jaminkw Posted August 22, 2008 Share Posted August 22, 2008 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 Quote Link to comment Share on other sites More sharing options...
SandraL Posted August 22, 2008 Share Posted August 22, 2008 Hi Judy. I was NED for a very short time after first line treatment before my spine mets showed up. I was on a clinical trial in the interim period but had to get off of that and start 2nd line treatment I hope to meet him again. Sandra Quote Link to comment Share on other sites More sharing options...
Bruce u Posted August 22, 2008 Share Posted August 22, 2008 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. Quote Link to comment Share on other sites More sharing options...
jaminkw Posted August 23, 2008 Author Share Posted August 23, 2008 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. Quote Link to comment Share on other sites More sharing options...
Wendy Posted August 23, 2008 Share Posted August 23, 2008 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 Wendy Quote Link to comment Share on other sites More sharing options...
beatlemike Posted August 23, 2008 Share Posted August 23, 2008 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. Quote Link to comment Share on other sites More sharing options...
stephf1958 Posted September 16, 2008 Share Posted September 16, 2008 My last scans were taken (Brain MRI & Chest CT) 8/15/08 still NED (since 8/31/07) Dx 1/2007 - stage 4 w/brain mets Craniotomy, followed by 6x Taxol & Carboplatin, followed by 17x radiation to hilar nodes, and the cancer just disapeared... Miracles happen. I am thankfull every, single day! Quote Link to comment Share on other sites More sharing options...
jaminkw Posted September 16, 2008 Author Share Posted September 16, 2008 beetelmike, wow, Dec to Dec does sound scary but I just know you'll do great! stephf, good show! I love to hear new people who have known ned for more than a year. Judy in PA Quote Link to comment Share on other sites More sharing options...
Snowflake Posted September 17, 2008 Share Posted September 17, 2008 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! Quote Link to comment Share on other sites More sharing options...
Donna G Posted September 17, 2008 Share Posted September 17, 2008 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 Quote Link to comment Share on other sites More sharing options...
Bud Baker Posted September 20, 2008 Share Posted September 20, 2008 I'm another early stage diagnosis who's known NED ever since my surgery. I hope NED and I become long time acquaintances! Quote Link to comment Share on other sites More sharing options...
blaze100 Posted September 21, 2008 Share Posted September 21, 2008 I've been NED off and on for 8 years.....sometimes the Radiologist reports worrisome, troublesome and suspicious.... but NED always comes back. Barb Quote Link to comment Share on other sites More sharing options...
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