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Hi, I'm late to this interesting thread. I enrolled in NSABP B-31 in April of 01, and lost that toss - no Herceptin. It was an extremely hard blow then. I'm okay with it now. I'm NED, initial diagnosis of occult primary with a 6cm axillary node (five of eleven were positive), ERPR-, grade 3. I'm concerned about those in the control groups who have recurred, or who are NED but still suffer from Herceptin envy.
To me, this trial differed from many, in that the outcome was already fairly certain to most (that it would have some benefit), the risk was small, and the stakes very high (high risk adjuvant treatment, potential "cure"). What do you think of the idea of Genentech and/or the trial groups offering formal support (emotional) to those who didn't get Herceptin and are having a hard time with that, especially those who've had a recurrence? I don't know that it would make a big difference - but it would be a nice gesture.
Also - do you think that out of these trial stats they'll be able to find any hard info on exactly HOW much it increases risk of recurrence, and/or aggressiveness, to have HER2+ cancer? There seems to be a lack of hard information - in fact, it doesn't seem that we know much more about quantifying this increased risk than we did when HER2neu was first discovered. Anyone close to the cutting edge on this, with some information? I'm also curious to see something about FISH levels (actual numbers, not just + or -) and corresponding increased or decreased risk and treatment response.
Debbie Laxague
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