HER2 Support Group Forums - View Single Post - Has anyone ever been told that they would not go NED by their Onc but did anyway?

VaMoonRise · 01-02-2007, 04:07 AM

I have liver mets that are responding fairly well to treatment of Taxol, Herceptin and Tykerb (Lapatinib). The tumors are pretty extensive throughout my liver into both lobes. So far they have been slightly shrinking on and off between CT scans or remaining stable but none have gone away so far. My oncologist says that the chances of me going NED are next to nil. Needless to say I was very bummed out about this as I truly had high hopes of going NED especially with being on these advanced drugs since the beginning of the Lapatinib clinical trials. I have been on this same and only treatment plan since Dec. 23, 2005 with no further progression.

Has anyone ever been told by their Onc that they would not go NED and did anyway? I so much want to hold out hope of becoming NED one day but not if it is a false hope. I would rather come to accept that I will always have active disease than to keep hoping for something that will never come. I guess what I need right now is either some encouragement or a reality check so I can get myself out of this emotional limbo that I feel like I am in. I also wish I had some idea of a prognosis. I know that no one has the answer to this as it varies from one individual to another and with all of the new drugs on the market doctors no longer like to give out a prognosis but I would be happy with just a ballpark figure.

I would really appreciate any input anyone has. Thanks so much ladies.

Love & Hugs,
Nicola

01-02-2007, 04:07 AM	#1
VaMoonRise Deceased Join Date: Mar 2006 Location: Virginia Posts: 113	Has anyone ever been told that they would not go NED by their Onc but did anyway? I have liver mets that are responding fairly well to treatment of Taxol, Herceptin and Tykerb (Lapatinib). The tumors are pretty extensive throughout my liver into both lobes. So far they have been slightly shrinking on and off between CT scans or remaining stable but none have gone away so far. My oncologist says that the chances of me going NED are next to nil. Needless to say I was very bummed out about this as I truly had high hopes of going NED especially with being on these advanced drugs since the beginning of the Lapatinib clinical trials. I have been on this same and only treatment plan since Dec. 23, 2005 with no further progression. Has anyone ever been told by their Onc that they would not go NED and did anyway? I so much want to hold out hope of becoming NED one day but not if it is a false hope. I would rather come to accept that I will always have active disease than to keep hoping for something that will never come. I guess what I need right now is either some encouragement or a reality check so I can get myself out of this emotional limbo that I feel like I am in. I also wish I had some idea of a prognosis. I know that no one has the answer to this as it varies from one individual to another and with all of the new drugs on the market doctors no longer like to give out a prognosis but I would be happy with just a ballpark figure. I would really appreciate any input anyone has. Thanks so much ladies. Love & Hugs, Nicola