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Gina · 11-17-2005, 07:32 PM

Rhonda, YOU JUST MADE ME SO PROUD!!!! I must confess, that when I first came on this board back in July and stood on soap box after soap box about the value of tumor markers in her-2 cases, most especially the CA 27/29 and the ...smile...SERUM HER-2, from all the "blank looks" I feared I was going unheard...smile...THANKS for "hearing" me and others who have already learned the HARD way, the amazing value of systematically charting your own tumor markers.

Now, wouldn't it be wonderful if all of us could join ranks and demand from our oncs and medical community THAT WE ALL GET ACCESS to THESE NUMBERS by having them drawn on a regular basis (which as you have all heard me say by now--they work best when drawn together -- the CA 27/29 and the Serum Her-2--just BEFORE you take your next Herceptin infusion as that is when the circulating her-2 will be at its PEAK!!! which trust me...IS THE NUMBER you MOST need to know...Also, folks, for those new just tuning in to the Serum her-2 markers..don't let them draw your blood for these markers AFTER just infusing you with Herceptin or you will get a false high back as, sometimes, these tests MAY pick up the herceptin as if it were her-2...and you get this HUGE number back that won't help matters at all..trust..me..been there..done that..hee hee hee...long sigh). Also, the marker numbers may be even MORE valuable to folks NOT on herceptin at this time as I have found them to be superb indicators of whether AFTER STANDARD TREATMENT you NEED to keep taking the herceptin on a regular continuing basis or not, and if so, how much and how frequently--remember, some folks may actually NOT mets....but of course, keep in mind, that tumor markers alone may not be full-proof and may not work for every body, but at this time, it is at least something we can use until we figure out something even more precise. And I think many of you early stagers currently living in "no man's land" will UNDERSTAND me when I add, it sure BEATS what we don't have now...sad smile....

Anyway, HURRAY for the UK system to make such a GIGANTIC and empirical advance for her-2 folks. Now, if we could only get something similar going on in Australia, Canada, and the U.S., etc...we might really be on to something....REAL.

For those who have already heard the soap box, stop reading here..but for any of you new folks who are interested, here are some other tips on how to use these numbers to monitor your own health and to individualize your own dosage and frequency of using the Herceptin, if you ever need to or are already using it now. RULE of THUMB: Aim to keep the Serum Her-2 below 11 or 12...6 or 7 is ideal--like Christine. I have found, unfortunately through trial and error of allowing them to go up, UP, UP, creating horrible nasties in horrible places... that as long as the numbers stay around these low levels, there is not enough circulating her-2 to run around your bio-chemistry doing much damage. But at the same time you are watching the Serum Her-2, keep an eye like a hawk on that CA 27/29 (but remember that there may be as much as a 3 - week lag time--either way...as this number is further down stream than the serum her-2)...and despite what they tell you, that anything under 38 is "NORMAL"--don't buy it unless you KNOW for certain that your serum her-2 is OK. I can only speak for my own case (7 trials) and for a few other folks with limited testing I have followed (my testing on myself is extensive and goes back to 1997 using the CA 27/29 regularly and the Serum her-2 since 2003), but in my blood, if the CA 27/29 is higher than say, 15, odds are good that my serum her-2 is starting to edge up...about, oh, say, 17 to 19 (serum her-2 scale is less than 15 from one provider--less than 12 from another). When my CA 27/29 is --like 5--WOW, my serum her-2 is pretty low, like 10 or 11 (but mind you-- once you have had mulitple mets..it is REALLY tough to pull the serum her-2 down into the single digits--so don't be too hard on yourself at first if it is higher than you would like-you will get the hang of what to do to lower it, but it is possible to get it down to the single digits..as I have seen in other folks--especially those without mets). Some folks who really have the disease well-controlled can easily have CA 27/29's around 7 and single digits in the Serum her-2 which is fab...

Now, after watching the see-sawing interplay of these markers for years now, I personally believe the "normal" range on the CA 27/29 needs to be changed to something more like 0 to 15, instead of 0 to 38, with 7, 8 or 9 being the mid-range and anything 16 or over should be considered high.

Naturally, you NEED TO GRAPH and follow both these numbers on yourself and compare them with your scans for even more enlightment, but after a while, you will get the hang of interpreting them for yourself. It is really very easy...don't be put off by what onc's do or do not claim about the validity of them.. Instead, take the measurements yourself and SEE what the marker MEAN for you, personally. Basically, if the numbers stay low or just see-saw back and forth, back and forth between single digits and early teens...this is GOOD...but if one or both numbers start to creep up, uP, UP...this is BAD...very bad...but usually, all you need to do, if you catch it early enough--say before the CA 27/29 is over 75 and before the serum her-2 breaks 150-- is just adjust your herceptin up a bit or take it a bit more frequently and the numbers should quietly ease back down again. I can not tell you how similar this is to diabetics monitoring their blood sugar to adjusting their insulin. For those ENGINEERS out there among you..., whoever is the first person to invent one of those little INSTANT serum her-2 monitors like they have now for blood sugar levels and for taking your blood pressure will BECOME RICH...smile....NOT TO MENTION INCREASE THE Quality of LIFE and FREEDOM for all of us her-2'ers. If anyone has specific questions or already has a collection of their CA 27/29 and/or Serum her-2 numbers, but are not sure what they may mean and would like to know more about WHAT I THINK...underscore..THINK...smile, they MAY mean..feel free to send me a private message here on the site or e-mail my home at GPOPP@Comcast.net . I always love to hear others her-2 stories as you guys are teaching ME a WHOLE LOT!!! I am convinced that by sharing what we know with one another--especially in the line of empirical measurements and data, that we can speed up the whole "cure" process exponentially...smile....which for someone as impatient as I am anyway...the "process" has already been WAY TOO SLOW...smile.

I remember thinking early on, oh -- say 8 years back when I first got this disease --that all my strategy needed to be was stay alive until science figured it all out...after a FEW YEARS on THAT plan..hee hee hee...especially when nothing earth-shattering for her-2 folks has been discovered really SINCE Herceptin was approved back in 1998, I decided ..uh..ummm...I NEEDED A NEW PLAN..smile...many of you old-timers..will KNOW what I mean..chuckle chuckle...

Godspeed to us all,
Gina

11-17-2005, 07:32 PM	#3
Gina Senior Member Join Date: Oct 2005 Location: Alexandria, VA Posts: 197	Applause, Applause, BRAVO, FANTASTICO!!! Rhonda, YOU JUST MADE ME SO PROUD!!!! I must confess, that when I first came on this board back in July and stood on soap box after soap box about the value of tumor markers in her-2 cases, most especially the CA 27/29 and the ...smile...SERUM HER-2, from all the "blank looks" I feared I was going unheard...smile...THANKS for "hearing" me and others who have already learned the HARD way, the amazing value of systematically charting your own tumor markers. Now, wouldn't it be wonderful if all of us could join ranks and demand from our oncs and medical community THAT WE ALL GET ACCESS to THESE NUMBERS by having them drawn on a regular basis (which as you have all heard me say by now--they work best when drawn together -- the CA 27/29 and the Serum Her-2--just BEFORE you take your next Herceptin infusion as that is when the circulating her-2 will be at its PEAK!!! which trust me...IS THE NUMBER you MOST need to know...Also, folks, for those new just tuning in to the Serum her-2 markers..don't let them draw your blood for these markers AFTER just infusing you with Herceptin or you will get a false high back as, sometimes, these tests MAY pick up the herceptin as if it were her-2...and you get this HUGE number back that won't help matters at all..trust..me..been there..done that..hee hee hee...long sigh). Also, the marker numbers may be even MORE valuable to folks NOT on herceptin at this time as I have found them to be superb indicators of whether AFTER STANDARD TREATMENT you NEED to keep taking the herceptin on a regular continuing basis or not, and if so, how much and how frequently--remember, some folks may actually NOT mets....but of course, keep in mind, that tumor markers alone may not be full-proof and may not work for every body, but at this time, it is at least something we can use until we figure out something even more precise. And I think many of you early stagers currently living in "no man's land" will UNDERSTAND me when I add, it sure BEATS what we don't have now...sad smile.... Anyway, HURRAY for the UK system to make such a GIGANTIC and empirical advance for her-2 folks. Now, if we could only get something similar going on in Australia, Canada, and the U.S., etc...we might really be on to something....REAL. For those who have already heard the soap box, stop reading here..but for any of you new folks who are interested, here are some other tips on how to use these numbers to monitor your own health and to individualize your own dosage and frequency of using the Herceptin, if you ever need to or are already using it now. RULE of THUMB: Aim to keep the Serum Her-2 below 11 or 12...6 or 7 is ideal--like Christine. I have found, unfortunately through trial and error of allowing them to go up, UP, UP, creating horrible nasties in horrible places... that as long as the numbers stay around these low levels, there is not enough circulating her-2 to run around your bio-chemistry doing much damage. But at the same time you are watching the Serum Her-2, keep an eye like a hawk on that CA 27/29 (but remember that there may be as much as a 3 - week lag time--either way...as this number is further down stream than the serum her-2)...and despite what they tell you, that anything under 38 is "NORMAL"--don't buy it unless you KNOW for certain that your serum her-2 is OK. I can only speak for my own case (7 trials) and for a few other folks with limited testing I have followed (my testing on myself is extensive and goes back to 1997 using the CA 27/29 regularly and the Serum her-2 since 2003), but in my blood, if the CA 27/29 is higher than say, 15, odds are good that my serum her-2 is starting to edge up...about, oh, say, 17 to 19 (serum her-2 scale is less than 15 from one provider--less than 12 from another). When my CA 27/29 is --like 5--WOW, my serum her-2 is pretty low, like 10 or 11 (but mind you-- once you have had mulitple mets..it is REALLY tough to pull the serum her-2 down into the single digits--so don't be too hard on yourself at first if it is higher than you would like-you will get the hang of what to do to lower it, but it is possible to get it down to the single digits..as I have seen in other folks--especially those without mets). Some folks who really have the disease well-controlled can easily have CA 27/29's around 7 and single digits in the Serum her-2 which is fab... Now, after watching the see-sawing interplay of these markers for years now, I personally believe the "normal" range on the CA 27/29 needs to be changed to something more like 0 to 15, instead of 0 to 38, with 7, 8 or 9 being the mid-range and anything 16 or over should be considered high. Naturally, you NEED TO GRAPH and follow both these numbers on yourself and compare them with your scans for even more enlightment, but after a while, you will get the hang of interpreting them for yourself. It is really very easy...don't be put off by what onc's do or do not claim about the validity of them.. Instead, take the measurements yourself and SEE what the marker MEAN for you, personally. Basically, if the numbers stay low or just see-saw back and forth, back and forth between single digits and early teens...this is GOOD...but if one or both numbers start to creep up, uP, UP...this is BAD...very bad...but usually, all you need to do, if you catch it early enough--say before the CA 27/29 is over 75 and before the serum her-2 breaks 150-- is just adjust your herceptin up a bit or take it a bit more frequently and the numbers should quietly ease back down again. I can not tell you how similar this is to diabetics monitoring their blood sugar to adjusting their insulin. For those ENGINEERS out there among you..., whoever is the first person to invent one of those little INSTANT serum her-2 monitors like they have now for blood sugar levels and for taking your blood pressure will BECOME RICH...smile....NOT TO MENTION INCREASE THE Quality of LIFE and FREEDOM for all of us her-2'ers. If anyone has specific questions or already has a collection of their CA 27/29 and/or Serum her-2 numbers, but are not sure what they may mean and would like to know more about WHAT I THINK...underscore..THINK...smile, they MAY mean..feel free to send me a private message here on the site or e-mail my home at GPOPP@Comcast.net . I always love to hear others her-2 stories as you guys are teaching ME a WHOLE LOT!!! I am convinced that by sharing what we know with one another--especially in the line of empirical measurements and data, that we can speed up the whole "cure" process exponentially...smile....which for someone as impatient as I am anyway...the "process" has already been WAY TOO SLOW...smile. I remember thinking early on, oh -- say 8 years back when I first got this disease --that all my strategy needed to be was stay alive until science figured it all out...after a FEW YEARS on THAT plan..hee hee hee...especially when nothing earth-shattering for her-2 folks has been discovered really SINCE Herceptin was approved back in 1998, I decided ..uh..ummm...I NEEDED A NEW PLAN..smile...many of you old-timers..will KNOW what I mean..chuckle chuckle... Godspeed to us all, Gina