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10-15-2007, 09:07 AM
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#1
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Senior Member
Join Date: Oct 2005
Posts: 3,519
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I know that some/many docs don't believe in them... I am glad that my doc does. He doesn't rely soley on them, but they are an integral piece to the puzzle in my journey - and like I said, they have always been the earliest indication of my recurrances. Especially before I was metastatic, and being Her2+, he felt that it was important to have as much screening info as we could in case I developed mets (we wanted to know as early as possible)... and my rising tumor marker was our first red flag to look at things when we found my first mets, and ever since then, mine have corellated directly to recurrance. Mind you, my doc always reminds me that the TMs might not always rise even if I have new activity, or that them rising may not always mean new activity, that we can't count on them being absolute every time, but they are a big part of our puzzle.
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Brenda
NOV 2012 - 9 yr anniversary
JULY 2012 - 7 yr anniversary stage IV (of 50...)
Nov'03~ dX stage 2B
Dec'03~ Rt side mastectomy, Her2+, ER/PR+, 10 nodes out, one node positive
Jan'04~ Taxotere/Adria/Cytoxan x 6, NED, no Rads, Tamox. 1 year, Arimadex 3 mo., NED 14 mo.
Sept'05~ micro mets lungs/chest nodes/underarm node, Switched to Aromasin, T/C/H x 7, NED 6 months - Herceptin only
Aug'06~ micro mets chest nodes, & bone spot @ C3 neck, Added Taxol to Herceptin
Feb'07~ Genetic testing, BRCA 1&2 neg
Apr'07~ MRI - two 9mm brain mets & 5 punctates, new left chest met, & small increase of bone spot C3 neck, Stopped Aromasin
May'07~ Started Tykerb/Xeloda, no WBR for now
June'07~ MRI - stable brain mets, no new mets, 9mm spots less enhanced, CA15.3 down 45.5 to 9.3 in 10 wks, Ty/Xel working magic!
Aug'07~ MRI - brain mets shrunk half, NO NEW BRAIN METS!!, TMs stable @ 9.2
Oct'07~ PET/CT & MRI show NED
Apr'08~ scans still show NED in the head, small bone spot on right iliac crest (rear pelvic bone)
Sept'08~ MRI shows activity in brain mets, completed 5 fractions/5 consecutive days of IMRT to zap the pesky buggers
Oct'08~ dropped Xeloda, switched to tri-weekly Herceptin in combo with Tykerb, extend to tri-monthly Zometa infusion
Dec'08~ Brain MRI- 4 spots reduced to punctate size, large spot shrunk by 3mm, CT of torso clear/pelvis spot stable
June'09~ new 3-4mm left cerrebellar spot zapped with IMRT targeted rads
Sept'09~ new 6mm & 1 cm spots in pituitary/optic chiasm area. Rx= 25 days of 3D conformal fractionated targeted IMRT to the tumors.
Oct'09~ 25 days of low dose 3D conformal fractionated targeted IMRT to the bone mets spot on rt. iliac crest that have been watching for 2 years. Added daily Aromasin back into treatment regimen.
Apr'10~ Brain MRI clear! But, see new small spot on adrenal gland. Change from Aromasin back to Tamoxifen.
June'10~ Tumor markers (CA15.3) dropped from 37 to 23 after one month on Tamoxifen. Continue to monitor adrenal gland spot. Remain on Tykerb/Herceptin/Tamoxifen.
Nov'10~ Radiate positive mediastinal node that was pressing on recurrent laryngeal nerve, causing paralyzed larynx and a funny voice.
Jan'11~ MRI shows possible activity or perhaps just scar tissue/necrotic increase on 3 previously treated brain spots and a pituitary spot. 5 days of IMRT on 4 spots.
Feb'11~ Enrolled in T-DM1 EAP in Denver, first treatment March 25, 2011.
Mar'11~ Finally started T-DM1 EAP in Denver at Rocky Mountain Cancer Center/Rose on Mar. 25... hallelujah.
"I would rather be anecdotally alive than statistically dead."
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10-15-2007, 11:34 AM
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#2
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Member
Join Date: Sep 2007
Posts: 10
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I am getting my first TMs drawn next week. What kind of numbers should I be looking for? What is considered low, moderate, or high?
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jennifer
dx 6/06
Double mas 8/06
Stage IIa
ER+/PR-, HER2+
Taxotere completed 12/06
Tamoxifen
Herceptin
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10-15-2007, 12:06 PM
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#3
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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The old "are markers reliable" question
Hi Beans -
The CA 125 is to detect Ovarian cancer. I have had this drawn with no opposition from my med onc. Once we have ONE cancer, we are at HIGHER risk for a second cancer to come along. Reproductive cancers are high on that list. So, I consider that I at least have a base line for the 125 with two tests reading at the same level.
One thing I am not sure of is whether Ovarian is normally more hormone driven.
As for the BC markers and CEA, they have always been good indicators for me. Before we really knew that to be the case, my med onc explained he wanted to keep checking them as the favorite places for BC mets were more sensitive to the markers (as stated in the research cited by Marcia) and with my more aggressive disease profile he wanted to keep me close on his radar screen.
The CEA marker was sensitive to my brain mets and CA27-29 rose and fell with my extensive liver mets.
In short, if the onc is aware of how best to use the markers and what they are best at indicating, they might not be so mistrustful. We also have the HER2 serum test, which may not be approved for early stagers, but many of us have put it to good use since its release.
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"When I hear music, I fear no danger. I am invulnerable. I see no foe. I am related to the earliest times, and to the latest." H.D. Thoreau
Live in the moment.
MY STORY SO FAR ~~~~
Found suspicious lump 9/2000
Lumpectomy, then node dissection and port placement
Stage IIB, 8 pos nodes of 18, Grade 3, ER & PR -
Adriamycin 12 weekly, taxotere 4 rounds
36 rads - very little burning
3 mos after rads liver full of tumors, Stage IV Jan 2002, one spot on sternum
Weekly Taxol, Navelbine, Herceptin for 27 rounds to NED!
2003 & 2004 no active disease - 3 weekly Herceptin + Zometa
Jan 2005 two mets to brain - Gamma Knife on Jan 18
All clear until treated cerebellum spot showing activity on Jan 2006 brain MRI & brain PET
Brain surgery on Feb 9, 2006 - no cancer, 100% radiation necrosis - tumor was still dying
Continue as NED while on Herceptin & quarterly Zometa
Fall-2006 - off Zometa - watching one small brain spot (scar?)
2007 - spot/scar in brain stable - finished anticoagulation therapy for clot along my port-a-catheter - 3 angioplasties to unblock vena cava
2008 - Brain and body still NED! Port removed and scans in Dec.
Dec 2008 - stop Herceptin - Vaccine Trial at U of W begun in Oct. of 2011
STILL NED everywhere in Feb 2014 - on wing & prayer
7/14 - Started twice yearly Zometa for my bones
Jan. 2015 checkup still shows NED
2015 Neuropathy in feet - otherwise all OK - still NED.
Same news for 2016 and all of 2017.
Nov of 2017 - had small skin cancer removed from my face. Will have Zometa end of Jan. 2018.
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10-15-2007, 12:33 PM
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#4
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Senior Member
Join Date: Feb 2006
Location: Acworth, GA
Posts: 2,104
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My oncologist ran tumor marker tests and my HER2 serum every 12 weeks. My TMs never changed - right now it is 15.1 and it was 15.3 when I was initially diagnosed. Therefore it is not a god indicator for me. We have found that the HER2 serum test is much more reliable in my case. It was the first sign that I had developed mets. some oncologists do not run TMs.
__________________
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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