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07-10-2012, 09:39 PM
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#1
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Senior Member
Join Date: Apr 2007
Location: LA LA Land
Posts: 1,607
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Is the markers test standardized?
I have a quick markers question...I had my markers drawn on 6/22 in LA. CEA had jumped quite a bit (quadrupled). Had them drawn two weeks later, in NYC, and the CEA came back down.
Is the markers test standardized or do the results vary from lab to lab? Thanks for any input!
__________________
1996 cancer WTF?! 1.3 cm lumpectomy Er/Pr neg. Her2+ (20nodes NEGATIVE) did CMF + rads. NED.
2002 recurrence. Bilateral mastectomy w/TFL autologous recon. Then ACx2. Skin lymphatic rash. Taxotere w/Herceptin x4. Herceptin/Xeloda. Finally stops spreading.
2003 - Back to surgery, remove skin mets, and will have surgery one week later when pathology can confirm margins.
‘03 latisimus dorsi flap to remove skin mets. CLEAN MARGINS. Continue single agent Herceptin thru 4/04. NED.
‘04 '05 & 06 tiny recurrences - scar line. surgery to cut out. NED each time.
1/2006 Rads again, to scar line. NED.
3/07 Heartbreaking news - mets! lungs.sternum. Try Tykerb/Xeloda. Tykerb/Carbo/Gemzar. Switch Oncs.
12/07 Herceptin.Tykerb. Markers go stable.
2/8/08 gamma knife 13mm stupid brain met.
3/08 Herceptin/tykerb/avastin/zometa.
3/09 brain NED. Lungs STABLE.
4/09 attack sternum (10 daysPHOTONS.5 days ELECTRONS)
9/09 MARKERS normal!
3/10 PET/CT=manubrium intensely metabolically active but stable. NEDhead.
Wash out 5/10 for tdm1 but 6/10 CT STABLE, PET improving. Markers normal. Brain NED. Resume just Herceptin plus ZOMETA
Dec 2010 Brain NED, lungs/sternum stable. markers normal.
MAR 2011 stop Herceptin/allergy! Go back on Tykerb and switch to Xgeva.
May-Aug 2011 Tykerb Herceptin Xgeva.
Sept 2011 Tykerb, Herceptin, Zometa, Avastin.
April 2012 sketchy drug trial in NYC. 6 weeks later I’m NED!
OCT 2012 PET/CT shows a bunch of freakin’ progression. Back to LA and Herceptin.avastin.zometa.
12/20/12 add in PERJETA!
March 2013 – 5 YEARS POST continue HAPZ
APRIL 2013 - 6 yrs stage 4. "FAILED" PETscan on 4/2/13
May 2013: rePetted - improvement in lungs, left adrenal stable, right 6th rib inactive, (must be PERJETA avastin) sternum and L1 fruckin'worsen. Drop zometa. ADD Xgeva. Doc says get rads consultant for L1 and possible biopsy of L1. I say, no thanks, doc. Lets see what xgeva brings to the table first. It's summer.
June-August 2013HAPX Herceptin Avastin Perjeta xgeva.
Sept - now - on chemo hold for calming tummy we hope. Markers stable for 2 months.
Nov 2013 - Herceptin-Perjeta-Avastin-Xgeva (collageneous colitis, which explains tummy probs, added Entocort)
December '13 BRAIN MRI ned in da head.
Jan 2014: CONTINUING on HAPX…
FEB 2014 PetCT clinical “impression”: 1. newbie nodule - SUV 1.5 right apical nodule, mildly hypermetabolic “suggestive” of worsening neoplastic lesion. 2. moderate worsening of the sternum – SUV 5.6 from 3.8
3. increasing sclerosis & decreasing activity of L1 met “suggests” mild healing. (SUV 9.4 v 12.1 in May ‘13)
4. scattered lung nodules, up to 5mm in size = stable, no increased activity
5. other small scattered sclerotic lesions, one in right iliac and one in thoracic vertebral body similar in appearance to L1 without PET activity and not clearly pathologic
APRIL 2014 - 6 YRS POST GAMMA ZAP, 7 YRS MBC & 18 YEARS FROM ORIGINAL DX!
October 2014: hold avastin, continue HPX
Feb 2015 Cancer you lost. NEDHEAD 7 years post gamma zap miracle, 8 years ST4, +19 yrs original diagnosis.
Continue HPX. Adding back Avastin
Nov 2015 pet/ct is mixed result. L1 SUV is worse. Continue Herceptin/avastin/xgeva. Might revisit Perjeta for L1. Meantime going for rads consult for L1
December 2015 - brain stable. Continue Herceptin, Perjeta, Avastin and xgeva.
Jan 2016: 5 days, 20 grays, Rads to L1 and continue on HAPX. I’m trying to "save" TDM1 for next line. Hope the rads work to quiet L1. Sciatic pain extraordinaire :((
Markers drop post rads.
2/24/16 HAP plus X - markers are down
SCIATIC PAIN DEAL BREAKER.
3/23/16 Laminectomy w/coflex implant L4/5. NO MORE SCIATIC PAIN!!! Healing.
APRIL 2016 - 9 YRS MBC
July 2016 - continue HAP plus Xgeva.
DEC 2016 - PETCT: mets to sternum, lungs, L1 still about the same in size and PET activity. Markers not bad. Not making changes if I don't need to. Herceptin/Perjeta/Avastin/Xgeva
APRIL 2017 10 YEARS MBC
December 2017 - Progression - gonna switch it up
FEB 2018 - Kadcyla 3 cycles ---->progression :(
MAY30th - bronchoscopy, w/foundation1 - her2 enriched
Aug 27, 2018 - start clinical trial ZW25
JAN 2019 - ZW25 seems to be keeping me stable
APRIL 2019 - ONE DOZEN YEARS LIVING METASTATIC
MAY 2019 - progression back on herceptin add xeloda
JUNE 2019 - "6 mos average survival" LMD & CNS new single brain met - one zap during 5 days true beam SBRT to cord met
10/30/19 - stable brain and cord. progression lungs and bones. washing out. applying for ds8201a w nivolumab. hope they take me.
12/27/19 - begin ds8401a w nivolumab. after 2nd cycle nodes melt away. after 3rd cycle chest scan shows Improvement, brain MRI shows improvement, resolved areas & nothing new. switch to plain ENHERTU. after 4th cycle, PETscan shows mostly resolved or improved results. Markers near normal. I'm stunned but grateful.
10/26/20 - June 2021 Tucatinib/xeloda/herceptin - stable ish.
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07-11-2012, 09:37 AM
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#2
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Senior Member
Join Date: Apr 2011
Posts: 403
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Re: Is the markers test standardized?
LA might use different labs than NYC. On the lab result sheet, it ususally tells you what the normal range is. I would compare my TM to the range and see where it stands in percentage.
__________________
1/11 age 36 DX
ER/PR-, Her2 +
TCH*6, Herceptin
BMX with immediate recontruction 5/2011 Lattismus Flap- Dx stage 3c 10/23 nodes
9/11 Radiation
3/12 Local recurrence to skin stage IV
Whole body scan CLEAR
4/12 Tykerb & Xeolda Skin mets slowly regressing
8/12 PET & Brain CT Clear
5/13 Skin mets progressing
6/13 PET scan chestwall recurrence in contralateral anxillary,internal mammary and ipsilateral subpectoral nodes
6/13 kadcyla
10/13 whole body scan -clear NED. previously resolved skin rash gone but 3 new lesions. Biopsy confirmed for skin recurrence
11/13 to 02/14 tykerb & herceptin
02/14 add abraxane/gemzar, 2 weeks on 1 week off at reduced dose
05/14 whole body PET clear/ brain CT clear but skin mets are getting worse, ready for new chemo
05/14 navelbine perjeta herceptin
07/14 skin mets progressing red rash worse
08/14 wide local excision with diep flap to close wound. Final path shows 2 positive margins showing inflammatory carcinoma Going back to surgery in 2 weeks
09/01/14 resection- clear margins
3 weeks after 2nd surgery, a new nodular rash found near drain incision with 2 small red spots behind the chest wall biopsy on 10/1. Positive for breast cancer
Radiation 11/2014 with xeloda then weekly cisplatin
11/14 brain MRI clean
12/14 finished 33 radiations burnt and very painful. Bedridden for 1 week
12/14 t current Herceptin and perjeta only
02/15 rash on upper back right side skin mets radiation planned
02/15 staring electron radiation *35
Stopped at 30 due to severe skin burn, resumed 10 days later
05/15 red patches appeared in between previously radiated area, skin mets. Ct and brain Mri clear. Simulation planned, radiation to start after trip to Alaska.
05/24 new spot identified in scar line on previously radiated reconstructed breast- electron on both side chest wall area and scar line
07/15 multiple skin and lung recurrence begin halaven
11/15 cough much better but very tired on halaven and starting to see some new red skin blotches-suspicious
11/15 heading to China for immune therapy
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07-11-2012, 09:38 AM
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#3
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Senior Member
Join Date: Sep 2011
Location: Mt. Prospect, IL
Posts: 177
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Re: Is the markers test standardized?
Also, I was informed that "any" inflamation could cause them to rise, that they are very sensitive.
__________________
10/01/10 - Dx at age 44. Found lump after miscarrying & was told it was "probably a clogged milk duct" not so much:
stage II - invasive ductal carcinoma ER/PR+ HER2+
10/01/10 - BRCA test - Negative
11/3/10 -2.5cm tumor removed via lumpectomy, clear margins. sentinal node biopsy - nodes clear!
12/2/10 - port placement
12/2/10 to 3/17/11 - 6 rounds of taxotere, carboplatin & herceptin every 3rd week.
04/20/11 - 6/6/11 - 33 rounds of radiation
4/6/11 to 11/2/11 - 11 additional rounds of herceptin every 3rd week
7/15/11 - port removal
7/5/11 started my 5 year journey on Tamoxifen
9/4/11 -1 yr Chest MRI - CLEAN!!!!
9/5/12 -2 yr Chest MRI - CLEAN!!!!
8/29/12 - Started spotting after being in chemopause 1.5 years. Ultra sound detected 6cm ovary mass & very thick lining. YIKES! Taken off Tamoxifen
9/6/12 - Full abdominal hysterectomy. Pathology report came back clean... thank you baby Jesus!!
9/28/12 - Started Anastrozole
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07-11-2012, 07:04 PM
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#4
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Senior Member
Join Date: Aug 2010
Location: New York, New York
Posts: 1,580
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Re: Is the markers test standardized?
I have learned from a very knowing newcomer on this list that an uptick in CEA could mean a different lot was used for testing.
Karen
__________________
World Trade Center Survivor (56th Floor/North Tower): 14 years and still just like yesterday.
Graves Disease, became Euthyroid via Radioactive Iodine, June 2001.
Thyroid Eye Disease. 2003. Decompression surgery in 2009; eyelid lowering surgery in 2010.
Diagnosed: June 2010, liver mets. ER-/PR+10%; HER2+++.
July 2010: Begin Taxol/Herceptin. Eliminate sugar from diet. No surgery or radiation.
January 2011: NED
April 2011: Progression in liver only. Other previous affected areas eradicated. Stop Taxol/Herceptin after 32 infusions.
May 2011: Brain MRI: clear.
May 2011: Begin Tykerb daily, Xeloda twice per day for one week on, one week off, and Herceptin.
November 2011: Progression in liver. All other tumors remain eradicated.
December 2011: BEGIN TRIAL #09-093 Taxol, MCC-DM1 (T-DM1), Perjeta.
Trial requires scans every six weeks, bloodwork and infusions weekly.
Brain MRI: clear.
January 2012: NED. Liver mets, good riddance!
March 2012: NED. Developed SMA (rare blood clot) in intestinal artery and loss of sight in right eye due to optical nerve neuropathy. Resolved when Taxol removed this month.
Continue Protocol of T-DM1 weekly and Perjeta every 3 weeks.
May 2012: NED.
June 2012: Brain MRI: clear.
June-December 2012: NED.
December 2012: TRIAL CONCLUDED; ENTER TRIAL EXTENSION #09-037. CT, Brain MRI, bone scan: clear. NED.
January-March 2013: NED.
June 2013: Brain MRI: clear. CEA upticking; CT shows new met on liver.
July 3, 2013: DISASTER STRIKES during liver ablation: sloppy surgeon cuts intercostal artery and I bleed out, lose 3.5 liters of blood, have major hemothorax, and collapsed lung requiring emergency resuscitative thoracotomy, lung surgery, rib rearrangement and cutting deep connective tissue, transfusion. Ablation incomplete. This life-saving procedure would end up causing me unforgiving pain with every movement I make, permanently, otherwise known as forever.
July 26, 2013: Try Navelbine/Herceptin. Body too weak after surgery and transfusion. Fever. CEA: Normal.
August 16, 2016: second dose Navelbine/Herceptin; CEA: Normal. Will skip doses. Watching and waiting.
September 2013: NED, Herceptin only. CEA: Normal. Started Arimidex.
October-November 2013: NED. Herceptin and Arimidex. CEA, CA125, 15-3: Normal.
December 2013: Something brewing. PET lights up on little spot on liver; CEA upward trend, just outside normal. PET and triphasic liver scan confirm Little Met. Restart Perjeta with Herceptin, stay on Arimidex. Genomic sequencing completed for future treatments, if necessary.
January 2014: Ablate Little Met on the 6th. Happy New Year.
March 2014: Brain MRI: clear. PET/CT reveal liver mets return; new lung mets. This is not funny.
March 2014: BEGIN TRIAL #10-005 A(11)-Temsirolimus plus Neratinib.
April 2014: Genomic testing indicated they could work, they did not. Very strange drug combo for me, felt weird.
April 2014: Started Navelbine and Herceptin. Needed something tried and true, but had significant progression.
June 2014: Doxil and Herceptin.
July 2014: Progression. Got nothing out of it. Brain: NED.
July 2014: Add integrative medical hematologist-oncologist to my team. Begin supplements. These are tumor-busting, immune system boosters. Add glutathione, lysine and taurine IV infusions every three weeks.
July 2014: Begin Gemzar, Herceptin & Perjeta. Happy.
August 2014: ECHO perfect.
January 2015: Begin weekly Vitamin D Analog infusions. 25 mcg. via port.
February 2015: CT: stable.
April 2015: Gem working, but not 100%. Looking into immunotherapy. Finally, treatments for the 21st century!
April 2015: Penn Medicine. Dendritic cell immunotherapy.
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07-31-2012, 11:20 AM
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#5
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Senior Member
Join Date: Jan 2012
Location: Boulder Colorado as of January 2013
Posts: 389
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Re: Is the markers test standardized?
Being around smokers can kick it up. The test is not that expensive. Have them run a few in the same lab over three weeks. Long time ago I helped bring the test for one company to market and we saw differences from lot to lot. You need to be aware of increasing levels over a period of weeks or months. Temperature gauge on the car, not a warning light.
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