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Old 03-15-2018, 11:00 AM   #25
KatherineM
Senior Member
 
Join Date: May 2014
Posts: 94
Re: Cyberknife or Whole Brain?

So I broke the cyberknife. Had to reboot the computer with 15 minutes to go. Lovely. Took an ativan and came home to nap for a few hours. Feeling sleepy, but normal enough. Yesterday, I had some unsteadiness and shaking, and was worried, but it seems to have been nerves - I was very anxious and scared - and maybe not some accelerated worsening. Will get Halven and add Tykerb back tomorrow, my 59th birthday. Then another brain MRI in April to see what the little lesions are doing. Felt so surreal to get the cyberknife today - lying down with the mask on, as the robot wheeled around the room, squealing, beeping, and bopping, knowing that it was periodically zapping my brain with high doses of radiation. Unpleasant, but minimally invasive. No pain. No blood. No knife. Just the powerful invisible force of a substance used in military weaponry, for great destruction, or, in this case, for individual healing. Strangeness. But gratitude. I hope it works! Thanks, you guys, your support means more and more to me, as we share this journey. People say I'm brave, and maybe I am, but I wouldn't be if I hadn't had to have been. Will I make it to 60? Big deal in Korean culture. I hope so!
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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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