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Ok, Girls...smile..I HAVE to put input into this thread...
I really, honestly, truly, positively can tell you...it MAKES no difference HOW MANY MONTHS you are out from treatment...what you took...how long you took it...blah, blah, blah...what matters is DO YOU HAVE HER-2??? Is it active NOW??? Is it, even as we type to each other rising in your blood stream, just lurking there ready to set off all sorts of nasties???? I just can't get my head wrapped around the fact that apparently, the majority of the onc's out there are not even regularly monitoring your CA 27/29 and serum Her-2 levels together. The bottom line, though, is if YOU know at any point during these nightmares we have all experienced that YOU ARE HER-2 positive, you should be getting HERCEPTIN...period dot. I can not make it any plainer. For folks like us, right now, it is better than sliced bread. Still, I don't recommend over-doing a good thing. INSIST that your numbers are charted regularly. Take only as much Herceptin as frequently as necessary..too much can be damaging. Remember, so what if your markers were taken 5 months ago when you stopped CA or whatever and were "normal" . One number here or there means next to nothing...The CA 27/29 can be in the normal range, less than 38 and your serum her -2 can be over the moon...trust me...I have found out the hard way and suffered many needless mets because of this (original DX '97, mets and Herceptin alone since '99). Unless your CA 27.29 is consistently hovering around 9 and 10, GET CONCERNED...your serum Her-2 is worse and if you have enough her-2 receptor filled cells to be dumping the protein into your bloodstream, you have to get moving. You can drag this illness out many years...but YOU MUST STAY AHEAD of the her-2 protein over-production...remember HERCEPTIN is NOT a cure, merely a control...Think of it like insulin for Diabetics...As long as the diabetic person takes adequate amounts of insulin, he or she will put off the ravages of this horrible disease for many years...but if they don't take their insulin....regularly...well, we all know what happens...Tell your oncologists that where herceptin is concerned you want to follow the Insulin model. Fortunately, no need to take blood several times a day as many diabetics are forced to do...a simple blood test PRIOR to each dose of Herceptin is more than enough. DO NOT have the blood draw immediately after HERCEPTIN as sometimes the assaywill pick up the herceptin as her-2 and your numbers will LOOK HORRIBLE!!!...ALSO remember ONE number does not mean much by itself...it is when the numbers are charted OVER TIME that you begin to understand what is really going on. FOLKS, this is the 21st century...THERE IS NO NEED TO GUESS...as far as the difficulty being forceful with the onc's (who sadly don't KNOW what do in many cases...sighhh, not their fault, though, and many do the best can they can...) just remember this one thing: IT IS YOUR BODY, the ONLY one you will get in this dimension anyway, and it is YOUR LIFE. Gina, over and OUT...smile.
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