Stage 4/NED-how long did it last for you?
 

I have a scan on 23 Oct and have been NED since Jan 07 so 2 years and 9 months.

I was wondering that since I was a very aggressive grade 3 with very fast tumours (qualified as terrorist tumours by a radiologist) I kind of think that if they should have been back they would have been by now...Except for Missy it seems to me that stage 4 seems to relapse within 2 years or then go on to become long term NED..

Is this an impression or am I completly wrong..(???) if you could say either how long your stage 4 NED has lasted before first relapse or hopefully how long it has been so far and what grade you were it would be good to know.

Thanks

Re: Stage 4/NED-how long did it last for you?
 

Hi
I have been NED for 4 years less 9 weeks. I had one 15 mm spot on the liver which disappeared rapidly. Been on Vit H for 4 years, now having a herceptin holiday.
Cheers
Jackie (down under)

Re: Stage 4/NED-how long did it last for you?
 

Hi Full of Beans,

So sorry to be the one to ruin our stats...really sorry. I did go 3 years and two months. A very great ride if I do say so myself. Anyway, I am going strong after my resection. H only for now. Technically, NED again!

Love you,
missy

Re: Stage 4/NED-how long did it last for you?
 

It will be 4 years in December that I was diagnosed, stage IV..2 small lung mets to lungs...I am grade II. At my 6 weeks into chemo another scan was done and they could not see anything noticeable, although I continued chemo for 4 months. I have been NED ever since. I get scans every 6 months, along with brain scans. I continue on Herceptin indefinately. My oncologist told me that in all likely hood, if I were to relapse it would be in the first 2 years, he expected the first 7 months. I'm still NED and feeling great, like my old self. Here's to long NED for all..sherryg

Re: Stage 4/NED-how long did it last for you?
 

Hi Full of Beans,
I was diagnosed in October 2007, and started chemo at the end of November. Completed chemo in March 2008. My April 2009 PET/CT showed a recurrance in the liver.

So...it appears my case supports that if the Vit H can't quite win the battle, it does so quickly.

But....I was a grade 3, so I wasn't surprised.

I am SOOO hoping for you that being this far out is a great sign that those pesky cancer cells are "gone baby gone"

Lori

Re: Stage 4/NED-how long did it last for you?
 

Thank you all for the replies and it seems that your Sherry's doc agrees with this theories.. Missy the trial in washington may have slow down process (I hope that I do not fit in that category) but glad that you are doing so well now..

grrrr scan time soon..I am getting used to it but always at the back of my mind..

Re: Stage 4/NED-how long did it last for you?
 

Hi Honey,
I was diagnosed stage 4, grade 3 in April, 2004 and have been NED since my first round of Chemo (Herceptin/Navelbine).... 5 and 1/2 years and counting! God speed to you; and hoping you too dance with NED for a long time.
Love Kim from CT

Re: Stage 4/NED-how long did it last for you?
 

Each time I have a "progression", it is aroud 18 months. This disease stinks..So many wonderful people have shared their progress, ups and downs etc..
I go back to my Doc. on the 24 and we will see what is going on . He mentioned trying a new drug.. And I forgot to ask him again.. It threw me into a minor panic while I was trying to absorb this. Will find out in a few days, I hope my port is still in good shape (Jan 09) has been itching like crazy.

Re: Stage 4/NED-how long did it last for you?
 

I love to hear about good long NED stories and feel sorry for the less lucky one that have recurred. except for Missy which I knew about the story seems to be that 2-3 years even for stage 4 is a major defining period..more testimony would be great.

I am always in two minds, being quite young part of me wants to just get back to thinking that I should just get on and make little sacrifice now and invest time now for later i.e working hard at something for future rewards..

And part of me knows what my risks are to recur and I just want to live for the now and not care,

Re: Stage 4/NED-how long did it last for you?
 

What a great thread. Encouraging.... You go girls!!!

It would be interesting to track the similarities if any are obvious for those with such good fortune.

TRS

Re: Stage 4/NED-how long did it last for you?
 

Hi Beans -
Hope your latest scans and lab work will show that all is boringly the SAME as last time - NED.

You are familiar with my story, but for those who are not - I am NED from ears to toes since July of 2002. This is after a fast and furious tumor invasion of my liver. Two brain mets were caught in Jan of 2005, and nothing since that time.

So my answer is "still lasting." Indefinitely, I pray.

I continued to take Herceptin every three weeks until last December. My latest blood work and CT scans show I am still holding my own with NED.

There are some here like Andi who has had longer time with NED than I have.

Re: Stage 4/NED-how long did it last for you?
 

So far so good for me, too. Scans every 3 months and just on Tykerb now.

Re: Stage 4/NED-how long did it last for you?
 

Well well.. 3 years perhaps 3.5 years seems to include a lot of the stage 4 than have recurred, with the first 2 years being quite critical..

This is encouraging would love to hear from all stage 4 stories..

StephN it is never "boring" to hear that I am still NED, will get my result next week.. so I trully hope to be very boring to you!!!;-)

Re: Stage 4/NED-how long did it last for you?
 

Got the result of my scan yesterday I am still NED yipehh!.. 2yr 9 months..

Re: Stage 4/NED-how long did it last for you?
 

Wonderful!!!!
I love this thread, and am delighted you ladies are doing so well:)
Congrats Fullofbeans, I could'nt be happier for you!

Re: Stage 4/NED-how long did it last for you?
 

Great news, FOBeans!!

all the best
caya

Re: Stage 4/NED-how long did it last for you?
 

Here is my signature...

Re: Stage 4/NED-how long did it last for you?
 

Dear Beans -
Well - thanks for the "boring" news. No change. No change is good!

Looks like all the work you went to in getting the HER2 vaccine, change eating habits, and exercise has been very positive for you.

Let's have more of the same-old, same-old next time! http://her2support.org/vbulletin/ima...ons/icon12.gif

Re: Stage 4/NED-how long did it last for you?
 

Wish I could have been eligible for that TDM-1 trial, but it has never gone my way...