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Old 10-02-2006, 07:17 PM   #1
Vanessa
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Criteria for NED

How do you know if you have reached the NED status?
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Old 10-02-2006, 08:50 PM   #2
Cathya
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Vanesa;

I wish I knew. I think I'm NED but my onc never discusses this with me.

Cathy
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Diagnosed Oct. 2004 3 cm ductal, lumpectomy Nov. 2004
Diagnosed Jan. 2005 tumor in supraclavicular node
Stage 3c, Grade 3, ER/PR+, Her2++
4 AC, 4 Taxol, Radiation, Arimidex, Actonel
Herceptin for 9 months until Muga dropped and heart enlarged
Restarting herceptin weekly after 4 months off
Stopped herceptin after four weekly treatments....score dropped to 41
Finished 6 years Arimidex
May 2015 diagnosed with ovarian cancer
Stage 1C
started 6 treatments of carboplatin/taxol
Genetic testing show BRCA1 VUS
Nice! My hair came back really curly. Hope it lasts lol. Well it didn't but I liked it so I'm now a perm lady
29 March 2018 Lung biopsy following chest CT showing tumours in pleura of left lung, waiting for results to the question bc or ovarian
April 20, 2018 BC mets confirmed, ER/PR+ now Her2-
Questions about the possibility of ovarian spread and mets to bones so will be tested and monitored for these.
To begin new drug Palbociclib (Ibrance) along with Letrozole May, 2018.
Genetic testing of ovarian tumour and this new lung met will take months.
To see geneticist to be retested for BRCA this week....still BRCA VUS
CA125 has declined from 359 to 12 as of Aug.23/18


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Old 10-02-2006, 09:07 PM   #3
Sherryg683
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You reach NED when there is no active cancer that shows up in your body. Usually this is determined by doing a PET/CT. I started chemo (taxotere, Xeloda, Herceptin) in January and I was told that I was NED in April after my PET/CT came back clean..(I had two small lung mets). Since April I have had 1 CT scan, and just had another CT/PET in September and they have all come back clean. I also have had 2 brain MRI's since then, because I have headaches from Herceptin and I get freaked out and make my Oncologist order me MRI's..lol....they have also come back clean. Some doctors don't routinely do these scans. Mine scans me every 3 months, I guess because I was stage IV and he wants to keep an eye on me. ..sherryg
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Old 10-03-2006, 05:25 PM   #4
MCS
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Good question.


Yes PT/CT and also continuous markers at a certain level.

XOXO

MCS ( maria)
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Old 10-03-2006, 10:09 PM   #5
tousled1
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Sherryg,

My oncologist also sends me every 3 months for a PET/CT scan and also MRI when I started Herceptin and had very bad headaches. I just had a PET/CT in August that was clear and an MRI which was clear. I have another PET/CT scan scheduled for mid October since I'm having some pain in my lower right rib cage area and she wants to make sure it's nothing to worry about. I also got my first Bayer Serum test done and she will repeat that every 6 weeks.
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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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