UK using Bayer Serum to test for HER2+

[RhondaH]

This is a very interesting article and a good explanation of use of the Bayer Serum AFTER tumor removal.

http://www.medicalnewstoday.com/medicalnews.php?newsid=32529#

Rhonda Hoffman

[Maryanne]

Rhonda.

Thats so funny that you just posted this today as I had herceptin today and asked my onc if she does the Bayer Serum test...she had to go look it up LOL
as she had never heard of it. She came back to me about an hour later with a few print outs and told me it was only for metasatic patients and not myself.
Guess she doesnt have any metasatic patients either! LOL

I am going to print out your post and bring it back to her in 3 weeks.

Hope your doing well and breathing a little easier.

My prayers are with you as well as your co-worker

Your BREAST friend,
Maryanne

[Gina]

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

[uma]

Gina,
Special thanks to you, for all the valuable and excellent info you have given. In my case, I have completed all the chemos, rad and 52 weeks Herceptin just now. My CA27.29 is Ok according to my onc. Your info has prompted me to go for the Bayer Her2 serum test. But, I do not know which lab to go to. I live in Arlington, Virginia. Can you please give me the lab name (location) you got this wonderful test done ?. From your info, I know they must be doing a correct test for Her2. I want to go to a lab, where this test is done with meticulous care, such as yours. My Onco never told me this test. I wonder why they all do not know this like you do.

Regards,
Uma

[Gina]

Yes, Uma, I think your case is ONE that would GREATLY benefit from having the extra serum her-2 test done as you are really on the border line with the CA 27/29 around 18...I would suspect that your serum her-2 would be just slightly elevated at this point..probably no more than lower 20's but still, it would be a good number to know...also, as the CA 27/29 lags behind the serum her-2 by about 3 weeks...it is also possible that your serum her-2 is normal and that the CA 27/29 just hasn't come all the way down yet...even MORE reason to KNOW what the serum her-2 actually is. It is very easy to get this number taken...even if your onc won't give you the serum test, just ask your primary care physician to write the following on his or her Rx pad: "Serial serum her-2 tumor marker" with Diagnosis "follow-up to her-2 mediated breast cancer"...then take the script to the lab your insurance requires either LABCORP, there are so many in our area, or Quest, another common lab in the DC area...but any lab can do the test..it has been in the standard labcorp manual and handbook since at least 2003 or 2004...it is not complicated, but the blood does need to be put in a centrifuge and spun out and frozen..and some doc offices are not equipped to freeze it. Also, if you want a really good result, do not eat anything after midnight and do not take any supplements before you have the blood draw and have the blood drawn first thing in the morning--since you are no longer taking herceptin...you should probably do this a least once a month at first to be sure the number is not rapidly going up now that you have stopped treatment...but if you take it a couple of months and it see-saws back and forth but stays relatively low and your scans are clean..you should be fine. Also, it would also be good to have the CA 27/29 drawn at the same time. Again, all your primary care doc has to do is write it on his Rx pad. No big deal... Some doctors, though, will make you pay for it..even though if you have her-2 breast cancer it should be covered under your insurance -- except for the very early her-2 bloodwork I had to sent to Specialty labs in California, I have never had to pay for it out of pocket...but if you do, and believe me the data would be worth its weight in gold and peace of mind to you, it shouldn't cost more than $125 to $150, FYI... Don't be shocked that your onc isn't already using this bloodtest--but you could print out the article Rhonda posted and some of the other info on the test and show him...Actually, so few oncs even know it exists that it is embarrassing. There are EVEN oncs--supposedly some of the best--at Georgetown -- who don't even use them or understand how they work when so much has been researched and written about them...sighhhh. Granted, the numbers are not perfect and not full proof, but wouldn't it be better to KNOW what they are and where they go (up, down, or unchanged) to at least give you some idea of what is going on??? Instead of waiting around in the dark??? Unlike other kinds of cancers, her-2 is not so mysterious, if you are over-expressing this protein..you can measure it in your blood...please try to get the number taken with the CA 27/29 on a regular basis for the next few months or so and if after stopping the Herceptin as you just have..the numbers keep going uP UP UP...GET BACK ON THE HERCEPTIN any way you can..would be my best advice..sad smile...hope they are going low...though...keep following the advice on this site for the oleic acid, GLA, Vitamin A (for proper cell differentiation) Vitamin D (boost immune system) Zinc, makes the A and D work better together and boosts immunity, a good basic multi-vitamin, and other good stuff like a balanced diet rich in whole grains..and moderate exercise..walking is good...and you will manage this beast...smile...Take care, Gina

[uma]

Thanks Gina. I am doing all that. Now, I will put my effort for the Her2 test.
Uma