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Re: Cyberknife or Whole Brain?
I am four days out from cyberknife, and, though I am not experiencing any side effects so far - knock on wood - I have been sort of freaking out about the grim statistics surrounding brain metastases, which I couldn't help stumbling upon. Even though I've been stage 4 for three years, I still had hope that the lung mets could be stabilized, and that I had some years left to live a good quality of life, but now with the brain progression, I feel like my time line has shrunk suddenly, to where I'm wondering if I'll make it to my 60th, which is a year from Friday. This is terrifying, but the worst part is the not knowing. I teach university, and am trying to finish out the semester, but may have to take medical leave in the fall, and don't know if I'll ever go back. I'm not sure what to do about the fear and the uncertainty, which I'm sure you all share; it's one of the pervasive conditions of our illness and staging, but how do you handle it healthily? How do you not succumb to the fear and the dark thoughts? It's so hard, and you don't want to bring the people you love down, or to be treated with kid gloves, but it's also hard, sometimes, to pretend to be up or cheerful all the time. You know?
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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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