learning2 Posted January 11, 2016 Share Posted January 11, 2016 I thought it might help me to start a thread and update it periodically regarding my mom, mostly for myself but also in case folks like me come searching for people with similar situations. Mom had progressively worsening back pain that started in 2015 - the pain got very bad during the summer and after negative x ray they did an MRI and saw what appeared to be metastatic disease in the spine. Further testing confirmed lung as the primary, and positive for EGFR mutation. This was in November 2015. She had radiation treatment for her back pain which helped tremendously - she had been taking a ton of ibuprofren multiple times a day and was still in pain. The radiation has resolved that nearly completely. She started Tarceva on 11/23, and just had her first follow up scan on January 6 which showed a reduction in her primary site from 2.8 to 2.5 cm! We are thrilled. She had some nausea very early on but we think that might have been a late effect from the radiation. She had been very fatigued and nauseous up until just after Thanksgiving but has been gradually feeling better and better since then. Other than that, she has had some rash and itchy swollen eyes, but nothing too bad so far. I'm so hopeful for a prolonged and continued response! I plan to post updates over time here so just wanted to share our experience so far! Thanks for this wonderful resource. Shagby 1 Quote Link to comment Share on other sites More sharing options...
Tom Galli Posted January 11, 2016 Share Posted January 11, 2016 Wonderful news. Tarceva, I've read, works remarkably well when the adenocarcinoma type of NSCLC displays an EGFR mutation. I had Tarceva in the 2005 timeframe before the days of genetic testing for tumor mutations. In that time, doctors knew Tarceva worked in a small percentage of NSCLC patients but didn't know why it worked. Indeed, subsequent studies revealed Tarceva does not work for Squamous cell carcinoma, my diagnosis. I experienced quite a bit of lower GI problems along with very bad face, head and neck acne. So it appears your mother is having a positive response from Tarceva with minimal side effects. I hope this continues. Stay the course. Tom Scubakate and Mlgates 2 Quote Link to comment Share on other sites More sharing options...
pollyalison Posted January 12, 2016 Share Posted January 12, 2016 I was diagnosed in October, 2015 with NSCLC and have been being treated with Iressa Gifitinib tablets. I had my last scan on 7th January 2016. So far, the cancer in my neck lymph nodes and chest lymph nodes has disappeared, flecking in the left lung is no longer visible and the tumour which is the primary in my right lung is visibly reduced. The tablets seem to be working well. My attitude is very positive, stay strong. Alison Quote Link to comment Share on other sites More sharing options...
RandyW Posted January 17, 2016 Share Posted January 17, 2016 congrats..... if your dealing with the rash something my late wife found that helped out was nivea blue cap lotion...are you getting anything for nausea and fatigue?? ohj and rash is indicator of success for treatment... keep us uipdated!!! Quote Link to comment Share on other sites More sharing options...
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