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Hi;
I have been off herceptin for almost 4 months because of, originally, a low muga score. It dropped to 48 for 4 months (2 gated heart scans) and then at 42 I was taken off herceptin. After 2 months my muga was 52 but my heart was enlarged so I continued off herceptin. My last scan (two weeks ago) shows that my heart is back to normal size but my muga score was 48.....scream!!! In any case there is a % error in these scans so my onc is sending my for an echocardiogram and if things are normal he will put me back on herceptin. I am hopeful. It's just one of those things. I was on herceptin for 8 months before I had to stop......as I am NED right now and feel good (no longer so tired...I believe the enlarged heart was the thing that made me tired more than the low muga score) I figure my original 8 months did me good.....lol. This new test apparently gives better, more accurate results so perhaps your doctors could consider it?
Best regards,
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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