Andrea Posted September 1, 2004 Share Posted September 1, 2004 Have you ever thought about getting a dog and naming it Ned or is it just me? Anyway, I am curious, has anyone researched clinical trials around the US to see if there are any for maintence of NED? I feel guilty posting this question given everyone's different situation, so I apologize in advance. Right now it is just Iressa, but that does not work for everyone. We called OSI Pharmaceutials who makes Tarceva today, the woman was SO nice and told my parents to call back anytime. She does not expect the drug to be out until sometime in 2005. I am going to do some research, I just wanted to see if others did and what their experiences were. Quote Link to comment Share on other sites More sharing options...
Alisa Posted September 2, 2004 Share Posted September 2, 2004 I was IIIa and am NED right now. I haven't heard of anything for prevention of recurrence or new primary, other than vitamins and herbs, which I have been taking since my diagnosis. I would love to hear if you find anything. Thanks. Quote Link to comment Share on other sites More sharing options...
Nushka Posted September 2, 2004 Share Posted September 2, 2004 Andrea, I asked my oncologist that very question and he said "the only thing you can do is not smoke and pray". I would love to be on some kind of preventive programs as well....they didn't even give me Iressa. Nina PS, I have a CT/PET coming up next month. Quote Link to comment Share on other sites More sharing options...
Joe B Posted September 2, 2004 Share Posted September 2, 2004 Andrea, I have been NED since surgery. I do have radiation induced changes in the lung that we are tracking to ensure they are just that... I try and excerise to intrduce high levels of oxygen into the cells (cancer cannot live in an environment of high oxygenation), and I take vitamin & other supplements. Quote Link to comment Share on other sites More sharing options...
Hebbie Posted September 2, 2004 Share Posted September 2, 2004 I too have been NED since Surgery in January 2003. There are a few trials out there, but they really are few and far between. I had researched a vaccine trial at the University of Kentucky that was supposed to be geared towards preventing a recurrence, but it had been put on hold. That was a year ago, I don't know the status to date. There is also the Copper Therapy (which Cary has posted about). Like Joe said, I just follow a great nutritional plan and exercise plan and saw an Intergrative Doctor, who put me on some supplements. Along with prayer, that's about it! Make sure your mommy takes care of herself! Quote Link to comment Share on other sites More sharing options...
mhutch1366 Posted September 2, 2004 Share Posted September 2, 2004 Andrea, I have been NED since Aug 2000. I do pray, I admit that. I have a thing for red meat (steak, yum!!) and ICE CREAM I gained 5# this summer from ice cream -- hooray! I am still 20 + pounds shy of pre cancer. I take so goshdarn many meds that I gave up on all my b vitamins and antioxidants and multi vitamins. Too darned many pills. I am also not walking enough, which I need to do to lower bp. Blood work is fine, cholesterol and good cholesterol are fine, all that stuff is fine. The closer I get to the 5 year mark post surgery the more ecstatic the surgeon gets. I have had some small skin cancers removed, but other than that -- nothing. A dog would help, but can't do it in a rental . Only prevention is Heidi, telling me she wants me to stick around , and Katy telling me I WILL stick around..... and the fact I have a job so I don't have to live in my car. Prayer is powerful. Still aint no guarantees. Remember the beer truck..... XOXOXOXOX MaryAnn Prayers always. Quote Link to comment Share on other sites More sharing options...
Andrea Posted September 2, 2004 Author Share Posted September 2, 2004 Thanks Maryann--my mom knows about that beer truck all too well, that is literally how her father died when she was 12. He was walking across the street and boom. Sometimes I lose sight of that and dwell on cancer too much instead of other real life things too Quote Link to comment Share on other sites More sharing options...
mhutch1366 Posted September 2, 2004 Share Posted September 2, 2004 Andrea, My mom's uncle willie went for cigarettes and a drunk taxi driver killed him. I am not going to say anything about bad health habits. Seriously, I do believe in prayer. I believe I am still here for a reason, which may never be clear to me. That's okay. I don't really NEED to know.... lol. XOXOXOX MaryAnn Quote Link to comment Share on other sites More sharing options...
Connie B Posted September 3, 2004 Share Posted September 3, 2004 Andrea, Aren't most clinical trials for Stage IV used for stage IIIA & B? I could be wrong, but I think many of them may be used for Stage III's as well! Wishing you and mom all the best. Quote Link to comment Share on other sites More sharing options...
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