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So, I decided to get cyberknife to the largest (16 mm) lesion, on Thursday, March 15, the day before my 59th birthday. They are putting me back on Tykerb, and Haloven, for blood brain barrier, to keep small lesions at bay. I will get monitored next month to see how that's going. I feel better about getting minimally invasive treatment first. No symptoms, apart from numb left pinky, which they think is caused by the large lesion. Does anyone know of immunotherapy, or other clinical trials on HER2+ women with brain mets?

Wish me luck! It all feels so surreal, doesn't it? So hard to process.

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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

03-10-2018, 08:41 AM	#14
KatherineM Senior Member Join Date: May 2014 Posts: 94	Re: Cyberknife or Whole Brain? So, I decided to get cyberknife to the largest (16 mm) lesion, on Thursday, March 15, the day before my 59th birthday. They are putting me back on Tykerb, and Haloven, for blood brain barrier, to keep small lesions at bay. I will get monitored next month to see how that's going. I feel better about getting minimally invasive treatment first. No symptoms, apart from numb left pinky, which they think is caused by the large lesion. Does anyone know of immunotherapy, or other clinical trials on HER2+ women with brain mets? Wish me luck! It all feels so surreal, doesn't it? So hard to process. __________________ _______________________ 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