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WayTooYoung · 02-05-2012, 07:41 PM

Wow, thank you for sharing your TDM1 experiences with me. I feel a huge weight has been lifted off my shoulders...I do feel a wee bit edgy still...but not nearly as much as before.

Currently, I have 2 confirmed mets but they are local. One is in my chest wall (1cm), one is in my musculature (1cm), and the third area is in my mammory lymph node next to my Aorta. The biopsy for the lymph node came back inconclusive so DRs decided to eer on the positive side. Since its so close to the aorta, no Dr wants to biopsy the site again. Believe it or not, that 3rd site is what made me eligible for this TDM1 trial but only by default. Drs initially believed that my mets were surgically removable, thus making me curable...but now it's questionable because of the third spot. I am hoping that TDM1 will shrink things enough to make it surgically removable...would be even better if I can achieve NED.

I wonder, is it possible to remain NED forever? If so, how long do you need to be NED before they wean you off treatments?

02-05-2012, 07:41 PM	#8
WayTooYoung Senior Member Join Date: Jan 2012 Location: Toronto Posts: 64	Re: Any Sistas on TDM1??? Wow, thank you for sharing your TDM1 experiences with me. I feel a huge weight has been lifted off my shoulders...I do feel a wee bit edgy still...but not nearly as much as before. Currently, I have 2 confirmed mets but they are local. One is in my chest wall (1cm), one is in my musculature (1cm), and the third area is in my mammory lymph node next to my Aorta. The biopsy for the lymph node came back inconclusive so DRs decided to eer on the positive side. Since its so close to the aorta, no Dr wants to biopsy the site again. Believe it or not, that 3rd site is what made me eligible for this TDM1 trial but only by default. Drs initially believed that my mets were surgically removable, thus making me curable...but now it's questionable because of the third spot. I am hoping that TDM1 will shrink things enough to make it surgically removable...would be even better if I can achieve NED. I wonder, is it possible to remain NED forever? If so, how long do you need to be NED before they wean you off treatments? __________________ Feb/2010-Diagnosed with IDC ER+, PR+, Her2+++(age 28) Mar 2010- 6 Rounds of FECT (made me sick as a dog) Jun 2010- Finished chemo Jul 2010- Mastectomy +12 lymphs (4+) Oct 2010- Radiation/Begin Herceptin (Her2 was overlooked by my Onco!) Sep 2011- End of Herceptin Nov 2011- Recurrence-->Chest Wall, muscle, and possible lymph (ER+, PR-, Her2+++)...WTF!!!???!!! Feb 2012-Randomized for Clinical Trial Feb 2012- Begin blind study either TDM1 w/Pertuzumab or TDM1 w/Placebo Pertuzumab Jan 2013-2nd Recurrence, off TDM1...what next? Feb 2013-chest wall resection Feb 2013-Begin Zoladex :( Apr 2013-Begin Femara Jul 2013-Oopherectomy + both tubes Oct 2013-Chest wall recurrence same spot...Dr monitor Nov 2013-New nodule on chest...restaging...bone/ct clear...continue to monitor Mar 2014-Surgeon fr/dif hospital confirms lung metasis based on review of CT scan from Nov...Onc recommends Aromasin/Affinitor... Apr 2014-Start Herceptin+Vinorelbine Sep 2014-New pain in lower back, MRI confirms metastasis Oct 2014-SBRT to lungs Nov 2014-SBRT to lower back Dec 2014-Restaging confirms two new nodules to lungs and lower spine :( Jan 2015-Xeloda and Tykerb (good response) Aug 2015-Xeloda/Tykerb not working...Dr wants to try Taxol/Herceptin combo...problem, Herceptin not covered by OHIP Sep 2015-Begin Taxol continue Xgeva Oct 2015-Add Herceptin Nov 2015-CT stable but MRI shows new mets to spine :( Jan/Feb 2016-Start Erubulin (Halavan) May 2016-Progression...Stop Erubulin June 2016-PMH to explore Clinical Trial options...consideration for Immunotherapy July 2016-Screening for Trial...Still without treatment, experiencing low appetite, low energy, pain, and rapid wieght loss...cachexia??? You never know how STRONG* you really are...until being strong is the only CHOICE you have...*