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01-15-2007, 02:15 PM
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#1
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Senior Member
Join Date: Dec 2005
Posts: 98
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very bad news
Another horrible day - my birthday even. My marker which is always good for me went up twice. The problem is that the PET scan 3 days ago was clear. If I go back on herceptin now can that help? I only have one bone met that was Gamma knifed. Is there a website for only metastatic people? I'm really upset and I'd like to ask questions. Thank you, HavahJ
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01-15-2007, 02:19 PM
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#2
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Senior Member
Join Date: Jun 2006
Location: San Antonio, TX
Posts: 2,357
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Hi Havah!
My tumor markers have gone up twice also and I have had clear scans. My onc. told me he has had others do the same thing. He cautions me often that the tumor markers are just not dependable without other evidence. I surely do understand your concern. I have had a year of chemo and start radiation on Thursday. I'm doing all I can do. I'll just do the scans quarterly and watch the markers but not depend on them just yet.
Best of luck. Sorry I have no answers for you.
ma
__________________
MA in TX.
Grateful for each and every day....
Diag. 12/05 at age 60
Stage II, Grade 3, 4.5 cm primary tumor
ER/PR- Her2 +3 strongly positive
Her2 by FISH 7.7 amplified
vascular invasion
Ki67 20% borderline
Jan - March '06 Taxotere/Adriamycin X 3 to try to shrink tumor - it grew
April '06 Rt Modified Radical Mas, 7 of 9 nodes positive
April - Aug. '06 Herceptin/Taxol/Carboplatin X 8 (dose dense)
Sept - Dec. '06 Navelbine/Herceptin x 8 (dose dense)
Radiation & Herceptin Jan. 22 - March 1, 2007
Finished Herceptin Dec. 10 '08! One extra year.
Port removed August, 2012.
8 1/2 years since diagnosis! 5 1/2 Years NED!
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01-15-2007, 02:33 PM
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#3
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Senior Member
Join Date: Sep 2005
Location: Alaska
Posts: 2,018
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mets website
HavahJ, yes.
Try bcmets.org
AlaskaAngel
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01-15-2007, 02:40 PM
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#4
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Senior Member
Join Date: Nov 2005
Location: Ireland
Posts: 3,463
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Hi I also have heard these markers are very undependable and my onc does'nt do them at all for that reason.
You could try bcsupport.org and click on the recurrance site as I've visited there before and everyone seems friendly.
Please try to be more hopeful for your situation and keep fighting.
Tricia
__________________
Tricia
Dx July '05 IDC 1.9cm Triple positive 3/9 nodes positive
A/C X 4 ..Taxol/Herceptin x 12 wks then herceptin 1 yr
Rads x 36 ..oophorectomy August '06
Currently taking Arimidex..
June 2011 osteopenia/ zometa x1 yearly- stopped Zometa 2015 as Dexa show normal bone density.
Stopped Arimidex July 2014- Restarted Arimidex 2015 for a further two years on the advice of my Onc.
2014 Normal Dexa scan
2018 Mammo all clear, still NED!
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01-15-2007, 02:50 PM
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#5
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Senior Member
Join Date: Aug 2003
Location: Morris, IL
Posts: 3,507
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HavahJ
Tumor markers are not reliable for everyone...Pet CT's are a much better indicator...if your Pet was fine, I wouldn't worry about the tumor markers...many things can throw them off...many Dr's don't do them for this reason. Take a deep breath and relax....you are in my prayers.
__________________
"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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01-15-2007, 03:57 PM
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#6
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Senior Member
Join Date: Jan 2007
Location: Thornhill, Ontario
Canada
Posts: 2,320
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Hi Havah,
My onc. also does not like these markers - too unreliable he says - try not to worry too much - more important that your scan was clear. Keep the faith, hopefully the herceptin will do its magic.
caya in canada
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01-15-2007, 04:12 PM
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#7
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Senior Member
Join Date: Nov 2006
Location: Bakersfield, CA
Posts: 66
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Hi,
I understand your concerns. My markers also went up, but I also had some spots on my liver. I went back on Herceptin in November and my markers went down from 87.2 to 40.8 in two months. It wouldn't hurt to try the Herceptin.
I hope everything turns out well.
Stephanie
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01-15-2007, 04:23 PM
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#8
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Senior Member
Join Date: Nov 2004
Location: Colorado
Posts: 131
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More to come!!!
First of all - HAPPY BIRTHDAY!
Tumor markers, although and important tool for the Onc's are not as accurate as scans! With the rise in markers I'd be all over your Onc for a Brain MRI as well as a PET/CT fusion. Peace of mind is priceless!
__________________
Mel Gordon, Husband of Lisa Lowe - Queen of Love and Light and the bravest person I know!
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01-15-2007, 06:20 PM
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#9
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Senior Member
Join Date: Oct 2005
Location: Boise, Idaho
Posts: 758
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Havahj,
This is exactly why my oncologist does not routinely do tumor markers and for that I am eternally grateful because I could not tolerate the anxiety that you must be going through. I will keep you in my prayers that your PET scans are accurate.
Marlys
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01-15-2007, 11:16 PM
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#10
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Senior Member
Join Date: Sep 2005
Location: Central Coast, CA
Posts: 3,207
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Havah,
What a crummy way to feel on your birthday!
If you check out bcmets.org and have a specific question, I'd suggest direct it to Musa. You'll get many responses, but Musa is a very knowledgable advocate.
How do you FEEL? (I mean physically? - I know you are distressed right now). I agree, if you have not had brain MRI you should get that, especially if tumor markers have "always worked for you" as you say.
Having said that, I think it is good news to get a clean PET scan, and have 2 oncologists who don't use tumor markers.
Hang in there
Chris
__________________
Chris in Scotts Valley
June 2002 extensive hi grade DCIS (pre-cancer-stage 0, clean sentinal node) Mastectomy/implant - no chemo, rads. "cured?"
9/2004 Diag: Stage IV extensive liver mets (!) ER/PR- Her2+++
10/04-3/05 Weekly Taxol/Carboplatin/Herceptin , complete response!
04/05 - 4/07 Herception every 3 wks, Continue NED
04/07 - recurrence to liver - 2 spots, starting tykerb/avastin trial
06/07 8/07 10/07 Scans show stable, continue on Tykerb/Avastin
01/08 Progression in liver
02/08 Begin (TDM1) trial
08/08 NED! It's Working! Continue on TDM1
02/09 Continue NED
02/10 Continue NED. 5/10 9/10 Scans NED 10/10 Scans NED
12/10 Scans not clear....4/11 Scans suggest progression 6/11 progression confirmed in liver
07/11 - 11/11 Herceptin/Xeloda -not working:(
12/11 Begin MM302 Phase I trial - bust:(
03/12 3rd times the charm? AKT trial
5/12 Scan shows reduction! 7/12 More reduction!!!!
8/12 Whoops...progression...trying for Perjeta/Herceptin (plus some more nasty chemo!)
9/12 Start Perjeta/Herceptin, chemo on hold due to infection/wound in leg, added on cycle 2 &3
11/12 Poops! progression in liver, Stop Perjeta/Taxo/Herc
11/12 Navelbine/Herce[ptin - try for a 3 cycles, no go.
2/13 Gemzar/Carbo/Herceptin - no go.
3/13 TACE procedure
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01-16-2007, 05:36 AM
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#11
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Senior Member
Join Date: Oct 2005
Location: TAMPA, FL
Posts: 568
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Hi Havah
Happy Birthday despite the markers....
Markers do not always work for everyone. I have found throughout my 11 years that the I am sensitive to the CEA marker. When mine starts to rise, I know that something is happening. This does not apply to everyone. As said, other things can make them rise and fall. I have kept track of mine and compare and through this I have found a pattern in how mine work. I have know women whose markers have gone up but everything else was clear, so I would not worry too much about this. Just have your doctor keep a close eye on things.
I have markers drawn frequently BECAUSE we have found out that I am sensitive to that test. When done in combo with a scan and you show clear, that is a good indication that things are stable. So your onc (and yourself) should always take both into consideration (which I am sure that he does).
Try to have a wonderful birthday and CELEBRATE !!!
your friend and sister in the USA
__________________
Irene from Tampa
1996 - INFILT DUCTAL CAR.W/ LYMPH NODE INVOLVEMENT. ADRIA/CYTOXIN/5FU
1999 - RECURR. TO AUXILA AND 2 TUMORS IN LIVER
TREAT: STEM CELL REPLACEMENT/HERCEPTIN.
2002 - RECUR TO LIVER
TREAT: NAVELBINE, THEN GEMZAR, THEN XELODA.
2004 - TUMORS STILL IN LIVER
TREAT: RFA TO LIVER
STABLE UNTIL
2004 - TUMOR PROGRESSION IN LIVER.
TREAT: RESECT HALF OF LIVER.
2005 - RECURR TO LYMPH NODE OUTSIDE OF LIVER.
TREAT: TAXOL/CARPO/HERCEPTIN. FAILED ON
THIS TRIO. STARTED ON ABRAXANE.
2006 - PROGRESS WITH 2ND TUMOR GROWTH.
TREAT: AUG. BEGAN ON TYKERB/XELODA
TRIAL. CONSIDERED STABLE TO DATE.
2007 - TAKEN OFF OF TYKERB/XELODA TRIAL DUE TO
PROGRESS STARTING TYKERB/AVASTIN.
NOV 2007 - SCANS SHOW PROGRESS TUMOR GROWTH
IN ABDOM. AND TWO NEW TUMORS IN NECK AREA.
BEGAN HERCEPTIN/AVASTIN/TAXOTERE
Feb 08 - Ixempra/Xeloda
June 08 - Her/DM1 trial
"I WANT TO BE AN OUTRAGEOUS OLD WOMAN WHO NEVER GETS CALLED AN OLD LADY. I WANT TO GET SHARP EDGED & EARTH COLORED, TILL I FADE AWAY FROM PURE JOY."
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01-16-2007, 01:29 PM
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#12
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Senior Member
Join Date: Sep 2005
Location: france
Posts: 1,648
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A late Happy Birthday. January 15th is my brother's birthday also.
I agree with the others about the markers. When due to a biopsy they knew I had invasive breast cancer and where, my CA15,3 marker was 10! which is way below the normal range so I shouldn't have had cancer lol. And then after chemo - maybe even during it - it went to 30 now it's about 15. I'd trust the Petscan and your oncologist but you're right to read up and be aggressive about looking for anything.
Hope you had a nice day despite your worries.
all the best
sarah
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01-16-2007, 02:25 PM
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#13
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Senior Member
Join Date: Feb 2006
Location: Acworth, GA
Posts: 2,104
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Havahj,
I wouldn't put too much faith into the tumor marker test. Too many things can affect the results. When I was diagnosed with Stage III my marker was 15.3! Have you had a serum HER2 test done? That's what my oncologist is now relying on. I have the HER2 serum blood test done every 12 weeks.
__________________
Kate
Stage IIIC Diagnosed Oct 25, 2005 (age 58)
ER/PR-, HER2+++, grade 3, Ploidy/DNA index: Aneuploid/1.61, S-phase: 24.2%
Neoadjunct chemo: 4 A/C; 4 Taxatore
Bilateral mastectomy June 8, 2006
14 of 26 nodes positive
Herceptin June 22, 2006 - April 20, 2007
Radiation (X35) July 24-September 11, 2006
BRCA1/BRCA2 negative
Stage IV lung mets July 13, 2007 - TCH
Single brain met - August 6, 2007 -CyberKnife
Oct 2007 - clear brain MRI and lung mets shrinking.
March 2008 lung met progression, brain still clear - begin Tykerb/Xeloda/Ixempra
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01-16-2007, 04:40 PM
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#14
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Junior Member
Join Date: Sep 2006
Posts: 3
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sorry your feeling so bad
have you been on herceptin ? i have been on it for 13 months and had 2 bone nets in the spine , but herceptin has now stopped working and i am after Tykerb which is suppose to be better than herceptin but cant find a trial !
SO GOOD LUCK THEIR IS LOTS OF NEW TREATMENTS FOR US
SOPHIE
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01-17-2007, 09:22 AM
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#15
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Senior Member
Join Date: Apr 2006
Location: Wilmington, Del.
Posts: 1,126
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Happy Birthday, Havah. And many more.....MJO
__________________
MJO
IDC, Stage I, Grade 2
Oncotype DX Score 32
Her2++ E+P+, Node Neg.
Lumpectomy 11/04/05 Clear Margins
3 Dose dense AC (Couldn't tolerate 4)
4 Dose dense Taxol & Herc. (Tolerated well)
36 weeks Herceptin (Could not complete one year due to decrease in MUGA score)
2 years of Arimidex, then three years of Femara
Finished Femara May 2011
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01-18-2007, 02:24 PM
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#16
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Senior Member
Join Date: Nov 2004
Location: Colorado
Posts: 131
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Back to the top...
I just wanted to bring this post back to the top because of the recent Tumor Markers questions. The following webite does a great job of describing the CA 15-3 (and CA27.29) which most of you have had questions about. It also describes other health issues that can cause an increase in the counts OUTSIDE of cancer.
Enjoy
Love and Light
Mel
http://www.labtestsonline.org/unders..._3/glance.html
__________________
Mel Gordon, Husband of Lisa Lowe - Queen of Love and Light and the bravest person I know!
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01-18-2007, 04:05 PM
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#17
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Senior Member
Join Date: May 2006
Location: northshore suburb of chicago
Posts: 1,093
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Great article for people like me who get lost in the technical explanations that most medical sites provide. Thank you for sharing.
__________________
~Rina~
Dx:3/06 had a lumpectomy April 19, 2006
Her2+ er/pr- Stage I Grade 3 tumor size 1.4 cm, node negative
AC 4 dense doses
34 radiation treatments including booster doses
receiving herceptin every 3 weeks since late August 2006 for 12 months
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01-19-2007, 09:22 AM
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#18
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Senior Member
Join Date: Jul 2005
Location: Ft. Collins, Colorado
Posts: 546
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happy belated
I hope you have found some peace in the last day or so and if not, I hope it will come your way soon. Happy, happy birthday-despite this dumb disease!!!
__________________
with love and gratitude,
joy
dx stage I 2/2000*er/pr+; her- per IHC*lumpectomy*4 rounds A/C*30 rads*tamoxifen*dx stage 4 5/2002*huge mets to liver*tiny mets to lungs*stopped tamoxifen*5/02 taxotere/xeloda*her 2 checked with FiSH-her2+++herceptin *2/03 stopped chemo femara w/herceptin*zolodex*04 switched to aromasin w/herceptin*05 high estrogen tx*11/05taxol/carbo*7/06 stopped chemo; megace/herceptin*9/06navelbine/herceptin*5/07tykerb/xeloda great response*4/08 progression in liver; ooph/ faslodex /herceptin
6/08 began Herceptin DM-1
9/08 progression
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