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Gina · 11-12-2005, 04:00 AM

CLT ANN writes: "From what I read about Herceptin, it should couple with stray cancer cells and cause them to die. I really see no reason for the inclusion of chemo agents in the scheme. The oncs said that chemo has a synergistic effect, making Herceptin working better. It is only because all the reported results were done with chemo agents so far. Anyway, in my case, I will go for Herceptin without chemo."

Yes, YES, YES...what most people STILL don't understand is the tremendous power of using HERCEPTIN alone...at the right dose and frequency of course--this is the way I have always taken it...not having any toxic chemo since 1998--using only herceptin alone with excellent results and high QOL and very little damage to my bio-chem or to my person, as herceptin alone is not very damaging to anything but cells over-expressing her-2 receptors. Though it does not exactly "cause them to die" --it does tag or MARK them for destruction by our own immune systems...at least that is one popular view of how it may work that I find the most plausible...anyhow...

There have actually been A FEW limited studies..not widely published so far (most likely as not to ruffle feathers of the more toxic chemo industry)...that clearly show that the HERCEPTIN can actually be MORE effective when used ALONE than when taken with chemo...in fact, many of the early studies "CLAIMING" that herceptin taken with chemo was more effective have now been found to have been fatally flawed. This was primarily due in the beginning to non-her-2 patients being included in the studies...here is what happened. In the studies with herceptin and chemo...the herceptin caused improvement in a considerable number of folks who turned out to actually be her-2 positive while the chemo actually hit a few of the others who were not her-2 positive--causing a larger pool of respondents. On the other arm...the herceptin ONLY arm...the Herceptin merely "appeared" to do worse as it ONLY hit the folks who were her-2 positive and did nothing to help the folks who were her-2 negative...which falsely gave the idea to everyone that "HERCEPTIN plus chemo" was better--which is certainly NOT always (if EVER) the case. But unfortunately...for whatever reasons, these early studies..."stuck" in every one's mind...sort of like a popular myth. Later studies, using herceptin ALONE with all her-2 positive patients...actually in some instances out-performed the other arms that coupled Herceptin with various chemo-toxic agents...no need to take my word for...google the studies your self...and you will see which chemo -combos were out-performed by Herceptin alone and I am not joking....unfortunately, many of these less that ideal chemo combo cocktails are being given to us still...many to folks on this site...sighhh.

That said, getting back to modern day Hamlet question of "To Herceptin or to not Herceptin"... I would encourage us ALL instead "NOT TO GUESS" ...in this day of high-tech biotech and advances in all kinds of testing, there is NO need to wonder if you have active her-2 and need to do something about it or if it is NOT active, why put yourself through all the agony?? Trust me, as GREAT as HERCEPTIN is...I would not be taking it unless I knew for certain THAT I ABSOLUTELY HAD NO OTHER CHOICE and unfortunately, in my case with liver, pelvic and bone mets on occasion, I have no real option at this time but to keep taking it, regularly on a schedule and at a dosage that is RIGHT for me.

I know the tumor markers are controversial to many and are certainly not full-proof...but let's cut to the chase...think about what being positive for her-2 really means at the cellular level...there is NO medical mystery here. If you are positive for her-2 and are actively over-expressing the her-2 protein, it will be in your bloodstream...plain as day..there is NO missing it...it is measurable...you can find out with a simple $126 blood test called the serial serum her-2 test ...for more info, see the blood test section on this site. Measure the number consistently over TIME..key point..and see what it is doing...if it is see-sawing back and forth between 5 and 10...not to worry...if it starts creeping up, uP, UP...become concerned but do not jump to too many horrible conclusions...look at your WHOLE bloodwork picture. What is your CA 27/29 doing..is it see-sawing back and forth between oh..say 3 and 13.??? If so, probably no big deal..is it consistently higher than 13, 14, 15, is it going higher and higher??? 22, 27, 35, 40, 70-- GET worried... Now, look at your CBC...look at it CAREFULLY...are your grans/neutrophils over 70...or steadily creeping up, up, uP into the 80's...are your lymphs dropping...less than 30, then, less than 20..once in the teens..big problems could be mounting. What about your platelets..less than 300??? take more magnesium tonight and call me in the morning...smile..Now, look at your chemistries...how HIGH is your GGT??? over 90 you've got trouble in your back yard...look at your liver enzymes along with your ALK PHOS...all going up, uP UP, and away...welcome to my world...you have active disease, probably in the liver..bones..or both, or worse. Chart this data yourself and take it to an onc who specializes in Her-2 mediated disease and get on a steady regimen of Herceptin right away if you need it...do not pass go...do not stop to "phone a friend"..smile...just get to the Herceptin as fast as you can. On the contrary..if you follow all these things and are scanned regularly and all seems well...your numbers are well in the middle to lower end of their ranges...your CBC and Chemistries are BEAUTIFUL, your scans are clean, ...you are eating well, walking well, sleeping well, LIVING well, FEELING WELL..pat yourself on the back and be happy..but NEVER become complacent. I have lived through so MANY remissions from this illness (7)...only to be brought quickly back to reality again and again to the same mud hole...do not follow my example, when I first had it -- we didn't know much about Herceptin or how to use it and I would take myself off of it for a year at time..only to fall prey to the illness again and again..eventually learned my lesson, hard-headed as I am..smile..but today, we can no longer hide behind "the mystery that is less and less of an enigma and more and more about just doing GOOD basic research" . This is NOT rocket science folks...educate yourselves and become your own best advocates, stay on top of your own case histories...keep binders with all your blood results handy so you can match and compare numbers at a glance, read this web-site frequently for lots of real information and you will learn to get better and better at being Her-2 positive...whatever that means for you...which in many cases..will be something different from what it means for other folks...yes, it is true, lots of folks who are her-2 positive eventually experience mets...but not every body will. And now, what used to be a sure death sentence, is becoming more and more like just a chronic disease. Think of yourselves as being simply "canceretic" and follow the diabetic model...use your tumor markers similarly to the way folks with diabetes monitor their blood sugar and use as MUCH or as LITTLE of herceptin as is needed to keep you blissfully and completely NED...Whatever you do, don't let it get out of control, if at all possible...as I say..do NOT follow my poor example of allowing myself to mets 7 times..sighh..(but hey, I learned a lot..smile smile) and sighh,

Last, but not least, remember it is your body and your life. Be your own best advocate. Be your own BIGGEST fan...smile...and count me in as your second biggest fan because we all are heroines and heros, every last one of us. Not just any soul could survive what we all have, but look around this board...we are all still here. Be proud of who you are and what you represent...which is HOPE to all present and living with this disease here and now and as positive role models for all those who come after until we finally get to the root cause of what is causing the her-2 to over-express in the first place and learn how to make the nightmare stop once and for all.

Godspeed to us all,
Gina
Gina@Comcast.net
Original DX in 1997; STAGE IV mets in 1999; 6 years and 7 months experience with Herceptin; This month marks my 8th year since mastectomy and I am STILL here...smile.

11-12-2005, 04:00 AM	#15
Gina Senior Member Join Date: Oct 2005 Location: Alexandria, VA Posts: 197	Must say I couldn't agree more with CLTAnn... CLT ANN writes: "From what I read about Herceptin, it should couple with stray cancer cells and cause them to die. I really see no reason for the inclusion of chemo agents in the scheme. The oncs said that chemo has a synergistic effect, making Herceptin working better. It is only because all the reported results were done with chemo agents so far. Anyway, in my case, I will go for Herceptin without chemo." Yes, YES, YES...what most people STILL don't understand is the tremendous power of using HERCEPTIN alone...at the right dose and frequency of course--this is the way I have always taken it...not having any toxic chemo since 1998--using only herceptin alone with excellent results and high QOL and very little damage to my bio-chem or to my person, as herceptin alone is not very damaging to anything but cells over-expressing her-2 receptors. Though it does not exactly "cause them to die" --it does tag or MARK them for destruction by our own immune systems...at least that is one popular view of how it may work that I find the most plausible...anyhow... There have actually been A FEW limited studies..not widely published so far (most likely as not to ruffle feathers of the more toxic chemo industry)...that clearly show that the HERCEPTIN can actually be MORE effective when used ALONE than when taken with chemo...in fact, many of the early studies "CLAIMING" that herceptin taken with chemo was more effective have now been found to have been fatally flawed. This was primarily due in the beginning to non-her-2 patients being included in the studies...here is what happened. In the studies with herceptin and chemo...the herceptin caused improvement in a considerable number of folks who turned out to actually be her-2 positive while the chemo actually hit a few of the others who were not her-2 positive--causing a larger pool of respondents. On the other arm...the herceptin ONLY arm...the Herceptin merely "appeared" to do worse as it ONLY hit the folks who were her-2 positive and did nothing to help the folks who were her-2 negative...which falsely gave the idea to everyone that "HERCEPTIN plus chemo" was better--which is certainly NOT always (if EVER) the case. But unfortunately...for whatever reasons, these early studies..."stuck" in every one's mind...sort of like a popular myth. Later studies, using herceptin ALONE with all her-2 positive patients...actually in some instances out-performed the other arms that coupled Herceptin with various chemo-toxic agents...no need to take my word for...google the studies your self...and you will see which chemo -combos were out-performed by Herceptin alone and I am not joking....unfortunately, many of these less that ideal chemo combo cocktails are being given to us still...many to folks on this site...sighhh. That said, getting back to modern day Hamlet question of "To Herceptin or to not Herceptin"... I would encourage us ALL instead "NOT TO GUESS" ...in this day of high-tech biotech and advances in all kinds of testing, there is NO need to wonder if you have active her-2 and need to do something about it or if it is NOT active, why put yourself through all the agony?? Trust me, as GREAT as HERCEPTIN is...I would not be taking it unless I knew for certain THAT I ABSOLUTELY HAD NO OTHER CHOICE and unfortunately, in my case with liver, pelvic and bone mets on occasion, I have no real option at this time but to keep taking it, regularly on a schedule and at a dosage that is RIGHT for me. I know the tumor markers are controversial to many and are certainly not full-proof...but let's cut to the chase...think about what being positive for her-2 really means at the cellular level...there is NO medical mystery here. If you are positive for her-2 and are actively over-expressing the her-2 protein, it will be in your bloodstream...plain as day..there is NO missing it...it is measurable...you can find out with a simple $126 blood test called the serial serum her-2 test ...for more info, see the blood test section on this site. Measure the number consistently over TIME..key point..and see what it is doing...if it is see-sawing back and forth between 5 and 10...not to worry...if it starts creeping up, uP, UP...become concerned but do not jump to too many horrible conclusions...look at your WHOLE bloodwork picture. What is your CA 27/29 doing..is it see-sawing back and forth between oh..say 3 and 13.??? If so, probably no big deal..is it consistently higher than 13, 14, 15, is it going higher and higher??? 22, 27, 35, 40, 70-- GET worried... Now, look at your CBC...look at it CAREFULLY...are your grans/neutrophils over 70...or steadily creeping up, up, uP into the 80's...are your lymphs dropping...less than 30, then, less than 20..once in the teens..big problems could be mounting. What about your platelets..less than 300??? take more magnesium tonight and call me in the morning...smile..Now, look at your chemistries...how HIGH is your GGT??? over 90 you've got trouble in your back yard...look at your liver enzymes along with your ALK PHOS...all going up, uP UP, and away...welcome to my world...you have active disease, probably in the liver..bones..or both, or worse. Chart this data yourself and take it to an onc who specializes in Her-2 mediated disease and get on a steady regimen of Herceptin right away if you need it...do not pass go...do not stop to "phone a friend"..smile...just get to the Herceptin as fast as you can. On the contrary..if you follow all these things and are scanned regularly and all seems well...your numbers are well in the middle to lower end of their ranges...your CBC and Chemistries are BEAUTIFUL, your scans are clean, ...you are eating well, walking well, sleeping well, LIVING well, FEELING WELL..pat yourself on the back and be happy..but NEVER become complacent. I have lived through so MANY remissions from this illness (7)...only to be brought quickly back to reality again and again to the same mud hole...do not follow my example, when I first had it -- we didn't know much about Herceptin or how to use it and I would take myself off of it for a year at time..only to fall prey to the illness again and again..eventually learned my lesson, hard-headed as I am..smile..but today, we can no longer hide behind "the mystery that is less and less of an enigma and more and more about just doing GOOD basic research" . This is NOT rocket science folks...educate yourselves and become your own best advocates, stay on top of your own case histories...keep binders with all your blood results handy so you can match and compare numbers at a glance, read this web-site frequently for lots of real information and you will learn to get better and better at being Her-2 positive...whatever that means for you...which in many cases..will be something different from what it means for other folks...yes, it is true, lots of folks who are her-2 positive eventually experience mets...but not every body will. And now, what used to be a sure death sentence, is becoming more and more like just a chronic disease. Think of yourselves as being simply "canceretic" and follow the diabetic model...use your tumor markers similarly to the way folks with diabetes monitor their blood sugar and use as MUCH or as LITTLE of herceptin as is needed to keep you blissfully and completely NED...Whatever you do, don't let it get out of control, if at all possible...as I say..do NOT follow my poor example of allowing myself to mets 7 times..sighh..(but hey, I learned a lot..smile smile) and sighh, Last, but not least, remember *it is your* body and your life**. Be your own best advocate. Be your own BIGGEST fan...smile...and count me in as your second biggest fan because we all are heroines and heros, every last one of us. Not just any soul could survive what we all have, but look around this board...we are all still here. Be proud of who you are and what you represent...which is HOPE to all present and living with this disease here and now and as positive role models for all those who come after until we finally get to the root cause of what is causing the her-2 to over-express in the first place and learn how to make the nightmare stop once and for all. Godspeed to us all, Gina Gina@Comcast.net Original DX in 1997; STAGE IV mets in 1999; 6 years and 7 months experience with Herceptin; This month marks my 8th year since mastectomy and I am STILL here...smile.