Tamara Posted February 9, 2019 Share Posted February 9, 2019 Hi, My best friend has stage 4 lung cancer and she has the EGFR gene mutation exon 18. She will be starting a trial called TAK 788. Has anyone experienced this trial yet and could give any input? Thanks for the help! Tamara Link to comment Share on other sites More sharing options...
Rower Michelle Posted February 10, 2019 Share Posted February 10, 2019 Hi there- I’m so sorry about your friend’s diagnosis. Unfortunately I’m not an EGFR mutant however there are some in this forum who are. There is a very active EGFR Facebook page that may also be worth exploring. Another resource would be the survivor advocate program at the Bonnie J Addario Foundation. They have a very impressive medical advisory board & have spent a fair amount of time studying lung cancer mutations. Hope this helps. Michelle Link to comment Share on other sites More sharing options...
LaurenH Posted February 15, 2019 Share Posted February 15, 2019 Hi, Tamara, I'll reach out to members of our community who are EGFR+ and ask if they can provide any insight to you and your friend! With gratitude, Lauren -- Digital Community Manager LUNGevity Foundation Link to comment Share on other sites More sharing options...
Tamara Posted February 19, 2019 Author Share Posted February 19, 2019 Wow, thank you so much! That is very helpful. Well, after some new tests that came back, my friends spots in her brain are not big enough to take the trial now. I guess that is a good thing, but then it's always nice to have a drug that only targets the cancer and not the rest of the body. She could potentially be a candidate for this trial in the future so we shall see. For now, they are going to put her on Tagrisso. Also, during all of the testing for this trial, they found a tumor on her spine, which explained her vision problems and shoulder/neck pain. She is currently doing two weeks of radiation. She was diagnosed July 2017 and has been amazing in her fight with this, but what I'm wondering what you think of Tagrisso? I am not on Facebook but maybe I will get an account to go check out this site. And thanks for the info on the Bonnie J Addario Foundation, I have not heard of it but will check it out. Thanks again!! Link to comment Share on other sites More sharing options...
Rower Michelle Posted February 20, 2019 Share Posted February 20, 2019 Hi Tamara I don’t do Facebook either ( tried but that’s another story!) Tagrisso is a targeted therapy taken orally everyday. For most EGFR mutants it’s a very effective drug which is also fast acting. Some people get pain relief within a few days. The outcome data to date is excellent. The most common side effects are fatigue, constipation & edema. Your friend would benefit from 8oz of organic beet juice ( yuck but works to keep the liver happy) For constipation check out Petra-Sol-C- citrus fiber & lots of cruciferous veggies. Thanks for checking in! Michelle Link to comment Share on other sites More sharing options...
Tamara Posted February 20, 2019 Author Share Posted February 20, 2019 Thank you so much Michelle! I will definitely pass this on. Link to comment Share on other sites More sharing options...
Lms23 Posted February 20, 2019 Share Posted February 20, 2019 Dear Tamara, I'm sorry for your friend. My father took Tagrisso for 10 months. He was diagnosed with lung cancer stage IV on July 2012 and took Tarceva, Iressa and then Tagrisso. He's lived really well and without collateral damages for more than 6 years! On last December he went to the hospital and unfortunately passed away 2 weeks ago. He had some heart issues (besides kidney and lung failures), that the doctors say that were maybe caused by Tagrisso. If your friend is taking Tagrisso, maybe would be good to talk to a cardiologist. I hope your friend continues the fight against cancer, as my dear dad did. I wish you good luck! Best wishes. Link to comment Share on other sites More sharing options...
Neverstopfighting Posted May 21, 2019 Share Posted May 21, 2019 Wow, That last comment stopped this conversation right away. I’m sorry for your loss LMS23. The latest stats from my Onc at MSK is the median PFS for Tagrisso is 18.9 months. That is progression free survival and really the only number oncologists look at with medication. Of course, side effects and complications occur with any drugs, especially one this powerful. I’m hopeful with the Tagrisso plus Vizimpro trial I am currently in. For me personally, I have hope that by the time my cancer cells start to resist my treatment, there will be another generation of EGFR mutation TKIs that will address the resistance. Link to comment Share on other sites More sharing options...
ale Posted May 29, 2019 Share Posted May 29, 2019 Hi, I'm italian and my mother have Lc Egfr+ esone 21 and take Tarceva from dicember...have you news about new drugs?? Another question: do you know about tki and pleural mets?? Thanks and kiss Link to comment Share on other sites More sharing options...
Rower Michelle Posted May 29, 2019 Share Posted May 29, 2019 Hi Ale- Hello from your ALK friend. My TKI wiped out the plural effusion. Hope it does the same for Mom. Michelle Link to comment Share on other sites More sharing options...
ale Posted May 30, 2019 Share Posted May 30, 2019 Hi Michelle, my mother have not versament from october because she have a "talcaggio" (write in italian) but have same "noduli" in the pleura, nothing out One lung... sorry for my english...my question was about tki and pleural mets without versament.... thanks and kiss from Italy!! Link to comment Share on other sites More sharing options...
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