When do you count it as NED?

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kandj
Posts: 314
Joined: Sun Sep 27, 2015 11:29 am

When do you count it as NED?

Postby kandj » Thu May 04, 2017 9:45 am

Just a general question. I am sure everyone has a a different barometer. DH had surgery to remove his liver mets last May, 2016. Is that the start of NED? he had 6 more months of Chemo after that (in addition to the 6 before it). Does NED start after Chemo is done? Or do you wait even longer until your first chemo free, tumor free scan. I am not going to lie, the superstitious part of me doesn't want to call it anything. It is like the cancer cells can hear me and they will be like "Oh yeah, you think he is cancer free? let me just pop back up". DH did have his 2nd scan since ending chemo in Dec 2016 and it was clear. There was a new lung nodule, but Dr. K didn't seem too worried. Ugh, it is never easy and clear is it?
wife to DH, dx 8/15 stage IV @36, 12+ liver Mets
HAI placed 12/15
Liver resect 5/19/2016 15-20 mets (surgeon lost count)
Liver Recurrence 7/2017-radiation
Lung met 10/18 VATS
lung/adrenal gland recurrence 11/19
Adrenal ablation 2/20 VATS 3/20
Radiation: 9/20 adrenal gland, 2/21 pancreatic node
9/2021 liver, 4/22 esophageal node
7/2023 proton therapy: liver
140+ rounds of chemo and counting
Chest nodes, lung nodules, and esophageal nodes currently.

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LPL
Posts: 651
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

Re: When do you count it as NED?

Postby LPL » Thu May 04, 2017 11:33 am

Hi kandj,
Thank you for asking this. I also want to know how to think.
My DH had 4 chemo (one every 2 weeks) before liver surgery and they took a CT-Scan around 4 weeks after surgery. That Scan is not in my signature because I didn't know what to write. His Onc said it was "good".. but I saw that in the Conclusion there was a note about a 'spot' on the liver that 'they' recommended should be watched. (I didn't like the sound of that). Then hubby had the rest of the prescribed chemo, 8 more, and a rest period around 4weeks(?) again and a new CT. This CT concluded that the earlier mentioned 'spot' was nothing to worry about and the Conclusion did not have any such things that they recommended to 'watch'. His Onc called that CT "very good".. That CT is the one I've added to the signature. But just like you say... to me it felt sort of scary (premature?) to write NED - as you can see I wrote "NED for now", actually member Jacques recommended to word it like that and it felt correct to me.
Next check up for hubby is not a CT but an ultrasound in the middle of June.
Sorry - this was not an informed reply to you - just charing how I was thinking when I wrote "NED for now".
DH @ 65 DX 4/11/16 CC recto-sigmoid junction
Adenocarcenoma 35x15x9mm G3(biopsi) G1(surgical)
Mets 3 Liver resectable
T4aN1bM1a IVa 2/9 LN
MSS, KRAS-mut G13D
CEA & CA19-9: 5/18 2.5 78 8/17 1.4 48 2/14/17 1.8 29
4 Folfox 6/15-7/30 (b4 liver surgery) 8 after
CT: 8/8 no change 3/27/17 NED->Jan-19 mets to lung NED again Oct-19 :)
:!: Steroid induced hyperglycemia dx after 3chemo
Surgeries 2016: 3/18 Emergency colostomy
5/23 Primary+gallbl+stoma reversal+port 9/1 Liver mets
RFA 2019: Feb & Oct lung mets

mariane
Posts: 704
Joined: Sun Sep 13, 2015 6:16 pm

Re: When do you count it as NED?

Postby mariane » Thu May 04, 2017 11:58 am

NED starts counting from curative resection.
mom of now 14 years old twins, dx @ 40 in 6/2015 with upper rectal cancer, 10+ liver mets, CEA 140
chemo: 8/2015 - 10/2016 - 4xFOLFIRINOX, 2xFOLFOX, 8xFOLFIRI, 10x5FU, HAI pump -12xFUDR
4 surgeries, complete pathological response
CEA<2 since 10/2015
NED since May 2016

I praise God for every day with my family!

mariane
Posts: 704
Joined: Sun Sep 13, 2015 6:16 pm

Re: When do you count it as NED?

Postby mariane » Thu May 04, 2017 11:59 am

mom of now 14 years old twins, dx @ 40 in 6/2015 with upper rectal cancer, 10+ liver mets, CEA 140
chemo: 8/2015 - 10/2016 - 4xFOLFIRINOX, 2xFOLFOX, 8xFOLFIRI, 10x5FU, HAI pump -12xFUDR
4 surgeries, complete pathological response
CEA<2 since 10/2015
NED since May 2016

I praise God for every day with my family!

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HopeForJesse
Posts: 249
Joined: Wed Feb 24, 2016 9:39 am
Location: Philadelphia

Re: When do you count it as NED?

Postby HopeForJesse » Sun May 07, 2017 6:14 pm

Glad to hear all clear a year later! :D
DH DX 01/16 49 YO inop RC stage IV liver mets
MSS TP53 APC,BRCA2
12/15 CEA 241, FOLFOX to 11/16
LAR/ileo 5/16 Clear margins 1/29 nodes
HAI, reversal, liver resections7/16
FUDR 8/16 -NED 3 mos
Rising CEA 3/17 Xeloda, 5/17 -12/17 Erbitux & Iri stable but lung/lymph mets CEA 2.7
5/18 5 days SBRT radiation to sternum 10/22/18 surgery to remove zyphoid process met
6/11/19 5FU added to cetuximab and irinotecan CEA 16
Ephesians 3:20 Our God is able to do immeasurably more than we can ask or imagine!

Lee
Posts: 6207
Joined: Sun Apr 16, 2006 4:09 pm

Re: When do you count it as NED?

Postby Lee » Sun May 07, 2017 6:51 pm

I was VERY scared to use the words NED or survivor for many years. To use them is to jinks myself. I remember once, my daughter used the word "cured" towards me because I was 2+ years out. I shot back, what makes you think I am "cured". She was 12 or 13 at time and said because Mom the cancer is gone. I reminded her I'm at a prime time for a recurrence, I am far from out of the woods. Please understand, my Onc and I talked about a back up chemo plan if/when I progressed to a stage IV.

I was at my 4 yr Onc visit, when she made a comment about possibly letting me go at the 5 yr mark. I left her office with tears in my eyes. I passed her waiting room with tears streaming down my face. A rush to my car. Once inside "uncontrollable sobbing". Hard uncontrollable sobbing. For the 1st time since my diagnoses, I cried about my cancer, and for the first time, I knew I had beat it.

I was a few months into cancer treatment when I made a comment to some doctor about not being able to cry about my cancer diagnoses. He shot back, because you are in "fighter" "warrior" mode. You can not let your defense down at this time. When you are ready, you will. It would take me 4 yrs to get there.

Personally I'm not sure when NED begins. I've been told many things during the years. Personally I believe when you are ready to use the word NED, that is when you are NED. I've been told you are a "survivor" from time of diagnoses.

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 16 years and counting!

Swirdfish
Posts: 290
Joined: Sun Jun 19, 2016 3:57 am

Re: When do you count it as NED?

Postby Swirdfish » Sun May 07, 2017 8:17 pm

Well I always thought that NED would be when you have a clear scan, sure you have had a resection months before etc etc, but you aren't confirmed NED. I had my resection followed by chemo, and no scans during this time, only pathology reports on my tumour, which doesn't confirm if you have any other troublesome spots. After chemo I asked for a CT scan and it came back no evidence of disease. I think this is the point where you can call yourself NED.
06/2016 Went in for colonoscopy came out with a tumor. Age 35
12cm from verge at junction. Rectal cancer.
Clinical stage T3 NO MO
Temp illestomy
Completed 5FU and Radiation
LAR surgery planned 13 Oct 2016
Completed ULAR surgery 11-10-2016.
0/22 nodes
pT3 N0 M0 R1
Stage 2A

Pathology reviewed and changed
ypT3 N0 M0 R0

Started folfox 21-11-2016
5-4-17 NED
Reversal 12-4-17

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CRguy
Posts: 10473
Joined: Sun Feb 10, 2008 6:00 pm

Re: When do you count it as NED?

Postby CRguy » Sun May 07, 2017 8:47 pm

Depends how you parse the phrase : no evidence of disease

NO evidence of DISEASE is what we all want to hear

NO EVIDENCE of disease is the reality we live with

technically you are NED when your last scan / imaging / testing etc. shows the latter

In reality you are NED when you have confirmation that shows the former

possibly a distinction without a difference, and depends upon the level of confidence in the assessment of the scans !

Cheers all
CR
Caregiver x 4
Stage IV A rectal cancer/lung met
17 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

kandj
Posts: 314
Joined: Sun Sep 27, 2015 11:29 am

Re: When do you count it as NED?

Postby kandj » Mon May 08, 2017 6:01 pm

I think I will just not mention it. It is just a phrase I am not comfortable with. I never thought we would be at this point. I think I was terrified to even think about it to be honest. But DH is doing amazing. He is healthy, feeling good, and Dr. K said "see you in three months" and that is always a good sign from her. We can move forward with our summer plans and travel. Taking a trip of a lifetime with the kids to the UK. Cancer is always going to have a hold of our hearts and minds I think. I just hope it gets less and less.
wife to DH, dx 8/15 stage IV @36, 12+ liver Mets
HAI placed 12/15
Liver resect 5/19/2016 15-20 mets (surgeon lost count)
Liver Recurrence 7/2017-radiation
Lung met 10/18 VATS
lung/adrenal gland recurrence 11/19
Adrenal ablation 2/20 VATS 3/20
Radiation: 9/20 adrenal gland, 2/21 pancreatic node
9/2021 liver, 4/22 esophageal node
7/2023 proton therapy: liver
140+ rounds of chemo and counting
Chest nodes, lung nodules, and esophageal nodes currently.

User avatar
juliej
Posts: 3114
Joined: Thu Aug 05, 2010 12:59 pm

Re: When do you count it as NED?

Postby juliej » Tue May 09, 2017 6:40 pm

CRguy wrote:Depends how you parse the phrase : no evidence of disease

NO evidence of DISEASE is what we all want to hear

NO EVIDENCE of disease is the reality we live with

technically you are NED when your last scan / imaging / testing etc. shows the latter

In reality you are NED when you have confirmation that shows the former

possibly a distinction without a difference, and depends upon the level of confidence in the assessment of the scans !

Totally agree with CRguy! Once you've had stage 4 cancer, no one will ever tell you you're healthy. The best you can hope for (and it's wonderful) is ‘no evidence of disease’. This is less comforting than what you really want: a 100% guarantee that your body is cancer-free. But for many types of cancer the detection methods remain primitive. Absence of evidence is the best you can get.

kandj wrote:I think I will just not mention it. It is just a phrase I am not comfortable with. I never thought we would be at this point. I think I was terrified to even think about it to be honest. But DH is doing amazing. He is healthy, feeling good, and Dr. K said "see you in three months" and that is always a good sign from her. We can move forward with our summer plans and travel. Taking a trip of a lifetime with the kids to the UK. Cancer is always going to have a hold of our hearts and minds I think. I just hope it gets less and less.

Recovery is a strange time; it's not clear when you're allowed to start your normal life again. But the more "see you in three months" you get from Dr. K, the more you start to relax. At least a bit. However, there's not a day that I don't think about cancer. There's a self-consciousness to life now that wasn't there before and sometimes I miss the old me.

Your vacation plans sound wonderful! Look at cancer in the rear-view mirror for awhile -- it's still there but it's slowly receding into the distance. Enjoy every sunrise, sunset, and moment in between. Carpe the heck out of each diem. Don't just survive. Thrive!

Hugs,
Juliej
Stage IVb, liver/lung mets 8/4/2010
Xelox+Avastin 8/18/10 to 10/21/2011
LAR, liver resec, HAI pump 11/2011
Adjuvant Irinotecan + FUDR
Double lung surgery + ileo reversal 2/2012
Adjuvant FUDR + Xeloda
VATS rt. lung 12/2012 - benign granuloma!
VATS left lung 11/2013
NED 11/22/13 to 12/18/2019, CEA<1

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LPL
Posts: 651
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

Re: When do you count it as NED?

Postby LPL » Sun May 21, 2017 4:12 pm

Hi kandj,

If this can add something to your question.
I did some searching/reading regarding definition of NED - and I found these;
From http://www.cancer.net/cancer-types/colo ... nt-options
"A remission is when cancer cannot be detected in the body and there are no symptoms. This may also be called having “no evidence of disease” or NED."
From https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4825322/
"Patients were identified who had an interval of no clinical or radiographic evidence of disease. The frequency and modality of radiographic imaging was at the discretion of the treating physician. NED was defined as a complete response by RECIST criteria on computed tomography (CT) and/or a complete metabolic response on positron emission tomography/CT (PET/CT) as interpreted as NED by the reading radiologist."
DH @ 65 DX 4/11/16 CC recto-sigmoid junction
Adenocarcenoma 35x15x9mm G3(biopsi) G1(surgical)
Mets 3 Liver resectable
T4aN1bM1a IVa 2/9 LN
MSS, KRAS-mut G13D
CEA & CA19-9: 5/18 2.5 78 8/17 1.4 48 2/14/17 1.8 29
4 Folfox 6/15-7/30 (b4 liver surgery) 8 after
CT: 8/8 no change 3/27/17 NED->Jan-19 mets to lung NED again Oct-19 :)
:!: Steroid induced hyperglycemia dx after 3chemo
Surgeries 2016: 3/18 Emergency colostomy
5/23 Primary+gallbl+stoma reversal+port 9/1 Liver mets
RFA 2019: Feb & Oct lung mets


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