4mydad Posted June 18, 2019 Share Posted June 18, 2019 My dad was recently diagnosed with Stage IV Metastatic Adenocarcinoma with cancer in his lungs, bone, and a tumor near his spine. He's currently getting radiation for that tumor. He is in his early 70s (although most people think he's much younger), he smoked in his teens for about 5-6 years, but quit in the 1970s. Six years ago, he had his right middle lobe removed because it was malignant. He hadn't had any symptoms since, we just recently learned about this. He has been tested and the results are negative for PD-L1, ALK, BRAF, and ROS1, but positive for the EGFR analysis (Exon 19 & T790M). He will be starting Tagrisso (osimertinib) as soon as the prescription is ready: 1. Is it worth inquiring about the KRAS test? 2. Is there anyone out there as old as he is? Has osimertinib been working for you? 3. Should we combine chemo with the osimertinib? 4. What has been your prognosis? Link to comment Share on other sites More sharing options...
Rower Michelle Posted June 18, 2019 Share Posted June 18, 2019 Hello there and Welcome. It’s nice to meet you! While I do not have the EGFR mutation , I have ALK and lead a support group with a number of EGFR peeps. 1st- once identified as EGFR then it’s not necessary to test for KRAS as you can really only have one mutation upon diagnosis. 2nd the folks in my support group are taking Tagrisso in their 70s. The oldest one is 75, all of whom are tolerating the inhibitor quite well with good quality of lives. They are out there living their lives. 3rd- generally chemo isn’t combined with targeted therapy, Tagrisso. It’s a very effective drug which works very quickly. It passes the blood brain barrier and will heal the bone metastases. I wouldn’t be too worried about the PDL-1. With mutations even if there is some PDL-1 expression, for some unknown reason immunotherapy doesn’t work in these gene mutations. The researchers do not understand the underlying cause. While there is no cure for Stage IV NSCLC, with these inhibitors, this is managed as a chronic condition with a high quality of life. What is tricky about this is how long the inhibitor is effective, it’s different for everyone which is generally years and counting. There’s a growing number of long term EGFR survivors. I’d recommend purchasing Diana Lindsay’s book. “Something More Than Hope”. She’s 13+ years. There are over 900 clinical trials for EGFR today and growing; there’s hope on the horizon. Michelle Link to comment Share on other sites More sharing options...
4mydad Posted June 18, 2019 Author Share Posted June 18, 2019 Thank you Michelle. Looking at the prognosis online, the numbers seem grim, I'm hoping that's changing. Link to comment Share on other sites More sharing options...
Rower Michelle Posted June 18, 2019 Share Posted June 18, 2019 Dr Google is a really scary place. Here’s the real deal: there have been more advances in LC treatment in the last 3 years than the last 30. All of those on line stats are wrong as they can not account for these discoveries. The CDC’s last years of data go from 1975 to 2010 according to a report I saw yesterday. Here in this forum there are many long term survivors. The science is moving fast- it’s so hard to do however the internet is just flat out wrong. Link to comment Share on other sites More sharing options...
ale Posted June 18, 2019 Share Posted June 18, 2019 Hi Michelle, how are you? Have you got news about therapy after tagrisso or new drugs for EGFR+? My mother have only pleural mets and I hope that this mets go away with any therapy.... thanks and kiss Link to comment Share on other sites More sharing options...
Rower Michelle Posted June 18, 2019 Share Posted June 18, 2019 Hi Ale, There is a Lung Cancer Living Room on YouTube today- maybe they will have an EGFR update. Nothing new for now. 🙁 At least not that I’m aware of. I hope your Mom is doing well. Michelle Link to comment Share on other sites More sharing options...
ale Posted June 20, 2019 Share Posted June 20, 2019 Hi Michelle, thanks, my mother in this time lives very well with Tarceva and have a parzial remission but she have pleural mets...do you know any One that have complete remission on pleura with target therapy?? Thanks and kiss Link to comment Share on other sites More sharing options...
Tom Galli Posted June 20, 2019 Share Posted June 20, 2019 4mydad, Michelle gave you very good information on survival statistics. They are indeed dated and more than that, they are based upon lots of uncontrolled statistical inputs. This offers further explanation. My prognosis: In February, I celebrated living 15 years after diagnosis of late-stage NSCLC. I've had 4 recurrences and I've had every form of treatment there is for lung cancer save immunotherapy. My prognosis is if I can live, so can your dad. My statistical prognosis was and is irrelevant. Stay the course. Tom Link to comment Share on other sites More sharing options...
Rower Michelle Posted June 20, 2019 Share Posted June 20, 2019 3 hours ago, ale said: Hi Michelle, thanks, my mother in this time lives very well with Tarceva and have a parzial remission but she have pleural mets...do you know any One that have complete remission on pleura with target therapy?? Thanks and kiss Hello my dear friend, Yesterday I watched the Lung Cancer Living Room on YouTube. I learned that the American Society of Clinical Oncologists (ASCO)met earlier this month to review emerging treatment. I’d recommend Googling ASCO 2019 EGFR, you will find a number of hits including short videos with leading experts. Many of us on targeted therapy can achieve “no evidence of disease”- it’s the term used rather than full remission. What you want to see on your Mom’s scans is continued small improvement or an indication that the condition is “stable”. So glad your Mom is doing well on treatment. Try not to spend too much time thinking about what’s next. As soon as there’s another big breakthrough, believe me we’ll all know about it. Hugs, Michelle Link to comment Share on other sites More sharing options...
ale Posted June 23, 2019 Share Posted June 23, 2019 Thanks Michelle for your words...I' m afraid for my mother, two mounth ago my father is dead for heart problema and I'd like have my mom for time... thanks and kiss Link to comment Share on other sites More sharing options...
4mydad Posted July 18, 2019 Author Share Posted July 18, 2019 Hey all, My dad is doing well on the Tagrisso (i think). He's a little weak, but okay for now. He has a transfusion on Wednesday to "help repair some of his bone damage". Anyone know what kind of transfusion this is? Side effects? Effectiveness? Thanks - this place has been so helpful. Link to comment Share on other sites More sharing options...
Rower Michelle Posted July 18, 2019 Share Posted July 18, 2019 Hello there, Yes, I’m familiar with this. The name of the IV med escapes me, however I have two friends receiving this to help heal their bone Mets. It’s doing the job well! It’s hard to say if there are any side effects as they have fatigue which could be from the targeted therapy. Your Dad is getting great care, this is the typical protocol. I’ve seen some amazing changes with my friends and they are now kicking butt in yoga classes. Hope your doing well! Michelle Link to comment Share on other sites More sharing options...
Tom Galli Posted July 18, 2019 Share Posted July 18, 2019 4mydad, Your dad may have had an infusion of Zometa, a drug that is commonly used to repair bone damaged from cancer mets. Here is the FDA data sheet on the drug that covers conditions of use and side effects. Stay the course. Tom Link to comment Share on other sites More sharing options...
Rower Michelle Posted July 18, 2019 Share Posted July 18, 2019 Yes Tom- that’s the name of the drug! Link to comment Share on other sites More sharing options...
4mydad Posted July 19, 2019 Author Share Posted July 19, 2019 Thank you Tom & Michelle. You both have been amazing! Link to comment Share on other sites More sharing options...
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