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Michele--WAY to go with that serum Her-2 marker.
I am SO PROUD of your unrelenting quest to KNOW what may or may not turn out to be a "dark and terrible truth" but as the quote says, it is BETTER to KNOW... AND the PTEN!!! WOW!!! Fabulous...THANK you so much for sharing this access with the whole board.
Still, personally, I think it is an OUTRAGE that you are having to pay out of pocket for EITHER of these tests, although I at first was told by my onc that I would have to pay for the earliest series of serum her-2 markers I ran back in '03 as at the time...that test was sort of new, as the PTEN is now.
For folks out there unaware, for several years now, the Serum her-2 test is on the books as a STANDARD blood test, no more difficult for either your onc or primary care doc or even your OB-GYN to request than a CBC or Chem panel. All they have to do is WRITE it on either a script or regular bloodwork request. If you have her-2 and in some cases, just BC, the serum her-2 test is FULLY COVERED by your insurance...but for whatever reasons, MOST oncs STILL are refusing to run it. THIS MAKES no sense to me...if you have her-2 mets especially, you will want to know WHERE this marker is at all times...especially at its peak trough which will be JUST before you are given your next herceptin infusion. Have it pulled the day of your infusion before you get the herceptin to see it at its highest...then just for fun..yeah right..., if you are on the every 3 week herceptin schedule but are worried that you are progressing on it...have your serum her-2 taken each week of the 3 weeks and you will see very interesting patterns. If the her-2 dosing schedule is right for you, your her-2 numbers will most likely stay in the single digits and not vary much from week to week...going up a tad only on the day of your next herceptin infusion. If, however, your disease is very active and is progressing faster than the every 3 - week schedule can contain, if you take the marker each week of the three, you will see a high number before your herceptin, going down a bit the first week, then bouncing right back up the second week and then going higher. If you want to keep progression to a minimum, you must some how (it will not be easy) convince your onc to give you either enough herceptin to stay ahead of progression or you will have to take it more frequently, and even then at a higher dose until you get the numbers back under control...naturally, this is not accepted dogma, just what I have seen happen inside me and others with her-2 mets over time. If you don't have active her-2 disease or her-2 mets, the serum her-2 marker may not be too exciting for you..smile...just hanging around 7 all the time, regardless of when you test it in relation to when you took the herceptin. However, especially if you are ER - and PR-, you will still want to check it routinely (whatever routinely may mean for you) just to be certain that it isn't creeping up. In my experience, when the her-2 becomes reactivated, this number will leap, up to three weeks SOONER, than even the CA 27/29 and for me any way...the serum her-2 marker was the very first indication of progression.
It is important to KNOW these numbers on a regular basis, regardless of what your oncs tell you. Sorry to be so outspoken about this issue, but it bothers me that many oncs try to withhold this test from us. Hello, we are very sick and many consider us to be terminally ill. Why would anyone want to withhold anything from us that could even possibly help in some small, even if categorically unproven, way??? is beyond me....sighhhhh.
AGAIN...Michele, WAY TO GO...I am pretty sure my PTEN is not a problem in my case as I respond very well to herceptin alone, but I would love to ask these folks to test for some other things...I am really getting interested in the C-myc as it too is very much involved in intracellular h. pylori colonization and as I suspect that folks like me most likely over express this one. Did you see in the San Antonio data that Joe put up on the board that folks with c-myc overexpression did the worst with traditional chemo??? YES, YES, wink, you know where I am going with that one...smile..
Take care,
Gina
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