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Old 05-11-2018, 11:29 AM   #1
Cathya
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Join Date: Sep 2005
Location: Ontario, Canada
Posts: 752
Re: Cancer 'n Me

Flori;

One of the ladies taking ibrance/letrozole had to stop as her tumours were found to be triple negative. She is currently taking Halaven (eribulin). Hasn't been on it long enough yet for results but I will contact her if needs be to see how she's finding it. She has mets to the bones, skin, etc. She lives in France.

best wishes,

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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Old 05-11-2018, 05:28 PM   #2
KatherineM
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Join Date: May 2014
Posts: 94
Re: Cancer 'n Me

Flori -

I saw your note from my cyberknife thread. Wondering what was going on with you. I am sending positive energy and lots of cyber hugs!

Don't know if you saw my update on the other thread, but the Haloven/Tykerb and cyberknife really knocked back my tumors, both brain and lungs. My radiation oncologist said she'd never seen anything like it! Meanwhile, I just submitted final grades for the semester, and have been approved for Family and Medical Leave for Fall 2018. I am sad not to be teaching next semester, but I want to have some time while I'm feeling relatively well, to get some life projects done -- like finish my book of essays, throw out tons of things, and, something I'm very excited about - making videos of me reading my favorite, and my grown children's favorite books from childhood, for my yet-unborn-grandbabies, whom I refer to as players-to-be-named-later. I got about 50 of our favorites, from picture books, to chapter books. I'm a writer and a professor of literature and writing, and these are the books that made me want to be a writer, and reading to my kids was something I did every night, so I wanted this to be a legacy of mine, to pass this on to the next generation, even if I'm not physically around when they grow up. (My daughter is 32, but not ready yet, and my son is 27, and certainly not ready!)

Anyway, I am going to make the best of the time off, and hope that I'll be able to go back to teaching in the Spring. Who knows? And, Flori, I hope that you'll be dispensing your support and wisdom for years to come. You are an inspiration!

I had Foundation One testing, but BCBS refused to pay, after two appeals, so now we are doing an outside appeal, but I don't expect much. It's about $4000, so just add it to the thousands I owe. Ha. I wish you better luck!

Rooting for you, and for everyone here. Long may we all run!
__________________
_______________________
Diagnosed 3/26/14 BC Stage 3a ER neg PR neg HER-2+
5 cm tumor in left breast, needle node biopsy positive
Started TCHP 4/25/14 - 6 rounds
Oncologist can no longer feel tumor, after 4th round
Chemo shrunk tumor to less than a mm
Lumpectomy and axillary node dissection 9/3/14
Radiation for 5 weeks, with boost
Herceptin until 4/3/15
CT Scan on 4/27 shows lung mets (lots of little ones on both sides, largest 1.6 cm) STAGE IV
Lung biopsy shows still HER2+++/ER-/PR-
Taxol with Herceptin and Perjeta May, June, July 2015
Lung mets reduced by 50%
Just H&P through Fall 2015
11/15 Progression
Back on Taxol with H&P January 2016
THP no longer working March 2016
Start Kadcyla 3/16 After first treatment, experienced low platelets, tongue turned black, had to have transfusion. Dry cough and shortness of breath for first week, improves over second and third.
4/16 Platelet transfusion after second treatment, blood blisters in mouth. Allergic reaction to platelets.
6/16 Kadcyla not working. Progression to liver, though lung mets smaller.
7/16 Start Xeloda and Tykerb.
11/16 Port infected. Taken out. Have to go off chemo.
1/17 Back on Xeloda and Tykerb
5/17 Tykerb and Herceptin
11/17 Navelbine and Herceptin
12/17 Progression in lungs, liver reevaluated, no progression
1/18 Haloven and Herceptin
2/18 Sloan Kettering consultation
3/18 Brain mets, 16 lesions, largest 16mm
3/18 Cyberknife to 16mm lesion
3/18 Haloven and Tykerb added
4/18 Scan shows all lesions significantly smaller! Some almost gone. Radiation oncologist says she's never seen anything like it
7/18 Brain scan shows progression, w/ with one new lesion. Don't want to do WBR. Will try for tucatinib.
8.15.18 Start Keytruda
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