HER2 Support Group Forums - View Single Post - Help for someone on the newcomers forum please.

Lori R · 11-01-2008, 07:44 AM

I am not far enough out to provide first hand experience in regards to transitioning off of Herceptin. I did want to pass along my Onc's perspective.

I was diagnosed a year ago. Completed Chemo in March of this year 2008. My year of herceptin (I received herceptin at the same time as my Chemo) would have finished this week.

I am fortunate to be in remission. I like the term that members of the board use NED (no evidence of disease). It sort of acknowledges that searching for evidence remains an unfortunate but real part of our new life experience.

My Onc plans to keep me on herceptin indefinately. I am thankful for that perspective and plan to receive a herceptin infusion once every 3 weeks for a long long time. It is such a strange feeling to not fully know what party is going on inside of your body. "Something" is working for now and I'll ride this winning horse as far as I can.

Side effects for me have been minimal. The biggest one that I am currently blaming on herceptin is that my hair hasn't really returned. I might be blaming the wrong chemical. My lack of hair could be the result of the taxotere.

Hope this provides a little insight

11-01-2008, 07:44 AM	#3
Lori R Senior Member Join Date: Jan 2008 Location: Evergreen, Colorado Posts: 454	I am not far enough out to provide first hand experience in regards to transitioning off of Herceptin. I did want to pass along my Onc's perspective. I was diagnosed a year ago. Completed Chemo in March of this year 2008. My year of herceptin (I received herceptin at the same time as my Chemo) would have finished this week. I am fortunate to be in remission. I like the term that members of the board use NED (no evidence of disease). It sort of acknowledges that searching for evidence remains an unfortunate but real part of our new life experience. My Onc plans to keep me on herceptin indefinately. I am thankful for that perspective and plan to receive a herceptin infusion once every 3 weeks for a long long time. It is such a strange feeling to not fully know what party is going on inside of your body. "Something" is working for now and I'll ride this winning horse as far as I can. Side effects for me have been minimal. The biggest one that I am currently blaming on herceptin is that my hair hasn't really returned. I might be blaming the wrong chemical. My lack of hair could be the result of the taxotere. Hope this provides a little insight __________________ 2007 Oct - Diagnosed - Stage IV 5 c.m. IDC - Left Side er/pr- Her2+++ Node + 2/14 - Single Liver Met Double Mastectomy Nov - Begin T+H 2008 Feb-Complete 6 cycles- T&H- NED March - Continue - Herceptin Only April - Rads for 6 weeks 2009 Continue Herceptin - Continue NED April - Recurrance- 3 cm. Liver Met May - Cryosurgery June - November - Abraxane + Herceptin Aug - PET/CT - CTC = 0 Back to NED 2010 January - Continue NED July - Recurrance - 3 cm Liver Met CTC=1 August - Cryosurgery #2 August - November Navelbine November - Back to NED - End Navelbine 2011 Feb - Recur - 4 cm Liver Met - Same Left Lobe March Surgery it is -Couldn't get a clean margin July - Confirmed continued liver involvement August - Begin Herceptin + Tykerb October - Mixed results from H+T Add Abraxane + H + T - Nov - April 2012 January PET Scan - It's working!! April - Back to NED July - Recurrance August - Begin TDM-1 Trial (Taxol + TDM-1)