Gage Posted December 27, 2016 Share Posted December 27, 2016 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. MaryTD777 1 Quote Link to comment Share on other sites More sharing options...
Thesenora Posted December 30, 2016 Share Posted December 30, 2016 First time here for me...I too am on gilotrif...my oncologist was happy as well to share the news with me...side effects starting to subside a bit...went from 40 to 30mg...trying to cope...trying to enjoy... sites like these are very inspirational and comforting.... not easy to find a fellow "gilotrifer" around town...but, at least these sites allow us to find one... regards, jayjay MaryTD777 1 Quote Link to comment Share on other sites More sharing options...
Tom Galli Posted December 31, 2016 Share Posted December 31, 2016 Jayjay, Welcome here. I see you and Gage have a treatment in common. It is not unusual to experience reduced strength oral chemotherapy. I was told in what is now ancient history (2007) when I had my oral chemotherapy experience, that dosing trials are not as comprehensive because of the need to get effective and needed treatment to those with lung cancer. Consequently, a dosing change is common. I was also told it would not effect the effectiveness of the medication. Ask away if you have questions. Stay the course. Tom MaryTD777 1 Quote Link to comment Share on other sites More sharing options...
LaurenH Posted January 3, 2017 Share Posted January 3, 2017 Hello, Gage and JayJay, Welcome to LCSC! I am glad to see that you've already connected with Tom. I hope that you will many meaningful connections with other patients/survivors, caregivers, and advocates whose lives have been affected by lung cancer through LCSC. As the Digital Community Manager for LUNGevity Foundation, I am happy to help you find the resources and support that will be most helpful to you. Please feel free to continue exploring the message boards and joining the conversations which ressonnate with you. And please let me know if you'd like more information on any particular topic or about LUNGevity's Support & Survivorship programs. With gratitude, Lauren -- Digital Community Manager LUNGevity Foundation MaryTD777 1 Quote Link to comment Share on other sites More sharing options...
Gage Posted January 8, 2017 Author Share Posted January 8, 2017 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 Quote Link to comment Share on other sites More sharing options...
RobinH1 Posted January 9, 2017 Share Posted January 9, 2017 I just joined after having found this site thanks to JayJay's posts on Inspire. I have been on 40 mg Gilotrif for 5 weeks now after having been diagnosed in Sept with cancer in right lung and mets to liver and brain. I had surgery to remove the largest of the brain mets and gamma knife on the other two, followed by 2 rounds of chemo while waiting for the mutation report. I've been really lucky (its about time :)) in that I have had really mild side effects from the Gilotrif and those that I have had are starting to improve. I had my first CT scan since starting Gilotrif on Friday and am just waiting for the results and as we all know the waiting is really hard. It seems I spend half my time scouring the internet for any tidbit of information, so I am glad to have found this site. Tom Galli 1 Quote Link to comment Share on other sites More sharing options...
LaurenH Posted January 10, 2017 Share Posted January 10, 2017 Hi, Robin, Welcome to LCSC! We're glad you've joined as well. This is a great forum to connect with other patients/survivors who are living with a lung cancer diagnosis. I'm happy to hear that your side effects have been minimal. Please keep us posted on your CT scan results--we'll be sending lots of positive thoughts your way! Please feel free to explore the discussion boards and blogs and join in some of the conversations. And let us know if you have any specific questions or if you're looking for any additional resources/support. With gratitude, Lauren -- Digital Community Manager LUNGevity Foundation Tom Galli 1 Quote Link to comment Share on other sites More sharing options...
MaryTD777 Posted January 21, 2017 Share Posted January 21, 2017 It sounds like we should rename this conversation Giloftrif!! [emoji5]I am so glad it sounds like this medicine is THE thing y'all needed!! Good luck & God bless!!Take care, Mary Sent from my SM-N920V using Tapatalk Mally and Tom Galli 2 Quote Link to comment Share on other sites More sharing options...
Tom Galli Posted January 21, 2017 Share Posted January 21, 2017 Hello Robin and welcome here! I truly hope the scan results show a vast improvement. I know what Scanziety is all about. In fact, despite being a long time survivor, I still see my oncologist 2 times per year and endure the very same post-scan uncertainty anxiety you do. Stay the course. Tom Mally 1 Quote Link to comment Share on other sites More sharing options...
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