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lung mets, CT scan, and going off chemo
Hello, there! Been a long time since I posted. Was diagnosed with lung mets in April and been on taxol, Herceptin, and Perjeta until last week. Got scanned and found that mets had shrunk by 30-50%. Good news! Here's my question:
My onc says I can go off taxol, which I am eager to do (I'll stay on H&P indefinitely.) But she said that they don't really know if it's the taxol or the H&P, or the combo, that has reduced the nodes. So, what's the logic? What if it was the taxol, and I progress on H&P? My sense is that she wouldn't put me back on weekly taxol, which has been pretty easy compared to taxotere every three weeks, but would go to kadcyla.
Is it just me, or does Stage 4 treatment feel loosey-goosey? My sense is that there's no set plan, just trial and error options. They scan me every 3 months to see if there's progression, and we take it from there. I'm also nervous about so much radiation from CT scans.
Have any of you been taken off chemo and been on H&P for prolonged lengths of time? I'd be grateful to benefit from hearing of your experiences.
Thanks so much!
Cheers,
Katherine
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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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