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

jml · 01-02-2007, 07:44 AM

HI~
How awful for your doc to make such a prediction!! UGH-so sorry you had to hear that. Remember Lance Amrstrong's dx & the extent of his disease, his poor prognosis, his SURVIVAL, disease free for 10+ years! There is NO stage of this disease that someone hasn't survived. Don't lose HOPE!
I have been Stage IV (liver mets) since my primary dx in May 2002. I initially had a single met, but after not responding to the 1st chemo combo, I progressed to "innumerable, immeasurable" big & small lesions.
Ultimately, Taxol+Herceptin got me to NED!! It did take 49 weeks of treatment (3 diff. combos, but it was the 14wks of TH that did the trick). I was NED for a year, but then had a recurrence in my liver, but just a single, very stubborn met. It would shrink beyond detection while on chemo (TH or TCH for an add'l year), but fire back up once I was off.
Finally, my docs decided that I was a good candidate for a partial hepatectomy. Last December I had a liver resection (55%of my liver)-the entire L lobe w/the lesion. My liver has been NED ever since.
It had always been implied that all those "innumerable, immeasurable" lesions were probably still there, however too small to detect by PET/CT. However, a very thorough path report of the lobe that was removed noted that the only disease that they could find was the single lesion. All else had truly completely resolved...not even scar/necrotic tissue from previous mets. The liver is a truly amazing resilient organ! Thank God!!
I've come across a number of docs who have said insenstive, thoughtless things...I think we all have. But put that aside, hold on to your optimism & don't lose hope.
We are changing the Face of BC & no one can predict what the future holds for anyone of us...except for the Big Man UpStairs!

Keep the Faith~

Jessica

ps-have you had a PET scan to determine if all the disease your CT is showing is truly active & not just scar/necrotic tissue?

01-02-2007, 07:44 AM	#2
jml Senior Member Join Date: Dec 2006 Posts: 415	NO ONE can take away your HOPE!! HI~ How awful for your doc to make such a prediction!! UGH-so sorry you had to hear that. Remember Lance Amrstrong's dx & the extent of his disease, his poor prognosis, his SURVIVAL, disease free for 10+ years! There is NO stage of this disease that someone hasn't survived. Don't lose HOPE! I have been Stage IV (liver mets) since my primary dx in May 2002. I initially had a single met, but after not responding to the 1st chemo combo, I progressed to "innumerable, immeasurable" big & small lesions. Ultimately, Taxol+Herceptin got me to NED!! It did take 49 weeks of treatment (3 diff. combos, but it was the 14wks of TH that did the trick). I was NED for a year, but then had a recurrence in my liver, but just a single, very stubborn met. It would shrink beyond detection while on chemo (TH or TCH for an add'l year), but fire back up once I was off. Finally, my docs decided that I was a good candidate for a partial hepatectomy. Last December I had a liver resection (55%of my liver)-the entire L lobe w/the lesion. My liver has been NED ever since. It had always been implied that all those "innumerable, immeasurable" lesions were probably still there, however too small to detect by PET/CT. However, a very thorough path report of the lobe that was removed noted that the only disease that they could find was the single lesion. All else had truly completely resolved...not even scar/necrotic tissue from previous mets. The liver is a truly amazing resilient organ! Thank God!! I've come across a number of docs who have said insenstive, thoughtless things...I think we all have. But put that aside, hold on to your optimism & don't lose hope. We are changing the Face of BC & no one can predict what the future holds for anyone of us...except for the Big Man UpStairs! Keep the Faith~ Jessica ps-have you had a PET scan to determine if all the disease your CT is showing is truly active & not just scar/necrotic tissue? Last edited by jml; 01-02-2007 at 07:56 PM.. Reason: typos