Dyan721 Posted January 17, 2018 Share Posted January 17, 2018 I am wondering if there is anyone else on this forum who has a HER-2 lung cancer mutation? I guess it is pretty rare (1-4% incidence). HER-2 is much more common in breast cancer. Thanks, Dyan Link to comment Share on other sites More sharing options...
lindalouwho Posted February 21, 2018 Share Posted February 21, 2018 Just got the news today that my father has this mutation. Doctor said Herceptin won't be covered on his insurance, but will be checking into it. Link to comment Share on other sites More sharing options...
Dyan721 Posted July 24, 2018 Author Share Posted July 24, 2018 How is your dad doing? There are 2 clinical trials enrolling now for EGFR/Her2 Exon 20 mutations. I am probably going to do the 1st one. They are AP32788 and the Poziotinib trial only at MD Anderson. The 1st one has multiple sites. You can find them at clinicaltrials.gov. I have been surviving with stage IV lung cancer for 16 months now. It's not easy but you've got to keep on fighting. Link to comment Share on other sites More sharing options...
Tracy Culver Posted September 13, 2018 Share Posted September 13, 2018 I have the HER2+ mutation. I haven’t found anyone else with it. You Re the first! I’m getting Kadcyla infusions every 3 weeks right now. Link to comment Share on other sites More sharing options...
Dyan721 Posted September 14, 2018 Author Share Posted September 14, 2018 Hi Tracy, it’s great to meet another HER2 exon 20 person. We are a rare breed indeed (estimated 3,500 in the U.S). How is your treatment going? I have been in 😋 Link to comment Share on other sites More sharing options...
Dyan721 Posted September 14, 2018 Author Share Posted September 14, 2018 Sorry. I have been in the TAK-788 trial for 2 weeks. I joined the exon20group.org. You might want to check it out and join too. Best of luck to you. Link to comment Share on other sites More sharing options...
Heidi Posted November 19, 2018 Share Posted November 19, 2018 On 9/13/2018 at 8:59 PM, Dyan721 said: Sorry. I have been in the TAK-788 trial for 2 weeks. I joined the exon20group.org. You might want to check it out and join too. Best of luck to you. I hope you are doing well on this trial. My husband has been on it since June 2018. So far stable scans, but no tumor shrinkage. Link to comment Share on other sites More sharing options...
Prat Posted February 6, 2019 Share Posted February 6, 2019 I am so glad to find this forum. My dad has the exon 20 insertion and we have switched to Kadcyla. He took four rounds of carboplatin, pemetrexed and pembrolizumab. Although he showed improvement after 2 rounds, the cancer had spread after 4 rounds. Would love to know about people who are on Pyrotinib, Poziotinib and any other clinical drugs. Link to comment Share on other sites More sharing options...
LaurenH Posted February 15, 2019 Share Posted February 15, 2019 On 9/13/2018 at 8:59 PM, Dyan721 said: Sorry. I have been in the TAK-788 trial for 2 weeks. I joined the exon20group.org. You might want to check it out and join too. Best of luck to you. Hi, Dyan721, Could you reach out to Tamara? Her best friend is starting the TAK-788 trial and would like to talk to someone else who has experience. With gratitude, Lauren -- Digital Community Manager LUNGevity Foundation Link to comment Share on other sites More sharing options...
Lin wilki Posted March 6, 2020 Share Posted March 6, 2020 Just saw these postings! I have HER2 amplification. So far immunotherapy was a bust. Just finished 4 rounds of Carboplatin and Alimta. Now Alimta only for maintenance. But one tumor is growing slightly. So another scan in 6 weeks then a decision if still growing. My oncologist is holding Kadcyla for later. It’s been a long 9 months and still I have no shrinkage! At some point I hope we find something that really works Link to comment Share on other sites More sharing options...
Lin wilki Posted May 3, 2020 Share Posted May 3, 2020 Started my targeted therapy. Kadcyla. Anyone else on this? One 90 minute infusion and second one will be next week. So far feeling no better. Still coughing, short of breath and fatigue. Can only hope it’s working! Im reaching out to others with HER2 for some positive news! Link to comment Share on other sites More sharing options...
Lin wilki Posted May 5, 2020 Share Posted May 5, 2020 Started my targeted therapy. Kadcyla. Anyone else on this? One 90 minute infusion and second one will be next week. So far feeling no better. Still coughing, short of breath and fatigue. Can only hope it’s working! Im reaching out to others with HER2 for some positive news! Link to comment Share on other sites More sharing options...
Lin wilki Posted May 5, 2020 Share Posted May 5, 2020 Next week will be second infusion on Kadcyla. Ok with some fatigue and fractured rib from coughing. Coughing seems reduced. Now I’m finding the dry mouth and mouth sores much worse than previous treatments. My previous solutions are not effective! Will certainly talk to my team but just wondering if anyone else has experience with this med? Link to comment Share on other sites More sharing options...
MarieE Posted July 7, 2020 Share Posted July 7, 2020 Just an FYI ... I ran across this article this morning. Sounds promising! https://www.onclive.com/view/trastuzumab-deruxtecan-shakes-up-her2-mutated-nsclc-treatment-paradigm Link to comment Share on other sites More sharing options...
Lin wilki Posted July 7, 2020 Share Posted July 7, 2020 Marie. Thanks so much for the info. I’m going to talk to my oncologist at some point about this. Right now if Kadcyla is working my P.A. says hopefully you get a couple of years of stability. Ride the Wave! But always good to know there is other options Link to comment Share on other sites More sharing options...
Rower Michelle Posted August 19, 2020 Share Posted August 19, 2020 Brief discussion from Dr Ben Levy on new developments in HER 2 durning this weeks Living Room remarks Link to comment Share on other sites More sharing options...
Lin wilki Posted August 20, 2020 Share Posted August 20, 2020 Thanks Michelle! Link to comment Share on other sites More sharing options...
Recommended Posts
Archived
This topic is now archived and is closed to further replies.