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Scared and Confused
I just went on Haloven for my lung mets, after consulting with a doctor at Sloan Kettering. (I live in NC.) Meanwhile, my pinky finger on my left hand had gone numb, so I had a brain MRI this afternoon. My oncologist called about 30 min. later to say that I have 16 metastases in my brain, most under 10 mm, but one around 16 mm. I'm shocked.
Going to see radiologist tomorrow morning. I think they want me to do Whole Brain Radiation, bc there are so many small tumors. I am terrified, of course. I'm a writer and a professor, and my brain is my go-to organ. Does anyone have any words of wisdom, experience, advice, for me? I am so scared of radiation in my brain, though they put me on steroids, I guess, to avoid swelling, which would be equally terrible?
Amy was the one whose cancer seemed to be a mirror to my own, and now she is gone. She was such a comfort and a presence on this site.
I thought I would have more time, and that just managing the lung mets was enough of a challenge, but now... I am devastated. RIP Amy. Is there anyone out there who has managed brain mets for some time? Please let me know there is hope!
Thank you!
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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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