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Re: Checking In: Bad News (Hello Kadcyla) and Good New!
Glad that Kadcyla is working for you, Kim! I started on it in March - for lung mets - and will get scanned in May to see if it's working. H&P and Taxol stopped working after a year.
Because I'm Asian, I have twice experienced low platelet counts, (45% of Asian women, 15% of general population, get them), that required platelet transfusions. The second time, I had an allergic reaction and broke out into hives!
The other side effects are neuropathy, severe hand and foot cramps, and blurred vision. My right eye has swollen; I go see an ophthalmologist on Monday.
But it will all be worth it, if Kadcyla is working! So glad that you could ride and camp. I'm planning to go to Italy in May, with my daughter, for her 30th birthday!
To continuing to live our wonderful lives! I am inspired by you long-timers. I am two years from initial diagnosis; one year from Stage IV diagnosis, and would like to stick around for my yet-to-be-born grandchildren!
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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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