Re: Longtime her2 survivor -- no recurrance !
Wow, thanks for posting! You were so very lucky to have caught it before lymph involvement. And amazing that you conquered it with radiation. What a great achievement.
World Trade Center Survivor (56th Floor/North Tower) 12 years and still just like yesterday;
Dxd: June 2010, liver mets. ER-/PR+10%; HER2+++. Euthyroid via RAI, June 2001.
July 2010: Begin Taxol/Herceptin. Eliminate sugar from diet.
January 2011: NED
April 2011: Progression in liver only. Other previous affected areas eradicated. Discontinue Taxol/Herceptin after 32 infusions.
May 2011: Brain MRI: clear.
May 2011: Begin Tykerb daily, Xeloda twice per day for one week on, one week off, and Herceptin.
June-October 2011: CEA in normal range. PET/CT stable; no new lesions.
November 2011: Progression in liver. Previous tumors remain eradicated.
Test Results on 09-093 Trial (scans every six weeks, bloodwork and infusions weekly):
December 2011: Begin trial: 09-093 Taxol, MCC-DM1 (T-DM1), Perjeta. Brain MRI: clear.
January 2012: NED. Liver mets: good riddance!
March 2012: NED. Taxol removed from regimen. Continue Protocol of T-DM1 weekly and Perjeta every 3 weeks.
May 2012: NED.
June 2012: Brain MRI: clear.
June 2012: NED.
August 2012: NED.
September 2012: NED.
October 2012: NED.
November 2012: NED.
December 2012: 09-093 trial concluded; enter trial extension, 09-037. CT, Brain MRI, bone scan: clear. NED.
January 2013: NED.
March 2013: NED.
June 2013: Brain MRI: clear. CEA upticking; CT shows new met on liver.
July 3, 2013: Met ablated, but major sloppy surgical mistake (major hemothorax: causing emergency thoracotomy, lung surgery, collapsed lung, chest tube, rib rearrangement, transfusion after 3.5 liter blood loss); operation incomplete; plan to begin Navelbine/Herceptin later in month.
July 26, 2013: One dose Navelbine/Herceptin; too early after combined surgeries. Fever. CEA: Normal.
August 16, 2016: second dose Navelbine/Herceptin; CEA: Normal. Will skip doses. Watching and waiting.
September 2013: NED, Herceptin only. CEA: Normal. Started Arimidex.
October-November 2013: NED. Herceptin and Arimidex. CEA, CA125, 15-3: Normal.
December 2013: Something brewing. PET lights up on little spot on liver; CEA upward trend, just outside normal. PET and triphasic liver scan confirm Little Met. Restart Perjeta with Herceptin, stay on Arimidex. Genomic sequencing completed for future treatments, if necessary.
January 2014: Ablate Little Met on the 6th. Happy New Year.
March 2014: Brain MRI: clear. PET/CT reveal liver mets return; new lung mets. This is not funny.
March 2014: Begin Protocol #10-005 A(11)-Temsirolimus plus Neratinib.
April 2014: Off the "customized drugs." Genomic testing indicated they could work, they did not. Very strange drug combo for me, felt weird.
April 2014: Started Navelbine and Herceptin. Needed something tried and true, but had significant progression.
June 2014: Doxil and Herceptin. Daughter of The Red Devil, dance! Brain: NED. Progression.
July 2014: Begin Gezmar, Herceptin. Will add Carboplatin if necessary.