Deb W Posted May 9, 2020 Share Posted May 9, 2020 Hi everyone, I will be starting treatment May 18. It's been an overwhelming 10 days. I feel I'm researched out! I have been asked if I would like to participate in a clinical trial. Basically they are using the drugs that my Oncologist plans on using but the sequencing would be different. The trial would be testing the timing of immunotherapy alone or with chemotherapy as first line treatment and maintenance in non-small cell lung cancer. I am wondering if anyone who has been in a trial and if you think it's beneficial. The only risk I see is that if I'm in the group that only gets immunotherapy alone first - it seems that getting to the cancer would be slower that way rather than starting out with a combo of chemo and immuno. I sort of feel like I need some kind of course to keep up with all this stuff. I'd really appreciate any thoughts you might have on this. Is it o.k. to attache the trial document here? Link to comment Share on other sites More sharing options...
Tom Galli Posted May 10, 2020 Share Posted May 10, 2020 Deb, I wouldn't think there is a problem with attaching the trial document to your next post. It might be helpful to educate those of us who've not encountered a trial. I had but one trial opportunity when my first surgical consultation resulted in a no surgery decision. The trial was to have conventional chemotherapy or conventional chemotherapy administered while in a hyperbolic oxygen environment. We didn't have much time to make the decision and it became irrelevant anyway because my GP twisted my surgeon's arm so much that surgery was back on the table. I can't therefore offer much practical advice on your trial drugs or method. Anyone else have thoughts? Stay the course. Tom Link to comment Share on other sites More sharing options...
Deb W Posted May 10, 2020 Author Share Posted May 10, 2020 17 hours ago, Tom Galli said: Deb, I wouldn't think there is a problem with attaching the trial document to your next post. It might be helpful to educate those of us who've not encountered a trial. I had but one trial opportunity when my first surgical consultation resulted in a no surgery decision. The trial was to have conventional chemotherapy or conventional chemotherapy administered while in a hyperbolic oxygen environment. We didn't have much time to make the decision and it became irrelevant anyway because my GP twisted my surgeon's arm so much that surgery was back on the table. I can't therefore offer much practical advice on your trial drugs or method. Anyone else have thoughts? Stay the course. Tom clinical trial (1).docx Link to comment Share on other sites More sharing options...
Deb W Posted May 10, 2020 Author Share Posted May 10, 2020 I don't know what happened but the clinical trial attachment is attached above. Maybe some on this site might be eligible to participate. Link to comment Share on other sites More sharing options...
Tom Galli Posted May 10, 2020 Share Posted May 10, 2020 Deb, A suggestion on attaching data. Try and convert it to a .pdf file before posting it to the site. Your attachment is a Microsoft Word document and these don't download well and are difficult to read with those of us who have a Mac computer. Here is a good step-by-step tutorial on how to make the conversion. Stay the course. Tom Link to comment Share on other sites More sharing options...
MBinOregon Posted May 13, 2020 Share Posted May 13, 2020 Hi Deb, I don't have any trial experience although I was treated at a "Comprehensive Cancer Center", so I don't have any insights to share, but mostly here to send my virtual support 😁🙏🤞 I honestly don't know if I would have participated in a trial even if it was offered to me - one of the main reasons is the fact that *I* don't get to control which group I'd get to be in. By not participating in any trial, I get to decide what/how my treatment would look like. If I were in your shoes, I'd ask (if you haven't) everyone on my medical team - med onc, rad onc, pulmonologist, ... on what each of them think pros/cons of being on a trial like this would be (even if you've done more than enough research on your own...)... hopefully that'll help you decide. No matter which way you decide to go, you'll have my and other folks full support 😊 Sending warm thoughts, MB Link to comment Share on other sites More sharing options...
LUNGevityKristin Posted May 14, 2020 Share Posted May 14, 2020 Hi Deb, What phase is the trial in? LUNGevity has a Clinical Trial peer mentoring program that might be helpful for you. You can talk one on one with a person who has been through the steps of a clinical trial and get all of your questions answered. https://lungevity.org/for-patients-caregivers/support-services/peer-to-peer-mentoring/clinical-trial-ambassadors Link to comment Share on other sites More sharing options...
Deb W Posted May 14, 2020 Author Share Posted May 14, 2020 Hi, The trial is in Phase III. Kristin, thanks so much for the link. I've decided to go with a more aggressive treatment to start and so I won't be participating in the trial at this time. Link to comment Share on other sites More sharing options...
LouT Posted May 15, 2020 Share Posted May 15, 2020 Deb, I just want you to know that you're in my prayers and thoughts. I have no chemo experience so I'll be learning from the trial and your reports. Lou Link to comment Share on other sites More sharing options...
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