[Gina]

Hi, Linda R..did not mean to scare you so...but I wish when I finished all my treatment the FIRST time back in '98 and they declared me "cured"--my Ca 27/29 numbers were "normal" my scans were crystal CLEAN--THAT someone, anyone would have alerted me to THE odyssey I would begin to face --completely unprepared...and talk about being a NEWBIE..smile..--only 5 months later when the cancer came back right before the radiologists very eyes first in my liver with lesions as big as "quarters, nickles, and dimes" right and left lobes, inoperable...blah blah blah...The same radiologist had just seen my liver CT in November of '98 and pronounced it crystal clean...yet, by Spring of '99, there I was...literally dying...I had endured an entire year of surgeries, biopsies, heavy dose aggressive chemos...radiation..and for what??? 5 frickin months??!!!!!...I was SO ANGRY...yes..I wish someone had thought to take a minute to share with me such a dark and terrible her-2 truth..I wouldn't have liked hearing it and knowing hard-headed me..I may have not even heeded their warnings...but at that time...there was no one...we simply JUST DIDN't know. In fact, when I finished my cut/slash/chemo/burn treatments in the fall of '98, Herceptin was not even an option...not even approved by the FDA until later that November... So that is why I jump up and down and scream and yell and irritate some folks sometimes...as I believe that when one has her-2, it is better to be for-warned and thus, somewhat "prepared". Any how...the tumor marker comparison numbers I list above you will NOT find in any study as my studies were done with comparing the markers in my own blood over the course of many years using and not using herceptin and testing many things against her-2 as a private citizen. I am not a doctor or a scientist..just a gal with her-2 who wants to try to fight back the best way she knows how.

Anyway, a lot of articles I have saved through the years are in a paper / hard copy format...remember...a lot of this not only pre-dates herceptin but the uh DIGITAL world...smile...and I don't have access right now to a scanner so I must dig for the studies if time permits as many want and should see them and actually take them in to their oncologists... but if you go online and google long and hard enough...drill down deep, you too can find them. They do exist. Think about it...somebody - somewhere would have had to test HERCEPTIN ALONE..if only in some capacity as a CONTROL...at the very least..THERE has to be data ..smile...think about it....but like I said..I believe there are OTHER REASONS...that these studies are not made more visibile...BIG PHARMA needs everyone to play nicely in the sand box..but that is just MY PERSONAL view and in no way reflects the view of any other part of this site. All the numbers I gave you are just RULE of THUMB..there is no oncologist or researcher anywhere in the world, I guess, who can corroborate my findings at this time..but these values where what I discovered during years of testing both mine and others markers with the Herceptin..without the Herceptin..with the Herceptin coupled with other non-toxic agents..etc. I figured if I were dying anyway..I might as well leave a HUGE paper trail of my demise...and huge it is..comprising at this time some 8 3-ring binders of pure raw data--that has scarcely been analysed...but enough said.

Thank you for giving me your CA 27/29 tumor marker values...and especially the CA 15-3. I am NO doctor, but actually, in truth, they look pretty darn good to me..., but do not grow complacent...watch those numbers like a hawk...if you do choose to put the "to take or not to take herceptin" issue on the back burner--when I look into my crystal ball..smile...I really don't see you checking out due to Her-2 any time soon, but remember, the numbers are not 100 percent accurate for EVERYONE...and unfortunately, there is some hidden aspect of this disease that somehow can leave us vulnerable to its rearing its ugly head when we least expect it or have time to deal with it (again) in our lives. I personally have watched my own numbers LEAP from months of being normal into the hundreds in only a couple of months...very scary..very painful...so you must BE CAREFUL!!!! Please believe me when I say that my heart is in the right place...I feel SO BAD for you girls hanging out there in limbo and am just trying to give you folks in that horrible "NO MAN's LAND area of early stager her-2" the best guide I can--using the only tool I have and that is my own personal experience wrestling with this illness on my own--8 years is a long time in one way, but granted..it is NOT very much..as none of my ideas are proven..it is NOT probably scientific enough..but it is something you can at least TAKE into consideration along with as many other variables as you can find when making the final decision. Of course, I could easily make the other argument that if the Herceptin is available to you now, TAKE IT as some studies are showing that taking the extra year may be MORE like a cure in the long run or at least take you 3 years further out...although I think all that is still controversial...as I work with folks who took similar regimens followed by a year of Herceptin 4 years back and guess what?? some have relapsed...4 years out..so it is still too soon to say "cure"..and in truth..if you follow a few tips from this site on taking herceptin correctly --it is not that toxic..I don't even have or use a port...I have a great quality of life on Herceptin alone...you can too, if that is what you decide to do or you can wait until it is clear that you are going to need it--meaning those CA 15-3 and 27/29 numbers start creeping up UP UP/you start feeling something ouchie...or your scans pick up something...but by then, most likely you will be as I now am in a mets situation...FINAL WORD: It is probably better to prevent than to be forced to treat..but it is--your call. As I ALWAYS remind each of us..it is YOUR BODY and YOUR LIFE...Godspeed to us all and goodnight, Gina L. Popp