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.

BobbieA, thank you for your posting and congratulations on your latest scan! You've given me a lot to think about. I immediately went back to look at my biopsy results and didn't see anything about a T790M mutation. What it did say was - "A deletion mutation is identified in EGFR gene, exon 19 between codon 746 and 750. The presence of EGFR E746-A750del5 mutation is reported to correlate with responsiveness to EGFR tyrosine kinase inhibitor therapies in patients with non-small-cell carcinoma." Do you think that you will move on to Tagrisso at some point?

Jay Jay, How long have you been taking Gilotrif? I've been taking it for 24 days and the rash is getting better. Still keep immodium close by, though. Gage

I've been on Gilotrif for 3 weeks now. I've had the trifecta of side effects; diarrhea, rash, and sore mouth. That said, I'm feeling better overall. Rib cage pain went away after only 3 days, I'm not short of breath, sleeping well and energy level is up. Diarrhea comes and goes. My oncology nurse told me, after a long bout, to take 2 immodiums followed by 1 every 2 hours for up to 48 hours. That's way more than the package recommends but who cares since it works. The rash is mostly on my face and scalp, but it seems to be on the decline. I sleep with cold packs on my head. I'm taking doxycycline. I'm told it has some not understood rash benefits beyond what would be expected of an antibiotic. Mouth sores are not too bad although I haven't been able to have an alcoholic drink in quite a while because it makes my throat burn. Remember Brandy Alexanders? I tried one last night and managed. I use a prescription called "Magic Mouthwash". I also use a homemade mouthwash made of 20 ounces of water with a teaspoon each of sea salt and baking soda. My Gilotrif is the 40 mg strength which is the strongest. Doctor says we can reduce the dose or even take a pill vacation if the side effects aren't tolerable. So far, so good. Someday we'll "do a scan" but we already know Gilotrif is working because I feel so much better. Also someday "the cancer will find a way around the pill, but who knows - maybe there's be a new pill by then". The quotes are from my oncologist. I like his attitude. He told me at our first meeting that even though I quit smoking 40 years ago, "I had smoked enough". After the biopsy he had to admit that my cancer is only seen in non-smokers. So there! The Gilotrif website describes a clinical trial between Giltotrif and chemo. Gilotrif patients averaged 28 months of progression free survival so that's my current planning horizon. I'd like to keep posting as time goes by and I'd love to hear how it's going for others.

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

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.

I started Gilotrif 2 weeks ago and have been getting all of the promised side effects. The current plague is a rash on my scalp that makes sleeping difficult. I use cortisone cream for itching and ice packs. Doctor also prescribed an antibiotic but I'm not sure how that's supposed to help. That said, my rib cage pain eased after only 3 days and now I cough less, breath easier and am less tired. I guess I shouldn't complain. Do the side effects ease over time?