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Hi from Becky
I agree with everyone else about staying on Herceptin at least. However, you really don't have 2 opinions IMHO at all. Both don't know what to do? Why is this? Have either given you a timetable of when they think they will make a decision. For example, Flori said that you have not been NED for a year yet. That was a smart statement. So, is that when your doctors will think about no chemo and only continue with Herceptin? Are they going to put some box around when they think they can make a decision and what are they going to base the decision on (since you are NED now). Will they use CTC tests, Her2 serum tests and tumor markers to help determine this. And when they stop chemo (but I am hopeful they will continue Herceptin for a longer period of time) what will they use for surveillance? The same tests above and scans?
Also both doctors said the same thing with no plan. Is that really a second opinion? Maybe so but there is no plan. For the surveillance or any additional blood work/tests you might want run routinely - well, maybe you should come up with a plan that you are comfortable with and try to get them to determine why they are not comfortable to put a timeframe on this and see what happens when you hit that time.
As I see it, there really isn't a plan or an endpoint - and you aren't even Stage 4 and even the Stage 4 women on this board end up with Herceptin only at some point even if a couple of years go by and they have to have chemo again.
Have any Stage 4 women on this board been given chemo and then not get some forward plan when they are NED - such as "you are NED but we are going to give you 2 more months of chemo and then just Herceptin alone" type of plan?
Keep the faith, Faith. You are doing wonderfully. Its hard to not have a concrete plan with anything in life and this has to be hard cuz its not like chemo is any fun. Why can't it just be that you don't know when you're going to go home from a great vacation.
Love, Becky
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