Robert A. Posted June 19, 2020 Author Share Posted June 19, 2020 1 hour ago, MarieE said: 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. That's great, I don't think anyone could buy this on their own except Jeff Bezos. Link to comment Share on other sites More sharing options...
MarieE Posted June 19, 2020 Share Posted June 19, 2020 2 minutes ago, Robert A. said: That's great, I don't think anyone could buy this on their own except Jeff Bezos. I agree! Please keep us posted on how your wife does on it and I will certainly do the same. Link to comment Share on other sites More sharing options...
Deb W Posted June 21, 2020 Share Posted June 21, 2020 Ha (Bezos)! That's such good news. Hoping he will be able to tolerate the drug and looking forward to hearing how he's doing on it. Link to comment Share on other sites More sharing options...
MarieE Posted June 22, 2020 Share Posted June 22, 2020 Well, the first two week supply just arrived so my husband will start taking them tomorrow morning. Fingers crossed that the side effects aren't too bad and that they actually work for him. The lump on his chest is still very prominent and painful and if the radiation doesn't start acting on that soon we'll probably ask to revisit the issue with the surgeon. We understand that clear margins would probably be impossible, but it seems that making it smaller would at least ease the discomfort. Link to comment Share on other sites More sharing options...
Robert A. Posted June 22, 2020 Author Share Posted June 22, 2020 1 hour ago, MarieE said: Well, the first two week supply just arrived so my husband will start taking them tomorrow morning. Fingers crossed that the side effects aren't too bad and that they actually work for him. The lump on his chest is still very prominent and painful and if the radiation doesn't start acting on that soon we'll probably ask to revisit the issue with the surgeon. We understand that clear margins would probably be impossible, but it seems that making it smaller would at least ease the discomfort. This will be day 5 for my wife and so far nothing major in side effects. She says she thinks one of her ankles is slightly swollen but I don't see it. I hope your husband has the same luck. Did the pharmacist talk to you about it? Our's said it is recommended to use gloves when handling the pills but thought that was a waste and just told my wife to wash your hands before and after handling and not to chew or crush the tablets. Link to comment Share on other sites More sharing options...
MarieE Posted June 22, 2020 Share Posted June 22, 2020 Good to hear, Robert!! I purchased compression socks for my husband on the advice of the nurse just to be on the safe side. He generally stays fairly active but does slow down in the afternoons. Link to comment Share on other sites More sharing options...
Rene Posted June 23, 2020 Share Posted June 23, 2020 Can those of you whose insurance covered the Tabrecta let me know what insurance coverage you have? My husband's insurance has denied coverage, and the appeal was not fruitful. Also, Marie, could you tell me what information you had to provide for the Novartis financial assistance? Thank you all. Link to comment Share on other sites More sharing options...
Robert A. Posted June 24, 2020 Author Share Posted June 24, 2020 Our's was covered by Optimum RX which is the company that covers our prescriptions. Link to comment Share on other sites More sharing options...
Rene Posted June 24, 2020 Share Posted June 24, 2020 Thank you, Robert. Link to comment Share on other sites More sharing options...
MarieE Posted June 24, 2020 Share Posted June 24, 2020 I think additional insurance companies will cover the drug in the future but it is so new that I think many have not even gotten around to adding it. That said, when my husband‘s doctor initially talked to us about it they asked if it would be okay if they applied to Novartis on his behalf for their assistance with the cost. We didn’t have to do anything on our end but there is information on the Novartis website regarding how to apply. https://www.novartis.us/our-products/patient-assistance/patient-assistance-foundation-enrollment Link to comment Share on other sites More sharing options...
MarieE Posted June 24, 2020 Share Posted June 24, 2020 More info here: https://www.us.tabrecta.com/met-exon-14-skipping-mutation-nsclc/patient-support/financial-resources-support/ Link to comment Share on other sites More sharing options...
Rene Posted June 24, 2020 Share Posted June 24, 2020 Thank you, Marie. My husband's doctor's office is also working on the application process and said it would handle everything, although we have to complete a financial disclosure. Fingers crossed. Link to comment Share on other sites More sharing options...
Robert A. Posted June 27, 2020 Author Share Posted June 27, 2020 Good news, my wife's 1st blood test after 1 week on Trabecta can back good nothing abnormal. 1 week down. Link to comment Share on other sites More sharing options...
MarieE Posted June 27, 2020 Share Posted June 27, 2020 Great news, Robert! My husband was advised to do blood work after 3 weeks so we’ve still got a bit of a wait. Link to comment Share on other sites More sharing options...
Robert A. Posted June 27, 2020 Author Share Posted June 27, 2020 26 minutes ago, MarieE said: Great news, Robert! My husband was advised to do blood work after 3 weeks so we’ve still got a bit of a wait. I guess after the bad chemo experience the Dr. is just a little cautious, my wife will be tested weekly for awhile. Link to comment Share on other sites More sharing options...
MarieE Posted July 7, 2020 Share Posted July 7, 2020 Well, two weeks done with the pills. Main side effects for my husband are loss of appetite, nausea and fatigue. No swelling at this point. The doctor said the side effects could also be partially due to the radiation (just two more sessions after today) so hopefully they'll get better soon. Still nothing near what he experienced with chemo. His next scan will be in early August and blood work is next week. Link to comment Share on other sites More sharing options...
Lin wilki Posted July 7, 2020 Share Posted July 7, 2020 The dream would be no side effects! Ahh the world of cancer is such a journey Link to comment Share on other sites More sharing options...
Robert A. Posted July 16, 2020 Author Share Posted July 16, 2020 Results of my wife's 1st blood test back after a covid scare, blood work is normal except a little low on protein. The tele conference with the oncologist today was very good and she is going to reduce the frequency of the blood tests from weekly to every 3 weeks. The Dr. also said she wants to do a scan after my wife has been taking the Tabrecta for 12 weeks. My wife started on June 18 so probably sometime in August. Her cough is all but gone now so we are very hopeful. Link to comment Share on other sites More sharing options...
Lin wilki Posted July 16, 2020 Share Posted July 16, 2020 Very good news! Link to comment Share on other sites More sharing options...
MarieE Posted July 16, 2020 Share Posted July 16, 2020 Wonderful news, Robert! So happy to hear this! My husband had his first blood draw today, so fingers crossed! He's still having a lot of issues with nausea, but that could have more to do with the radiation of the chest wall tumor. Hard to tell. He seemed a bit better today but only managed two bites of dinner. My husband is about 5 days behind your wife on the Tabrecta. He is due for a CT scan in late August, which will be 60 days on the Tabrecta and about 4 months overall since his last scan. I mentioned your comment about the cough to my husband and he agreed with me that his cough did seem somewhat diminished. We will meet with the radiation oncologist tomorrow and see where we go from here. We also have a follow up with the surgeon afterward to see if there's anything that can be done for the chest tumor in the meantime. Link to comment Share on other sites More sharing options...
Robert A. Posted July 17, 2020 Author Share Posted July 17, 2020 2 hours ago, MarieE said: Wonderful news, Robert! So happy to hear this! My husband had his first blood draw today, so fingers crossed! He's still having a lot of issues with nausea, but that could have more to do with the radiation of the chest wall tumor. Hard to tell. He seemed a bit better today but only managed two bites of dinner. My husband is about 5 days behind your wife on the Tabrecta. He is due for a CT scan in late August, which will be 60 days on the Tabrecta and about 4 months overall since his last scan. I mentioned your comment about the cough to my husband and he agreed with me that his cough did seem somewhat diminished. We will meet with the radiation oncologist tomorrow and see where we go from here. We also have a follow up with the surgeon afterward to see if there's anything that can be done for the chest tumor in the meantime. Hopefully it will start kicking in soon and he feels better. Link to comment Share on other sites More sharing options...
MarieE Posted July 17, 2020 Share Posted July 17, 2020 Thank you! We certainly hope so. Link to comment Share on other sites More sharing options...
Rower Michelle Posted July 17, 2020 Share Posted July 17, 2020 Outstanding! I remember when I stopped coughing, finally got a good night’s sleep. Carry on! Link to comment Share on other sites More sharing options...
LouT Posted July 19, 2020 Share Posted July 19, 2020 Robert and Marie, I've got everything crossed and prayers going out for both of you to see positive results in your loved ones. Lou Link to comment Share on other sites More sharing options...
MarieE Posted July 19, 2020 Share Posted July 19, 2020 First blood work is back and although we haven't yet discussed it with the oncologist, it doesn't look bad to me in general. That said, I'm not sure my husband is going to be able to tolerate the Tabrecta. He's had very bad nausea and really hasn't been able to eat any solid food for days. Thank goodness for protein smoothies and something new from his nutritionist: Boost Soothe. We actually decided that he needed a break today so he can eat some real food. It's been really bad and it breaks my heart to see him like this. He also finished up the radiation for the large protruding mass on his chest wall and met with the radiation oncologist last week. The advice is to restart the radiation since the mass does not appear to have gotten any smaller. They did a CT scan but we haven't seen those results yet. This is definitely not where we had hoped to be by now ... 😢 Link to comment Share on other sites More sharing options...
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