes beyond the antibiotic itself and that they don't really understand why.  I love a mystery...
Gage
 

Tom, I'm eating a plain bowl of steamed rice...  a little warm milk and some sugar would be better but I'll try it your way.
I'm reminded of when we lived in Japan.  If we were staying at an inn they'd ask if we wanted an American or a Japanese breakfast.  The American one would have toast and fried eggs but for some reason they'd cook it the night before and serve it ice cold.  If you went for the Japanese breakfast you'd get a piece of dried fish and a bean dish called natto.  Natto was stinky, slimy fermented beans.  I bet it could stop diarrhea too...

Thanks again, BobbieA.  I've taken your advice and asked to join the Lungevity EFGR group.

I was looking for info on Gilotrif side effects and found this wonderful site and decided to stay a while.
My father passed away on October 1st.  He was nearly 96 years old and I had always assumed that I would have another 20 years left after he passed.  But before the week was over a chance CT scan turned up what was described to me as "a mass in your lung that looks malignant".  At least that's how I remember the phone call that Friday night.  We needed to carry on with the funeral and dealing with Dad's affairs so it was a couple of weeks before returning to Sarasota.  My local medical practice was hopeless so I self-referred myself to The Moffitt Cancer Center in Tampa.  The commute is hair raising but the facility is top notch.
We met an oncologist who said I had stage IV lung cancer and told me to get a brain MRI and a PET scan.  He said in passing that even though I hadn't smoked in 40 years, "I had smoked enough". 
A biopsy was performed but now it had been a month and a half since the original CT scan.  The results seemed to take forever but one day they started showing up on my Moffitt Patient Portal.  This was the first time I had seen the terms EFGR and the Del 19 mutation.  The report also pointed out that this type of situation responded well to a certain type of targeted therapy.
Finally back to the oncologist who seemed rather pleased to tell me I'd be treated with Gilotrif - a pill, once a day.  Oh, and by the way, my situation is only seen in non-smokers!
So two plus months after that CT scan I'm taking Gilotrif and have been for a couple of weeks.  The side effects aren't pleasant but still, I consider myself lucky.  I don't know what happens next but we'll see the oncologist later this week and maybe get an insight into the future.

Thanks, Tom.  My rash is not nearly as bad as you describe.  It looks like acne and itches and burns but seems to be letting up a bit after about 3 weeks of Gilotrif.  With a little of my wife's makeup  I even made an appearance New Years Eve.
I was prescribed Doxycycline "for the rash" and didn't quite see the connection.  I can understand if the purpose is to head off infection but when asked, my oncologist said that the Doxycycline appears to have a beneficial effect on the rash that goes beyond the antibiotic itself and that they don't really understand why.  I love a mystery...
Gage