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

Sandy H · 01-02-2007, 11:41 AM

As for myself I have never reached NED however, we really don't know, I am being treated as a chronic ill patient. I am able to be out of treatment and have a good quality of life for 6 years. My prognoses was nearly 0 being IBC. I will reach 6 years in March. I hope this gives you some encouragement that it can be a chronic illness such as others and be kept stable. NED sounds good but some of us don't fit into that catagory but we fit into the "stable" catagory and can live a good quality of life. No one knows how long we have or how the journey will be so we take a day at a time and live it to the fullest. For you that may be hard to do right now but it will come. Sending you a big hug for the New Year. Sandy

01-02-2007, 11:41 AM	#4
Sandy H Senior Member Join Date: Feb 2005 Location: Norridgewock, Maine Posts: 778	As for myself I have never reached NED however, we really don't know, I am being treated as a chronic ill patient. I am able to be out of treatment and have a good quality of life for 6 years. My prognoses was nearly 0 being IBC. I will reach 6 years in March. I hope this gives you some encouragement that it can be a chronic illness such as others and be kept stable. NED sounds good but some of us don't fit into that catagory but we fit into the "stable" catagory and can live a good quality of life. No one knows how long we have or how the journey will be so we take a day at a time and live it to the fullest. For you that may be hard to do right now but it will come. Sending you a big hug for the New Year. Sandy __________________ Dx. 03/01, Rt. IBC AC/Taxatere Rt. MRM-with graft Lt. simple 5 rads-skin mets Herceptin, taxol, carboplatin (taxol seem to be the magic drug) Navelbine & xeloda (did not work) topical miltex for skin mets Tykerb/xeloda thoracentesis x 2 left lung fluid shows cancer cells Port removal (4 years) with power port replacement Doxil Updated 05-07 Scans show no bone or organ involvement we shall see! I shall not pass this way again. Any good I can do or any kindness that I can show let me not defer or neglect it for I shall not pass this way again.