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AlaskaAngel · 10-22-2008, 10:59 AM

Joe: Thank you for that info, as it is new to me. One other problem for me was that I specifically asked my oncologist at the time about clinical trials, and even though HE knew I was HER2 positive he did not mention the trial to me since I was both node-negative and under 2 cm (not eligible for the trial). A patient can be asking the "right" questions to the best of one's ability and still be left out of the loop....

Deb: As I understand it, TOPO IIA testing doesn't require a fresh sample, and someone did post recently that a test for it has been approved... You know quite a bit about the process behind clinical trials, and I am wondering whether it would provide reasonably important information to collect a representative group of those of us who "missed out" on traztuzumab and test us to get more of an idea how relevant TOPO IIa testing actually is? I gather that about 1/3 of HER2s would be TOPO IIa? Wouldn't it also help in deciding whether (or not) to do other therapies? Wouldn't it also provide some insight into whether there are HER2 positives who both did not get trastuzumab AND are not Topo II and have not recurred?

I definitely have followed the questionable treatments and understand the need for caution. But evidence-based medicine stumbles around when trials for nontoxic treatments are subordinated to established toxic regimens that are already known to work for less than 20% of the people recommended to receive them.

What they do not know is 2-fold:

1. The effect of chemotherapy may be stronger initially, but since chemotherapy effect only generally holds for around 5 years (and the evidence long-term for trastuzumab with or without chemo is not yet in), having adjuvant trastuzumab "late" without chemo may in fact be MORE effective in that the combination treatments in that the immune system has not been damaged (not to mention, the patient has not been left carrying an extra load of fat from the drugs like steroids that are given with chemo, and thus MORE predisposed to recur).

2. Is there any technical explanation after multiple years now of why chemo given with trastuzumab would actually be more effective?

10-22-2008, 10:59 AM	#25
AlaskaAngel Senior Member Join Date: Sep 2005 Location: Alaska Posts: 2,018	Good discussion Joe: Thank you for that info, as it is new to me. One other problem for me was that I specifically asked my oncologist at the time about clinical trials, and even though HE knew I was HER2 positive he did not mention the trial to me since I was both node-negative and under 2 cm (not eligible for the trial). A patient can be asking the "right" questions to the best of one's ability and still be left out of the loop.... Deb: As I understand it, TOPO IIA testing doesn't require a fresh sample, and someone did post recently that a test for it has been approved... You know quite a bit about the process behind clinical trials, and I am wondering whether it would provide reasonably important information to collect a representative group of those of us who "missed out" on traztuzumab and test us to get more of an idea how relevant TOPO IIa testing actually is? I gather that about 1/3 of HER2s would be TOPO IIa? Wouldn't it also help in deciding whether (or not) to do other therapies? Wouldn't it also provide some insight into whether there are HER2 positives who both did not get trastuzumab AND are not Topo II and have not recurred? I definitely have followed the questionable treatments and understand the need for caution. But evidence-based medicine stumbles around when trials for nontoxic treatments are subordinated to established toxic regimens that are already known to work for less than 20% of the people recommended to receive them. What they do not know is 2-fold: 1. The effect of chemotherapy may be stronger initially, but since chemotherapy effect only generally holds for around 5 years (and the evidence long-term for trastuzumab with or without chemo is not yet in), having adjuvant trastuzumab "late" without chemo may in fact be MORE effective in that the combination treatments in that the immune system has not been damaged (not to mention, the patient has not been left carrying an extra load of fat from the drugs like steroids that are given with chemo, and thus MORE predisposed to recur). 2. Is there any technical explanation after multiple years now of why chemo given with trastuzumab would actually be more effective?