Roz Posted July 5, 2019 Share Posted July 5, 2019 Hi everyone, My doctor stopped the trial since my CT scan showed at least 20% progression in all ten of the nodules which means the treatment was not working at all. So, after 7 weeks, I now have a few options. Since my mutation is KRAS G12D which is currently being researched a lot, there is hope for a more targeted treatment in the future. But, for now, looks like a new trial will be activated in about 3 ish months and it will target all forms of RAS (including KRAS, and of course that means healthy RAS that is in our bodies). At this point, I don't know what the side effects could be, when it starts, the intensity of the schedule, etc.. I will check in with my doc in about a month and also try to schedule an appointment with the doc who is in charge of this new trial to see what information he could give me about it. So, for now, I wait, and wait...while the "gradual growing nodules" continue what they are doing... Best, Ro Link to comment Share on other sites More sharing options...
Susan Cornett Posted July 5, 2019 Share Posted July 5, 2019 Roz - I'm so sorry that you didn't have better results with this trial. But I remain optimistic that you'll find yourself in another trial soon and that it will be successful. Link to comment Share on other sites More sharing options...
Tom Galli Posted July 5, 2019 Share Posted July 5, 2019 Ro, Read Free and Invaluable on the Stay The Course blog. (I can’t link it because I’m using my phone). There is an email address in that blog for the National Institute of Health Lung Cancer research team. Write them and tell them of your DX and treatments thus far. They may have ideas. Stay the course. Tom Link to comment Share on other sites More sharing options...
Rower Michelle Posted July 5, 2019 Share Posted July 5, 2019 Oh Ro- that sucks! I wonder if the trial is working for anyone else. Hopefully the investigators will learn why there wasn’t a response in the protocol, because of your willingness to participate this could be invaluable data. We’ll continue to pray that these are slow growing nodules with hope on the horizon for the next clinical trial. Back to the waiting game- Tom Petty got it right. We’re all here for you! Michelle Link to comment Share on other sites More sharing options...
Robert Macaulay Posted July 5, 2019 Share Posted July 5, 2019 Roz That is toughie after the time and effort you put in, The good news is you found out about another new trial and i am sure you will again will put the time and effort into researching this option. Bob Link to comment Share on other sites More sharing options...
BridgetO Posted July 5, 2019 Share Posted July 5, 2019 Hi Roz, I'm sorry to hear that the trial didn't work for you. Fingers crossed that the next one will be better. Bridget O Link to comment Share on other sites More sharing options...
Roz Posted July 7, 2019 Author Share Posted July 7, 2019 Hi Everyone, Thanks so much for all of your support. I'm used to the waiting part, but this is tougher given the fact that the cancer is actively progressing even if at a slower rate than some cancers. I'll travel to NYC to hear more details about my next potential trial. In the meantime, it gives more and more research a chance to be happening directed to KRAS G12D. Has anyone out there been on MEK inhibitors? I'm wondering about side effects because I know the new trial uses Mek inhibitors downstream going after RAS. However, it would go after all RAS in the body, not just where the cancer is..so I'm interested to know what side effects there are in that situation. Thanks again, Best, Ro Link to comment Share on other sites More sharing options...
Terri L Posted July 7, 2019 Share Posted July 7, 2019 I am new here and not sure of the trial you were on, but the fact it is not working is tough to hear. However, being new to this my oncologist told me there are new things happening every day. Hopefully you try another one soon. Link to comment Share on other sites More sharing options...
Roz Posted July 8, 2019 Author Share Posted July 8, 2019 Tom, Thanks for the suggestion. I'll check it out. FYI-The trial I was just on involved the use of the personal cancer vaccine + immunotherapy (Tecentriq)- but it didn't work. Take care, Ro Link to comment Share on other sites More sharing options...
Roz Posted July 8, 2019 Author Share Posted July 8, 2019 Tom, I did email them. How does it work? Would I then need to go to Bethesda another medical opinion? They asked me to send scans, etc.. Thanks, Ro Link to comment Share on other sites More sharing options...
Tom Galli Posted July 8, 2019 Share Posted July 8, 2019 Ro, From what I understand, you'd be invited to Bethesda at the government's expense. They'd give you a complete diagnostic and determine if you would fit one of their ongoing studies. If not, they may tailor a unique study for you. All examinations, diagnostics and treatments are at no expense to you, including travel and lodging and meals during treatment. So that is a good thing and I do hope they can help you. If you do decide to go to Bethesda, please consider reporting on your experience. Many here would benefit from a first hand report. Stay the course. Tom Link to comment Share on other sites More sharing options...
Roz Posted July 8, 2019 Author Share Posted July 8, 2019 Wow, Tom, that would be amazing. I will definitely report back if I end up going there. Thanks for rec!! Take care, Ro Link to comment Share on other sites More sharing options...
Tomm Posted July 10, 2019 Share Posted July 10, 2019 Hi Roz, really sorry you have to change your care plan again, I admire your think forward attitude to the next thing, believing in a future helps us get to a future. When I got my swollen lymph node last Nov. you were there to help and I quote you "I'll keep sending you positive vibes!! and now I will do the same and keep sending you positive vibes. I hope your able to get into the trial that Tom told you about.. please post as you find your new way. Link to comment Share on other sites More sharing options...
Roz Posted July 10, 2019 Author Share Posted July 10, 2019 Thanks Tomm!! I'm sending my info to the NIH which is what Tom suggested. I'll keep everyone up=to-date! Thanks for the positive vibes! I can feel them working! Best, Ro Link to comment Share on other sites More sharing options...
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