BobbieA

Welcome. I was diagnosed with the same mutation in December 2015 and have been on Afatinib, also a TKI drug like Tarceva, since then and have felt great. I've hit a bump in the road, progression, and have had some radiation for that. I will be getting a second opinion next week to see if more genetic testing is needed. Sent from my iPad using Tapatalk

Hi Gage, When the time comes that there is progression while on Gilotrif, you will have a new biopsy to check for the T790M mutation. My onc told me they will do a liquid biopsy (blood draw) first and if that comes back negative (there can be false negative results) they will do a tissue biopsy. I have the same dx you do, EGFR+ Exon 19 deletion. Gilotrif is most effective if you have the Exon 19. If you google Tagrisso, you will find out more about it. No point in worrying about whether or not you will have the T790M. Enjoy the time Gilotrif is giving you! But educate yourself so you will know what options are out there, don't depend entirely on your oncologist to know everything. Are you on Facebook? If so there are a number of cancer organizations to follow, including Lungevity, that post a lot of information about new treatments. Lungevity also has a Group for patients with the EGFR mutation.

Hi Gage, thought I would share that I have been on Gilotrif since December 2015 and today received results from the scan I had on Monday. The primary tumor in my right lung is gone. For some reason my onc didn't order a scan for my abdomen as he usually does, but nothing was seen in the liver or spleen areas they could see where I had mets when dx. I started on 40 mg. which was adjusted to 30 mg. in March. According to reports online the efficacy of 40 and 30 mg. is about the same. And the side effects are much more tolerable at 30. I think that the progression free survival average is about a year rather than 28 months. And, there is a new pill after Gilotrif. 60% of patients with acquired resistance to Gilotrif are positive for T790M mutation and can be treated with Tagrisso. I, too, am a former smoker. I quit 34 years ago, the day my mother-in-law was dx with lung cancer. She survived 8 months. You should definitely have a scan about every three months. My first after starting treatment was at two months. I was like you, I knew it was working as my symptoms quickly improved. May we continue to do well!

I'm glad to be back to the Lungevity Forum. Thanks for the welcomes! I'm not in the UP of Michigan, but northwest lower peninsula. Have patience with me as I learn my way around?

I switched from Diclofenac (generic for Voltaren) which isn't one of the normal arthritis drugs to OTC Aleve. It's not as effective, but it's not causing liver problems. I'd hate to have to stop successful cancer treatment because my liver is unhappy.

After increasing shortness of breath beginning in August 2015 I finally went to urgent care (because my PCP had no openings) on October 26, 2015. Had a chest X-ray and was dx with pneumonia and was given antibiotics. Antibiotics had no effect so went back a week later, another chest X-ray and labs and told to see my PCP before the end of the week. Still couldn't get an appointment so saw the nurse practitioner who ordered another chest X-ray and gave me deep breathing exercises. The radiologist suggested I have a CT and they found lots of stuff in my right lung, nodules in left lung and nodules in liver and spleen. I was referred to a pulmonologist who dx me with COPD and ordered a thoracentesis for the pleural effusion I had in the right lung. The fluid was malignant so a dx of adenocarcinoma was made from the fluid. They also sent the fluid to Mayo for genetic testing. It was positive for EGFR, Exon 19 deletion, so I was prescribed 40 mg. afatinib which I started taking on December 22, 2015. This was reduced to 30 mg. in March 2016 because of the side effects I was experiencing. The only concern we've had is my liver enzymes were elevated moderately. I discontinued the statin drug I was taking for cholesterol. This helped for a month and then they went back up again so I did a little research on other meds I was taking and found the NSAID I was taking for arthritis can cause liver problems so I discontinued that med and the enzymes have been in the normal range since then. Keeping my fingers crossed. I am being treated in a small community hospital which is very convenient but missing many of the services offered in a cancer center. My oncologist is in town once a week.

According to my profile, it seems I joined the forum in April 2016 and then promptly forgot about it. As I was trying to register yesterday it said my email was already in use so knew I must have already joined. Finally was able to change my password so I'm back. I'm a 77 year old female dx with Stage 4 NSCLC in December 2015. I live in a small town in northern Michigan with my husband of 58 years. We have two children and two grandchildren.