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Old 11-19-2005, 11:35 AM   #1
Kim in CA
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Question Her2 Serum/Tumor Marker question

Hi Everyone,

I can't believe it, but in my excitement over the good news on my brain met, I completely forgot to ask my doc about getting the Her2 Serum test done at my last visit this week! I have already been getting my Tumor markers checked every 3 weeks when I get my Herceptin and have kept a chart so I can watch for any patterns. My Dr. always runs the CA15-3 and CEA tests. I was just wondering why some of you get the CA 27/29 instead of the CA15-3?


My tumor markers have always been a pretty accurate gauge of whats going on with me so far, but I'm just curious if the other test would be better. My CA 15-3 seems to stay around the 17-21 range, with an occasional spike to about 25(which it is doing right now). The normal range is from 0-31. My doc said that if my markers ever got down into the single digits, and stayed there for a long time, he would be comfortable letting me go off the Herceptin. They have never been in the single digits since we started testing them in 1997, so it doesn't look like I will ever get there.

Anyway, I'd value your input on this and appologize if this topic has already been discussed.

Best Regards, Kim in CA
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Old 11-19-2005, 12:10 PM   #2
AlaskaAngel
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CA 27.29 vs CA 15-3

Originally our small local hospital used the CA 27.29 so I had a track record with that, and then the hospital switched to the CA 15-3 without doing both tests simultaneously for me so that I would be able to compare, so I wasn't too happy with that.

Because I have found larger facilities that offer major cancer center treatments to be more reliable in general, the fact that the centralized cancer center in Seattle where I had my surgery uses the CA 27.29 tends to make me a little suspicious that it might be better than the CA 15-3 and that the substitution here in my home town might be economy measure of some kind -- but take that with a grain of salt.

A.A.
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Old 11-19-2005, 01:32 PM   #3
StephN
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Talking Which markers & why

Hi Kim -
Glad you were feeling so grand that you forgot something important! That IS a switch, isn't it?

From day one I had the CA27-29 marker test - that is five years ago. I had not heard of the 15-3 until later when I started looking at some cancer sites and reading Dr. Susan Love's book.

I asked my med onc at a visit what the difference was. He said they feel here that the CA27-29 is a newer and more accurate test. That is what the lab set up with now and that and CEA are all they use for me at this time.

Oh - I did ask for a CA-125 just for the heck of it. Had it checked twice and the number was the same and well into normal range.
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Old 11-19-2005, 03:38 PM   #4
Sheila
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Kim
I get both....I guess they want to cover all bases. Most Dr's prefer one or the other..
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is fighting some kind of battle."



Hugs & Blessings
Sheila
Diagnosed at age 49.99999 2/21/2002 via Mammography (Calcifications)
Core Biopsy 2/22/02
L. Mastectomy 2/25/2002
Stage 1, 0.7cm IDC, Node Neg from 19 nodes Her2+++ ER PR Neg
6/2003 Reconstruction W/ Tissue Expander, Silicone Implant
9/2003 Stage IV with Mets to Supraclavicular nodes
9/2003 Began Herceptin every 3 weeks
3/2006 Xeloda 2500mg/Herceptin for recurrence to neck nodes
3/2007 Added back the Xeloda with Herceptin for continued mets to nodes
5/2007 Taken Off Xeloda, no longer working
6/14/07 Taxol/Herceptin/Avastin
3/26 - 5/28/08 Taxol Holiday Whopeeeeeeeee
5/29 2008 Back on Taxol w Herceptin q 2 weeks
4/2009 Progression on Taxol & Paralyzed L Vocal Cord from Nodes Pressing on Nerve
5/2009 Begin Rx with Navelbine/Herceptin
11/09 Progression on Navelbine
Fought for and started Tykerb/Herceptin...nodes are melting!!!!!
2/2010 Back to Avastin/Herceptin
5/2010 Switched to Metronomic Chemo with Herceptin...Cytoxan and Methotrexate
Pericardial Window Surgery to Drain Pericardial Effusion
7/2010 Back to walking a mile a day...YEAH!!!!
9/2010 Nodes are back with a vengence in neck
Qualified for TDM-1 EAP
10/6/10 Begin my miracle drug, TDM-1
Mixed response, shrinking internal nodes, progression skin mets after 3 treatments
12/6/10 Started Halaven (Eribulen) /Herceptin excellent results in 2 treatments
2/2011 I CELEBRATE my 9 YEAR MARK!!!!!!!!!!!!!
7/5/11 begin Gemzar /Herceptin for node progression
2/8/2012 Gemzar stopped, Continue Herceptin
2/20/2012 Begin Tomo Radiation to Neck Nodes
2/21/2012 I CELEBRATE 10 YEARS
5/12/2012 BeganTaxotere/ Herceptin is my next miracle for new node progression
6/28/12 Stopped Taxotere due to pregression, Started Perjeta/Herceptin
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Old 11-20-2005, 10:53 AM   #5
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Hi Kim~
What great, grand, wonderful news for you! Successful treatment for one of us is a VICTORY for ALL of us!
I may be mistaken but, I think Joe posted an article on study results that showed the Her2Serum test to less reliable than thought...? I guess I should do a little searching here on this site, but maybe Joe can give us a quicker answer?
I've always been followed w/the 27.29 test-it doesn't seem to be truly accurate for me-at my highest tumor load, w/ mets described as "innumerable, immeasureable" my TM's were only 68-my onc said she would have expected it to be in the 100's! But it does seem to move in the general direction-stable when I'm NED, up a little whenever the stinky spot pops up.
Celebrate your wonderful news, You deserve it!
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Old 11-20-2005, 10:57 AM   #6
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ps-that was me-Jessica-that posted the most recent "unregistered" response-I'm in Hawaii for Thanksgiving & I'm using my dad's computer, so I wasn't logged in.
Aloha!
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Old 11-20-2005, 06:41 PM   #7
Sheila
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Jessica
We are all jealous...enjoy, you are lucky.
__________________
"Be kinder than necessary, for everyone you meet
is fighting some kind of battle."



Hugs & Blessings
Sheila
Diagnosed at age 49.99999 2/21/2002 via Mammography (Calcifications)
Core Biopsy 2/22/02
L. Mastectomy 2/25/2002
Stage 1, 0.7cm IDC, Node Neg from 19 nodes Her2+++ ER PR Neg
6/2003 Reconstruction W/ Tissue Expander, Silicone Implant
9/2003 Stage IV with Mets to Supraclavicular nodes
9/2003 Began Herceptin every 3 weeks
3/2006 Xeloda 2500mg/Herceptin for recurrence to neck nodes
3/2007 Added back the Xeloda with Herceptin for continued mets to nodes
5/2007 Taken Off Xeloda, no longer working
6/14/07 Taxol/Herceptin/Avastin
3/26 - 5/28/08 Taxol Holiday Whopeeeeeeeee
5/29 2008 Back on Taxol w Herceptin q 2 weeks
4/2009 Progression on Taxol & Paralyzed L Vocal Cord from Nodes Pressing on Nerve
5/2009 Begin Rx with Navelbine/Herceptin
11/09 Progression on Navelbine
Fought for and started Tykerb/Herceptin...nodes are melting!!!!!
2/2010 Back to Avastin/Herceptin
5/2010 Switched to Metronomic Chemo with Herceptin...Cytoxan and Methotrexate
Pericardial Window Surgery to Drain Pericardial Effusion
7/2010 Back to walking a mile a day...YEAH!!!!
9/2010 Nodes are back with a vengence in neck
Qualified for TDM-1 EAP
10/6/10 Begin my miracle drug, TDM-1
Mixed response, shrinking internal nodes, progression skin mets after 3 treatments
12/6/10 Started Halaven (Eribulen) /Herceptin excellent results in 2 treatments
2/2011 I CELEBRATE my 9 YEAR MARK!!!!!!!!!!!!!
7/5/11 begin Gemzar /Herceptin for node progression
2/8/2012 Gemzar stopped, Continue Herceptin
2/20/2012 Begin Tomo Radiation to Neck Nodes
2/21/2012 I CELEBRATE 10 YEARS
5/12/2012 BeganTaxotere/ Herceptin is my next miracle for new node progression
6/28/12 Stopped Taxotere due to pregression, Started Perjeta/Herceptin
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Old 11-20-2005, 11:43 PM   #8
Gina
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Thumbs up Hi, Kim in CA and Jessica in Hawaii

I always appreciate learning these exact case histories the way you both have so clearly presented. According to my own unpublished research, when the CA 27/29 is around 75, in Jessica's case 68, in practice, the Serum her-2 is much higher..sometimes double or even triple what the CA 27/29 is--meaning that a the Serum her-2 could have been between 150 and 225!!!!! ..that is why I have been repeatedly proposing that the "normal range" of the CA 27/29 be dropped in half..something like zero to 16 or even 15 as it has been my experience that in cases of active her-2...especially mets...that the serum her-2 does not drop down into its normal range (below 15 or 12, depending on the lab), until the CA 27/29 is well below 15. In my case, I have been able to get the CA 27/29 down into the single digits and see the her-2 fall into normal range..but as I unfortunately have a history with many mets in many places..keeping it there is not easy...and just because you get it there once is NO indication that you can keep it there...especially without the herceptin...fyi...these numbers move much more quickly and much more often than the oncs seem to realize...but the only way you will know for sure what they do INSIDE YOUR OWN BODY is to follow Kim's excellent example and start charting your own...keeping in mind, you must be very careful when you draw them...the very best time is just a minute or two PRIOR to your next herceptin infusion as that is when the serum her-2 numbers will be the highest ... and that is the number that you most need to know.... Remember...for folks with mets...the serum her-2 numbers are always increasing all the time in a steady pattern that looks like a diagonal line..the steepness of the curve will note how rapidly the serum her-2 is increasing--the steeper the line..the faster the growth...the herceptin just keeps KNOCKING the her-2 back...we must remember that where her-2 mets is concerned...herceptin is merely a control..not a cure. Think of it as following a diabetic model where the serum her-2 number is like the blood glucose number and the Herceptin is like the insulin that brings the blood sugar back into control...in actual practice, that is how Herceptin seems to be working...again..we are talking active disease mets patients here as those are the ones on whom I have the most data. BUT NO matter what niche of her-2 you fit in..start charting your numbers...and get to know what they mean for you...keeping in mind they are not full-proof...and need to be part of the whole diagnostic picture, including scans, chemistries, pain sensations, tumor size, etc., but for many of us, knowing the numbers can be a big help. In 7 times of mets, my numbers have never been wrong and often picked up on a problem long before it could even be seen on a CT scan...fyi...Gina
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