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Joy;
Becky just questioned whether your anti-hormone is working. This is a good idea as it doesn't work for everyone I understand. It reminded me that Becky told me previously that your onc could run your estradiol levels to check possibility this out. I will copy her entire comment so you can take it with you to your onc.
"When I went to ASCO I saw a post about a study on Stage 4 women with bone mets only. The researcher used only an antihormonal on these women and measured response. This paper indicated that when estradiol levels went up over 20 (I will see if I have a copy of this paper to include the units of measure), this was an indication that the AI wasn't working.
I asked what she did with these women after that - she commented on Faslodex or Tamoxifen (she indicated tamox is fine for Her2+ women as long as they are also on Herceptin).
So... I come back from ASCO and have my onc run estradiol when they do the cancer marker tests. Result comes back as less than 30. So, I call my onc and ask for the exact number. Well, Quest and Labcorp's lowest reading is less than 30 (which he says is a good number - I am on Arimidex too). So, apparently, these normal labs can't measure lower (I went to a seminar that said in a postmenopausal woman, an AI can take the estradiol level to 1 or 2). So, according to a normal lab, my estradiol level is as low as they can measure it.
Ask your onc about this. Estradiol levels can be measured. Maybe the lab you use has a more sensitive test than the ones we use. Apparently, in a research setting, they can use expensive, sensitive tests."
We'll all keep looking for other ideas. Hang in there.
Cathy
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Cathy
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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