how long did it take you to get to NED

[karyn]

Hi Everyone

My mom got her results today of the CTScan. Previously she had only an ultrasound when first diagnosed with liver mets, so they really couldn't compare the ultrasound to the CT, but they did say that there was no disease progression and that the tumour cells looked irregular which usually tells them that the chemo is working. I realize this is great news, but I think a small part of us was disappointed as we had hoped to see a complete disappearance (which the dr told us today was not very realistic). My question to all of you is, how long did it take to reach NED status? She will continue on the Taxotere and Herceptin for 9 more weeks, and then she will have another CT scan- obviously this time we can get a more accurate picture as they will be able to compare the scans. Anyways, just wanted to hear from your experiences.

Thanks

Karyn

[Lisa]

Karyn,
Believe me, I know how you feel! I was diag with liver and bone mets in Sept. 03. Each CT scan showed some remission and I was hoping for NED on my last scans a couple of weeks ago. But the same 3 tiny spots remained. (Started with 25% of liver involvement.) Still, I was removed from chemo after 9 months with the thought that these could still be tumors OR scar tissue and we'd continue to keep an eye on them. So I have to settle for VLED (very little evidence of disease). You'll find the NED experiences run the gamut.

Love and light to you and your mom,

Lisa

[Beth]

It took me 10 weeks of Taxol/Herceptin to get to NED. Precaution of 10 additional weeks of Taxol/Herceptin: still NED. I had liver mets 6.87 cm. I have been on maintenance Herceptin
for about 6 weeks now.

[Brian]

It took my wife about one year and 3 months to get to NED. She first took 6 months of taxotere and Navilbene which caused three 1cm tumors in her liver to disappear, and reduced her 7cm tumor in her lung to 3cm. While preparing to remove her lung tumor three tumors began to grow in her liver. She was placed on herceptin and gemzar and in eight weeks the tumors had shrunk by over half. She had RFA on two of those tumors and one was removed. The tumor that was removed had no living cancer in it. By August of last year the remaining tumor in her lung shrunk to nothing. The only thing that can be seen at this point is residual scar tissue.

[Steph N]

Seems ODD that they did not do a baseline SCAN before starting treatment for your Mom.
I had major mets to liver and very minor in bones and hit them hard with Taxol, navelbine and Herceptin.
I had these drugs weekly for about 7 months. Then when the CT scan was quite clean had a PET scan to confirm that the few small spots left in my liver were actually scars and now they are all gone.
Been good friends with NED for 2 years now.
All the best for your MOm and the progress she has is really hopeful.