Jump to content



Recommended Posts

I thought I posted this earlier today but can't find it anywhere so forgive me if I am repeating. The moderator can take it out if it's a duplicate.

I would be very interested to hear from anyone who has been NED at any time during their cancer journey. How long were you on treatment before you showed no evidence of disease? If your cancer recurred, how long did your NED last? If you're still NED, how long has your cancer been in remission? When you were (are) NED, did you stay on treatment? What kind of cancer at what stage do you/did you have? Your feedback would be very helpful to me.

Judy in Key West

Link to comment
Share on other sites

Hey Judy. Not sure if my answer will help you. I had a lobectomy (ULL ) last September. Then I had 4 rounds of Adjuvant Chemo beginning in December and finished in March. Been NED since Lobectomy. I was stage 1b.

Link to comment
Share on other sites

Bruce, of course you are one of the lucky ducks with the low dx number, but yes, it does. You had a couple of months off after surgery, then 4 months of chemo while you were NED. I didn't have surgery but if I stop after the Sep 23 infusion I will have done 6 months while knowing I was NED. I think it will be 9 infusions. If you figure I was probably NED after the six mega chemos (I had two Avastin maintenance before the scans), I will have done 11 maintenance infusions. I just don't want to stay on it until progression. If this thing is going to come back, I would like to have had a little time of feeling more like myself and time to get some of my old strength back. I did really well in the first round of this fight they believe in part because I was so healthy.

Link to comment
Share on other sites

Hi Judy,

Here's my scoop:

Mar 2004 Surgery to remove left lung 6 weeks recovery - NED after surgery

May 04-Aug 04 Cisplastin/VP16/Taxotere Total 15 doses over 12 week period/30 radiation - NED thru entire period

Sept 04-Apr 05 Iressa maintenance trial/daily - NED thru entire period

Apr 05-Jan 06 No treatment - NED

Jan 06-Dec 06 One spine met, one pelvic met - started Avastin ev 3 weeks, tarceva daily and zometa ev 6 wks. Ned within 2 months of starting these drugs.

Jan 07-Jan 08 Tarceva daily NED

Jan 08 - one new spine met, started Avastin ev 3 wks and continuing tarceva daily. Currently have one spine met, one thyroid met - stable and a partial response


Link to comment
Share on other sites

Altho I had my first surgery inAug.05,my chemo treatments never ended until Dec.05.My onco doesnt start my ned date until the end of my chemo completion and not my surgery date. My last CT scan and checkup was in December and I was still ned at that time.My next scan and checkup will be this Dec.unless something should look suspicious. So I am already getting a little nervous. Dr. West said that most recurrances happen within the first 2 or 3 years altho they may happen later.

Link to comment
Share on other sites

  • 4 weeks later...

Surgery Feb. 10, 2003. Staged IIIa, adenocarcinoma. Six weeks later, had 38 (?) rounds of radiation therapy, after that, began one year trial of Iressa. Removed two months later, side effects were too much.

At the time of my diagnosis, the jury was still out on chemo after surgery. Had it been an option with my oncologist, I would have done it for that little bit of a boost.

Per my scans in March, I've been NED over five years. Sure want to keep that streak going!

Link to comment
Share on other sites

Ned and I have been close friends for years! I love him. If he ever leaves me I don't know what I'll do except search for him again. We first met back in 1998 and have been close ever since. I will soon be an eleven year survivor, I believe Stage IIB as per size of my tumor and the fact it touched my lung lining and nerves and vessels in my shoulder.

Donna G

Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Reply to this topic...

×   Pasted as rich text.   Restore formatting

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

  • Create New...

Important Information

By using this site, you agree to our Terms of Use. We have placed cookies on your device to help make this website better. You can adjust your cookie settings, otherwise we'll assume you're okay to continue.