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I'm checking in since it's been a while. For any who don't know me, I've been surviving "incurable" lung cancer and cancer treatments for 4.5 years. I don't have any complicating illnesses and I'm physically fit. I'm 53 years old now.

Lately, Avastin has been hard to take. In fact, I only like it when I'm not taking it, because I skipped a treatment or was late. It seems to have slowly worn me down. The initial problems, like nose bleeds, don't bother me any more. Strange. What does bother me now is all my muscles ache, and not just right after a treatment. It's built up over time and it goes away slowly over time if I am off Avastin. I also get tired and need extra rest. I look forward to being a bad patient and not taking it again. Seriously, I hope to find out that there is a better balance between too much Avastin, and too much cancer. I've had 11 cycles.

A lot of people here use the term "No Evidence of Disease," or NED. My doctor has never used that expression, and I'm not sure technically what it means. When I started Alimta in 2004, it was the first effective drug that I could continue taking seemingly forever. Before that, it was 4 cycles and then wait. Since Alimta, I was always on treatment, and still am. I wouldn't call it precautionary, I had cancer. I don't think the cancer went away, but just got under control. I was lucky that Alimta gave me few side effects. For the record, I've had 55 cycles.

I'm new to the message boards, having arrived only a couple of months ago. I think reading your stories is helping me with some of the tough things about being a patient and facing an uncertain future. I try to read a few posts here each week, and Dr. West's columns on GRACE. I also occasionally check Medscape-Oncology/Hematology or just Google a few topics for news. Keeping up with the news has been easier with GRACE/OncTalk.

Thanks for caring, and stay in touch.

David in Chicago.

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A lot of people here use the term "No Evidence of Disease," or NED. My doctor has never used that expression, and I'm not sure technically what it means.

I've occasionally wondered too, and if I ever get close to needing a good definition I might ask Dr. West. I've seen the term equated to "complete remission," "complete response," or "disease-free period" in some medical publications, but I've never seen a clear description of what constitutes "evidence of disease." I would think that it implies current disease, not evidence of previous disease, because with all of my scar tissue and the reduced right lung volume it should remain obvious to anyone that something was going on there at one time. But if someday none of that stuff lights up on a PET and a CT doesn't show any more little nodules developing, I think I'll be ready to declare Ned is NED, at least for a while, whether my onc uses that term or not.



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Hi David-

I am just the opposite of you - Avastin to me was a cake-walk and Alimta wore me down physically. Isn't it funny how different people react differently to this stuff.

Anyway - you seem to be doing everything right so don't change it - I hope you have continued success and start to feel a little better!!

Hugs - Patti B.

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