Road bum Posted August 27, 2019 Share Posted August 27, 2019 What exactly do you think when a Doctor starts talking about odd things? Things like, “ maybe clinical trials”, or, “hospice “, or, “quality of life”, and others. I know their is a possibility of clinical trials but I don’t want to up root my wife to travel somewhere for a treatment that might not work anyway. Not real sure I’m ready to be a test rat. I have had chemo three times in the last three years. Carboplatin, cisplatin, taxol, Taxotere alimta, and Keytruda. I’m not sure I got them all but my brain is mush after all that. I guess my question is where do I go from here? Is their anything else that I can do? I’m not looking for heroics but their ought to be something. Thank you for your time and consideration. Ron Link to comment Share on other sites More sharing options...
Rower Michelle Posted August 27, 2019 Share Posted August 27, 2019 Hello Ron, If there's one thing that has stayed with me as a result of your posts, it's RESOLVE. You've got such an amazing attitude, let's see if we can find a way to turbo charge your system. I had a few ideas out on my morning walk for your consideration: *Is it time for a second opinion at a "big guns" cancer center? *Has your oncologist taken your medical record to the tumor board to ask the question of what's next and dig deep into the creativity box *Is IV Vitamin C an option? *Call the GO2Foundation" at 1-800-298-2436,or email: support@go2foundation.org Ask for a referral for a lung cancer specialist. *Call the Lungevity Help Line, ask them for a referral too. Find your new A Team. As for clinical trials, they aren't what we used to think they are; especially if they are later stage (i.e. Phase III). I totally understand the lab rat thing, however, one of the ladies in the Lung Cancer Living Room on YouTube reported she was a "clinical trial junkie", she's been through more than a dozen trials and twenty years later, she's still here to talk about it. Another one of my ALK peers has been through 7 clinical trials. In a way, clinical trials are science short cuts for those of us who have receive a lot of treatment. I'm sure others will chime in as well. Please keep us posted. We're here for you. Michelle Link to comment Share on other sites More sharing options...
LUNGevityKristin Posted September 17, 2019 Share Posted September 17, 2019 Hi, Ron. If you want to learn more about clinical trials, there is a clinical trial finder and also you can get matched with a clinical trial navigator that can help you know what to expect during the process. All of that information is here: https://lungevity.org/for-patients-caregivers/lung-cancer-101/treatment-options/clinical-trials Link to comment Share on other sites More sharing options...
Road bum Posted September 17, 2019 Author Share Posted September 17, 2019 Thank you Kristin. I will check that out. Ron Link to comment Share on other sites More sharing options...
LUNGevityKristin Posted October 10, 2019 Share Posted October 10, 2019 Hi Ron, just wanted to check in and see how you're doing. Did you look into clinical trials? Link to comment Share on other sites More sharing options...
Road bum Posted October 10, 2019 Author Share Posted October 10, 2019 Kristen, to be honest I haven’t checked the link you gave me except for a cursory glance. I am due for a cat scan on the 14 th and then I will see the Doc the following Monday. I haven’t been on any chemo since August so we will see where we are a week from Monday. My Doctor has assured me that their are still a few options for treatment. i suppose it all hinges on what the scan shows. Thank you for thinking of me. I kind of left you all hanging after I asked you for help and I’m sorry. i did check on the clinical trail register and went thru it twice but I didn’t find anything I fit in. So right now I’m placing my bets on my Doctor. After that we will see. Ron Link to comment Share on other sites More sharing options...
Rower Michelle Posted October 12, 2019 Share Posted October 12, 2019 Ron- So good to hear from you! Please don’t feel like you have to apologize. You’ve been an inspiration here. My prayers for you on the 14th- each time I go for the scan I try to lock & load mentally. I keep saying it’s not what if there’s a clinical change but what comes next. So glad you’ve got a doc that’s willing to use whatever is in the arsenal. Hugs to you. Michelle Link to comment Share on other sites More sharing options...
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