Robert A. Posted June 9, 2020 Share Posted June 9, 2020 My wife went for her infusion of Docetaxel yesterday and her oncologist said she thinks my wife would benefit from a new treatment called TABRECTA. Has anyone tried this? The Dr. is looking into it with my insurance and pharmacy about getting it, it's a pill. Link to comment Share on other sites More sharing options...
Lin wilki Posted June 9, 2020 Share Posted June 9, 2020 Never heard of it but it is a targeted drug. Your wife must have a mutation that the drug targets if she has the targeted mutation then a pill is waaay better than chemo let us know how it goes Link to comment Share on other sites More sharing options...
Rower Michelle Posted June 10, 2020 Share Posted June 10, 2020 Hi Robert, This is an interesting development in your wife’s treatment plan. Lin is correct in that there must have been biomarker testing that revealed a MET mutation. Tarbrecta was only recently approved by the FDA. @jack14 and @Deb W have recently discovered their lung cancer is caused by the MET mutation. You might look for their posts. Your wife is probably the first person in this forum to receive Tarbrecta. I recently discovered a public Twitter feed for MET: https://mobile.twitter.com/METCrusaders I have a similar mutation called ALK that has been treated with a targeted therapy (also referred to as an inhibitor) for the last 20 months. Generally speaking the targeted therapies are much better tolerated with fewer side effects than traditional chemo. The quality of life can be excellent because the drug works like pac-man to chip away the cancer. You can expect a lot of lab draws in the beginning, scans every 4-6 weeks for monitoring. Labs and scans get gradually spaced out. Right now I have labs every 8 weeks, CT chest scans every 4 months and a brain MRI six months. Overall, this is good news! Michelle Link to comment Share on other sites More sharing options...
Robert A. Posted June 10, 2020 Author Share Posted June 10, 2020 17 minutes ago, Rower Michelle said: Hi Robert, This is an interesting development in your wife’s treatment plan. Lin is correct in that there must have been biomarker testing that revealed a MET mutation. Tarbrecta was only recently approved by the FDA. @jack14 and @Deb W have recently discovered their lung cancer is caused by the MET mutation. You might look for their posts. Your wife is probably the first person in this forum to receive Tarbrecta. I recently discovered a public Twitter feed for MET: https://mobile.twitter.com/METCrusaders I have a similar mutation called ALK that has been treated with a targeted therapy (also referred to as an inhibitor) for the last 20 months. Generally speaking the targeted therapies are much better tolerated with fewer side effects than traditional chemo. The quality of life can be excellent because the drug works like pac-man to chip away the cancer. You can expect a lot of lab draws in the beginning, scans every 4-6 weeks for monitoring. Labs and scans get gradually spaced out. Right now I have labs every 8 weeks, CT chest scans every 4 months and a brain MRI six months. Overall, this is good news! Michelle Thanks Michelle, my wife hasn't started on the new medication yet but the Dr. is looking into changing her over. Link to comment Share on other sites More sharing options...
jack14 Posted June 11, 2020 Share Posted June 11, 2020 Hi Robert: It is wise to use lines of therapies sparingly in order not to run out of treatments. Which is why I suspect, your wife's Oncoogist is waiting to see how her current treatment plays out. Please keep us informed as there are several of us in the same situation. I, for instance, am taking Keytruda and hoping that it helps me. I am a week and a half into my second dose and not sure if I will develop intolerable side effects, or find out that it isn't helping. But, thankfully, I also have the MET amplication and may be able to fall back on the Tabrectra if the Keytruda doesn't work out. Good luck and godspeed Jack Link to comment Share on other sites More sharing options...
Robert A. Posted June 11, 2020 Author Share Posted June 11, 2020 11 hours ago, jack14 said: Hi Robert: It is wise to use lines of therapies sparingly in order not to run out of treatments. Which is why I suspect, your wife's Oncoogist is waiting to see how her current treatment plays out. Please keep us informed as there are several of us in the same situation. I, for instance, am taking Keytruda and hoping that it helps me. I am a week and a half into my second dose and not sure if I will develop intolerable side effects, or find out that it isn't helping. But, thankfully, I also have the MET amplication and may be able to fall back on the Tabrectra if the Keytruda doesn't work out. Good luck and godspeed Jack Hey Jack, my wife started her treatment for her LC in November of last year. It was Keytruda & Carboplatin, after 4 rounds she was scanned and showed the tumor shrinking. The same regimen was continued and she was scanned after another round and this time it showed the tumor growing . She was then started on Docetaxel 21 days ago, the 1st treatment was too strong and she had to be hospitalized for 5 days a few days after the treatment. Her last treatment was Monday but the strength of this dose was reduced. This past visit to get an infusion she saw the oncologist and that is when she said that Tabrecta might be a better option for her. Link to comment Share on other sites More sharing options...
MarieE Posted June 11, 2020 Share Posted June 11, 2020 We have a consult this afternoon to discuss Tabrecta. We had been waiting for the final genetic testing report to be completed, and it was confirmed this morning that my husband has a MET exon 14 skipping alteration. He had a very bad experience with an initial round of chemo after his lobectomy so we are hoping this is an option. Never thought I'd spend so much time praying for targetable mutations! 😉 Link to comment Share on other sites More sharing options...
Robert A. Posted June 12, 2020 Author Share Posted June 12, 2020 10 hours ago, MarieE said: We have a consult this afternoon to discuss Tabrecta. We had been waiting for the final genetic testing report to be completed, and it was confirmed this morning that my husband has a MET exon 14 skipping alteration. He had a very bad experience with an initial round of chemo after his lobectomy so we are hoping this is an option. Never thought I'd spend so much time praying for targetable mutations! 😉 Best of luck, I hope it works for your husband. Link to comment Share on other sites More sharing options...
MarieE Posted June 12, 2020 Share Posted June 12, 2020 9 hours ago, Robert A. said: Best of luck, I hope it works for your husband. Thanks… We hope so as well! Link to comment Share on other sites More sharing options...
Robert A. Posted June 15, 2020 Author Share Posted June 15, 2020 Good news, my wife has been approved to start Tabrecta. She recently had a round of chemo so we have to wait, she has an appointment with the nurse on the 25th to have her explain the use of this new drug. Link to comment Share on other sites More sharing options...
MarieE Posted June 15, 2020 Share Posted June 15, 2020 Excellent news, Robert. We are waiting to hear back regarding insurance preauthorization. In the meantime my husband is scheduled to begin radiation on one particularly bothersome spot on Thursday. We already had the consult to go over the side effects and other considerations regarding Tabrecta. So we are set to start whenever we know it’s not going to cost us $15,000 a month out of pocket. 😉 Link to comment Share on other sites More sharing options...
Robert A. Posted June 16, 2020 Author Share Posted June 16, 2020 1 hour ago, MarieE said: Excellent news, Robert. We are waiting to hear back regarding insurance preauthorization. In the meantime my husband is scheduled to begin radiation on one particularly bothersome spot on Thursday. We already had the consult to go over the side effects and other considerations regarding Tabrecta. So we are set to start whenever we know it’s not going to cost us $15,000 a month out of pocket. 😉 If it looks too costly look into the assistance program. We have yet to discuss cost but my insurance has approved. https://www.us.tabrecta.com/met-exon-14-skipping-mutation-nsclc/patient-support/financial-resources-support/?site=MTX-1229341GS100003&source=01030&gclid=EAIaIQobChMIvNul04fz6QIVT9bACh1JFgK_EAAYASABEgK5MvD_BwE&gclsrc=aw.ds Link to comment Share on other sites More sharing options...
MarieE Posted June 16, 2020 Share Posted June 16, 2020 Thanks for the link… The doctor did mention this in case the co-pay was high. Link to comment Share on other sites More sharing options...
MarieE Posted June 16, 2020 Share Posted June 16, 2020 Discouraging day on this end. Insurance is saying they don't cover the drug. Our case worker is following up and we're also looking into the Novartis assistance program. Link to comment Share on other sites More sharing options...
Robert A. Posted June 16, 2020 Author Share Posted June 16, 2020 1 hour ago, MarieE said: Discouraging day on this end. Insurance is saying they don't cover the drug. Our case worker is following up and we're also looking into the Novartis assistance program. Sorry to hear that, I hope Novartis can help you out. Link to comment Share on other sites More sharing options...
Rower Michelle Posted June 17, 2020 Share Posted June 17, 2020 Marie, Have you had the oncologist file an appeal with the insurance company? They expect the path of least resistance, so you have to be prepared to fight, even if it means calling your Congressional Representatives. I hope the treatment team can lobby on your husband’s behalf. Michelle Link to comment Share on other sites More sharing options...
MarieE Posted June 17, 2020 Share Posted June 17, 2020 We're still working our way through. Hopefully it will all work out in the end. Frustrating, to say the least. Link to comment Share on other sites More sharing options...
Robert A. Posted June 18, 2020 Author Share Posted June 18, 2020 The day has come. This will be the 1st day my wife starts her new treatment with Trabecta. We picked up the medication yesterday. The regimen is 2 tablets twice a day. Link to comment Share on other sites More sharing options...
Lin wilki Posted June 18, 2020 Share Posted June 18, 2020 How great! Wishing you guys much success Link to comment Share on other sites More sharing options...
MarieE Posted June 18, 2020 Share Posted June 18, 2020 Wonderful news, Robert! My husband got approved for the 2-week free trial yesterday so we're just waiting to get the drug into our hands. We've also been working with Novartis for the ongoing assistance program. Hoping that Trabecta works great and with minimal side effects for both of our spouses! Link to comment Share on other sites More sharing options...
Robert A. Posted June 18, 2020 Author Share Posted June 18, 2020 6 minutes ago, MarieE said: Wonderful news, Robert! My husband got approved for the 2-week free trial yesterday so we're just waiting to get the drug into our hands. We've also been working with Novartis for the ongoing assistance program. Hoping that Trabecta works great and with minimal side effects for both of our spouses! So glad you worked something out, I owe it all to my wife's team for doing all the work in getting this medicine. It really made me happy when I saw that you were able to get some too. Here is hoping for much success for both of our spouses. Link to comment Share on other sites More sharing options...
Rower Michelle Posted June 19, 2020 Share Posted June 19, 2020 Great news! You might want to come up with some type of ritual, or visual cue to serve as a reminder for when to take the meds. I have to take three pills twice a day and even with alarms we had a few oh uh almost misses. It’s so easy to forget especially as you start to feel like a normal human being again. Link to comment Share on other sites More sharing options...
Robert A. Posted June 19, 2020 Author Share Posted June 19, 2020 4 minutes ago, Rower Michelle said: Great news! You might want to come up with some type of ritual, or visual cue to serve as a reminder for when to take the meds. I have to take three pills twice a day and even with alarms we had a few oh uh almost misses. It’s so easy to forget especially as you start to feel like a normal human being again. 8am & 8pm Link to comment Share on other sites More sharing options...
Robert A. Posted June 19, 2020 Author Share Posted June 19, 2020 This medicine is so new it doesn't show up in the DR.'s database of medicines. My wife went to her pulmonologist today and when the nurse took her information on new medications she was taking it didn't show up on her computer & the Dr said he had never heard of it. When we went to pick it up from the pharmacy the pharmacist had to read the side effects and information from the paperwork it came with. Link to comment Share on other sites More sharing options...
MarieE Posted June 19, 2020 Share Posted June 19, 2020 So excited! My husband got approved under the Novartis assistance program. So he’ll start on Monday and be able to take it as long as it’s effective and he can tolerate it. Link to comment Share on other sites More sharing options...
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