Attempting to increase rate of Herceptin efficacy,decrease rate of Hercptn resistance

[Gina]

every one's cup of tea due to its somewhat technical nature..I just wanted to say..the high level of exchange of ideas of free flowing brain-storming was superb.

I would love to get together in person with all who contributed sometime just to brain storm about these and so many other her-2 related issues.

Robin, in the early days, as Herceptin was so new and "resistance" to more traditional chemos quite common..., I must confess, that one reason I hesitated to take more herceptin than absolutely necessary was just that...I was worried about potential "resistance" no matter how you define that. The other reason was in the early days, no one really KNEW for sure what all the possible side effects of taking herceptin would eventually turn out to be, and as most of us were figured to be dead in a month or two anyway..NO ONE EVEN TALKED about the long - term side effects.

Fortunately, as we all know, the science behind HERCEPTIN was very sound and actually, thankfully, I encounter very few folks who really have any major problems caused by the herceptin. However, even early on, besides heart issues, there was another concern about herceptin's possible negative effects on the reproductive tract as in pelvic mets and increased CA 125's which as you know are often indicative of ovarian cancer. I only learned this early on because one of the gals who was detailed to do my complicated blood draws had been working as a cancer tumor marker researcher in a major research hospital where herceptin was being tested in various ways and one of the "complications" that kept showing up was an increase in CA 125 for women taking herceptin over extended periods of time...although, interestingly, at least in the group being studied...this increase in CA 125 did not always progress to ovarian cancer...but was common enough as were "PELVIC METS" to be noted.

Over the years, especially when I would take some herceptin in a row, I would get from time to time "complex" cysts on my ovaries. This worried me to no end. So much so, I even agreed to exploratory surgery, knowing the risks of worsening mets that often accompany surgery. What they found and took plenty of color pictures of ... was a perfect internal reproductive anatomy...absolutely perfect...samples taken everywhere revealed INFLAMATION but no cancerous or even pre-cancerous cells..., but unfortunately, no "cause" of the inflamation and highly vacuolated cells could be determined via pathology.

The color shot of my liver, which of course, was metastatic at the time...revealed the unexpected white lace -like patterns of the nearly 2-D Her-2 lesions that were there at the time...resting gently on a bed of otherwise absolutely red and healthy liver. It was so healthy, the surgeon, knowing of my past history with 12 metastatic liver lesions, could not believe its fortunate condition.

As for worrying about my ER-PR- cancer turning hormonal positive...it is strange that from my her-2 mediated disease, I worry more about what will happen to me when I enter natural menopause, as in my case, my continuing to produce estrogen has been one of the number one KEY factors that help keep my brand/variety of her-2 in control...I tested this many times, by seeing my markers slightly rise as my estrogen levels would drop before my cycle...also, when I had my primory 5cm tumor...even though none of my doctors would listen to me...it got much worse and grew more the week BEFORE my period as the estrogen levels dropped...you see, I have a completely different theory of estrogen from most folks in the cancer world. I actually think it is a good thing with my type of her-2 as estrogen has an inverse relationship to her-2...at least in my body--but is documented also in the literature...when estrogen is at normal levels (not excessive as I have never had that problem), but when they are at normal levels..her-2 tends to stay in check...when they drop, that is when I have to work harder to keep the markers down...

I have said this before, but I do believe a good percentage of us on this site share a common ancestor that goes WAY back to the early pre-out-of Africa settlements in eastern europe...we can trace our lineage back to a time when there were no grandmothers --to a time of perhaps something like a self-destruct gene..a time when "hominids" resembled their cousins much more closely, meaning that once the time of reproduction had past, so had bio-chemical usefulness and thus, early death was just the natural order of life. Once estrogen levels started to drop, the her-2 would become unchecked and relatively quickly, the 30-something female would simply expire. For a long time I looked at her-2 as a remnant of some sort of self - destruct mechanism, but now I am not so sure. Still, for me, I progress less actively when my own estrogen is not inhibited. I progress moreso when it is chemically inhibited..as I did at various times in 1997 and 1998 while taking very high doses of CAF and taxotere...which AS MANY OF US on this site "know" causes chemically induced menopause...naturally as I was so young back then...once the chemo stopped...everything just went back to normal..my periods are regular and mostly like clockwork ever since.

So although I realize I am THE ABSOLUTELY ONLY person in the world who finds estrogen with her-2 a very USEFUL combination..smile..I will just stop before the tomatoes start to be thrown at me...smile.

As far as to using herceptin differently from most folks, you have to understand that above all things I consider myself an independent thinker and do not bend easily to the opinions of others..nahhhhh...giggle...giggle....even though many times--in many areas of my life..not just cancer, I have had to pay a very high price for this free thinking, so when my first onc saw the liver spots and told me I would be dead in about 2 months and to find a family for my son to live with and put all my affairs in order...I had difficulty believing "HIS VERSION" of reality as I sat there holding a PERFECT blood chemistry in my hand...and apart from a severely inflamed liver that was causing me serious digestive difficulties, I felt--as strange as it is to say...that my general constitution was perfectly HEALTHY and some how in balance and my intuition told me that what I was fighting was a much more LOCALIZED event than the terms metastatic cancer tend to suggest...which really means, of course, systemic. So I had a real difficulty merging the reality of the "world view" of my onc with the reality of what my own body was telling me....I also had a REAL problem with the theory "that MY genes were all messed up and this is what was causing my cancer"...for many reasons, it just did not "seem" to me to be the case. Anyway, no one will understand what I am trying to express, but somehow, I just thought that something else -- an outside force, an external first cause-- was at work here and I worried that like Helen Longino's LANDMARK work, "Science as Social Knowledge" maybe the entire cancer paradigm was based on one or two terribly wrong first assumptions, and because we were all so embedded in the paradigm we just couldn't see it. So, like Ockham's razor, I decided, then and there, that I would do the best I could to wipe my mind clean of everything I had ever heard, read, learned or been told about all that it means to have cancer and I would start fresh, using my own life experience and my own blood work as my lab.

What I found was pretty much any thing we had be led to "believe" about cancer, did not hold up to empirical testing and measuring...with very little effort and very few resources, I found that I could pretty much find at least ONE FALSE example of every TRUISM ever taught about this hideous disease...to me, the empirical data and my own poignant reactions to my experiences and later from the detailed observations of others with her-2 and other cancers became my only truth. I pig-headedly and dogmatically began to follow a very simple and pragmatic path. If something "worked" and could be tested and measured and proven of benefit, I continued with it. If I tried something, no MATTER HOW FABULOUS it was "believed" to work against her-2 or cancer, if it brought me personally no benefit that could be measured, I didn't waste my time, energy, or money. If I tried something that outright made me worse or nearly killed me (this happened on occasion as you must remember I tested many things early on BLINDLY), well, I just simply didn't test them or use them again, this included saying NO to more typical "chemo" concoctions and combos that onc after onc would offer me again and again and again...sighh... as I said above, I told my first onc after the first rounds with chemo which only bought me about 5 months of remission that, "Even if I died, I would not follow that route again." WHY?? because...HELLO...obviously, it didn't work for me.

Herceptin, of course, offered a completely different mechanism of action, one that was much more complementary to my style and way of thinking. For me, personally, someone with a history of robust health and ultra - high energy levels with an equally active child to raise alone, the price chemo levied, was way too high...also remember, chemo today, is not at all like it was back in 1997...I understand today the dosing is lower and there are more 'drugs' to control the nasties...not sure that is a good thing, but it is what it is.

Besides, I was still young and optimistic. I had very much wanted a large family as I am crazy for kids and get along well with them as I am just an over-grown one myself... I could not bear parting with my reproductive capability and besides I told myself, even back then...just wait it out...they have already invented herceptin...surely the next "BIG" breakthrough will be long before my biological clock ticks its last tock..., but...I was wrong...I waited 6 years from November, 1998 when Herceptin was first approved by the FDA until late in 2004 it sadly began to dawn on me that I was turning 40 in that same year, and though happy that I was to be doing so, I realized that my clock was nearing its last tock and that for me, there not only would be no cure to arrive like a super hero in the nick of time to save the day, but worst of all no daughter to beget...something given my heritage and the importance of passing on my mitochondrial DNA that was very important to me...just another thing in a long line of so many, that having her-2 mediated disease had taken away from me. But worst of all, as bad as having this disease was for myself..., what I could not get off my mind was the horrors it was doing to others in my 'clan' others like me...perhaps, going way back...even others of my own blood. I often thought on that quote originally from Plato I believe about the sacrifice of the one for the many, but if you are already on the her-2 fast track to destination death, it becomes not a sacrifice, but merely the only path unbarred.

It is now 2006. In a few more days, I will turn 42. I am profoundly grateful at my nearly unprecedented her-2 longevity, but at the same time, dismayed that now even two MORE years have passed, and yet, I find myself still tethered to the exact same spot, dragging my Herceptin infusion behind me.

We can not keep waiting. We must come together and solve the puzzle for ourselves. If we wait for science, as a very wise man, Stu Kaufman, author of "At home in the Universe" and the key promoter of complexity theory and self-organization of matter once predicted, it could take another 20 years.

I have lost nearly a decade to this disease. I will not stand by silently for 2 more. There has to be a better way. There is and together we can find it.

OK..ok...more tomatoes..ooh and rotten eggs..smile...time to say goodnite,
Gina