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heblaj01 · 06-02-2006, 12:05 PM

Annemarie,

I certainly cannot give an advice one way or an other. Since your onc has an open mind & is still looking for answers at ASCO while you are NED you are then taken care for the short term. I can nevertheless understand your anxiety & doubts about what to do.

I can only speculate about the motives of your onc.
The lack of knowledge about long term side effects of Herceptin (cardiac or unknown ones) may be a factor when balancing the unknown benefits of long term treatment for a patient already NED against the possible drawbacks.
A common attitude of oncs is to wait for a change in disease status in patients who are stable (even if not NED) & have no pain before offering a new treatment. Older treatments usually do not extend survival when given preventively & can reduce quality of life. But Herceptin could be different & it is undertandable you are worrying about brain mets.

He may be fearing that prolonging Herceptin might revert the disease to ER+ as has been observed in some cases.

You may also recall that a study in Finland showed that a 9 weeks Herceptin treatment had outcomes as good a longer treatments.

Finally, try reading one of the long post by Gina where she describes in detail how she stopped treatment 4 times over a period of about 4 years, resuming Herceptin every time mets came back to see them disappear each time (she had a cooperative onc also willing to adjust dosage to the importance of mets).
I can't say that repeated readministration of Herceptin will work with everyone but a small study showed that some patients who have progressed on Herceptin still benefit on first readministration.

06-02-2006, 12:05 PM	#2
heblaj01 Senior Member Join Date: Apr 2006 Posts: 543	Annemarie, I certainly cannot give an advice one way or an other. Since your onc has an open mind & is still looking for answers at ASCO while you are NED you are then taken care for the short term. I can nevertheless understand your anxiety & doubts about what to do. I can only speculate about the motives of your onc. The lack of knowledge about long term side effects of Herceptin (cardiac or unknown ones) may be a factor when balancing the unknown benefits of long term treatment for a patient already NED against the possible drawbacks. A common attitude of oncs is to wait for a change in disease status in patients who are stable (even if not NED) & have no pain before offering a new treatment. Older treatments usually do not extend survival when given preventively & can reduce quality of life. But Herceptin could be different & it is undertandable you are worrying about brain mets. He may be fearing that prolonging Herceptin might revert the disease to ER+ as has been observed in some cases. You may also recall that a study in Finland showed that a 9 weeks Herceptin treatment had outcomes as good a longer treatments. Finally, try reading one of the long post by Gina where she describes in detail how she stopped treatment 4 times over a period of about 4 years, resuming Herceptin every time mets came back to see them disappear each time (she had a cooperative onc also willing to adjust dosage to the importance of mets). I can't say that repeated readministration of Herceptin will work with everyone but a small study showed that some patients who have progressed on Herceptin still benefit on first readministration.