what is NED?

Portal Forums Q&A, Ask Us New Questions what is NED?

This topic contains 4 replies, has 3 voices, and was last updated by  gillbarnes1960 3 weeks, 3 days ago.

Viewing 5 posts - 1 through 5 (of 5 total)
Author Posts   
Author Posts
April 1, 2018 at 2:29 am  #1294164    

gillbarnes1960

Hi,
I am pleased that on my last scan I was declared NED. However, I am not comfortable with this because I have the same symptoms as prior to diagnosis. Surely if I have symptoms then these are evidence of disease? I had symptoms for quite a while (years) before my SCLC diagnosis but on the whole they were discounted because nothing was evident on imaging. I would like treatment to continue as I am convinced that my symptoms are from some residual tumor. Is it normal to have to wait until the tumor shows on imaging again to have more treatment, irrespective of symptoms?
Thank you for any information,
Gill

April 1, 2018 at 7:10 am  #1294167    

cards7up

SCLC is treated differently than NSCLC. SCLC does tend to respond well to first line chemo and then can recur within a short amount of time. Do you have limited or extensive? NED only means they see no disease at this time, not that you’re cancer free. What symptoms are you having that are continuing even though you’ve finished treatment? How long ago did you finish treatment?
Take care, Judy


Stage IIIA adeno, dx 7/2010. SRS then chemo carbo/alimta 4x. NED as of 10/2011.
Local recurrence, surgery to remove LRL 8/29/13. 5.2cm involved pleura. Chemo carbo/alimta x3. NED

April 1, 2018 at 8:11 am  #1294168    
JimC Forum Moderator
JimC Forum Moderator

Hi Gill,

Congratulations on the terrific scan results. In general, cancer doesn’t cause significant symptoms until there is enough tumor mass to have an effect on body systems, and many symptoms can be non-specific (they can be caused by any number of conditions other than cancer). For example, if you still experience fatigue after your treatment results in NED, it could be that your fatigue has another cause, or it could be a lingering effect of the treatment, as just about any form of anti-cancer therapy can cause fatigue. So it certainly matters which symptoms are continuing.

There are two ways to judge the efficacy of cancer treatment – improvement in scans and clinical evaluation of the patient. If scans are clear, treatment is usually stopped, and follow up scans are used to check for recurrence or progression. If symptoms seem to be cancer-related and are worsening, your oncologist may wish to resume treatment. In that case, if scans remain clear, then the only way to judge whether the treatment is working would be an improvement in symptoms.

JimC
Forum moderator


Jul 2008 Wife Liz (51/never smoker) Dx Stage IV NSCLC EGFR exon 19
4 cycles Carbo/alimta, 65% shrinkage
Tarceva maintenance
Mar 2010 progression, added Alimta, stable
Sep 2010 multiple brain mets, WBR
Oct 2010 large pericardial effusion, tamponade
Jan 2011 progression, start abraxane
Jun 2011-New liver, brain mets, add Tarceva
Oct 2011-Dx Leptomeningeal carcinomatosis; pulsed Tarceva
At rest Nov 4 2011
Since then: http://cancergrace.org/blog/jim-and-lisa

April 1, 2018 at 8:15 am  #1294169    
JimC Forum Moderator
JimC Forum Moderator

I should add that although with SCLC it doesn’t happen as often as we’d like (certainly not as often as with NSCLC), if the diagnosis is limited stage SCLC then some patients may be cured with treatment. More often SCLC tends to recur, and when that happens, usually that’s when treatment is resumed.

JimC
Forum moderator


Jul 2008 Wife Liz (51/never smoker) Dx Stage IV NSCLC EGFR exon 19
4 cycles Carbo/alimta, 65% shrinkage
Tarceva maintenance
Mar 2010 progression, added Alimta, stable
Sep 2010 multiple brain mets, WBR
Oct 2010 large pericardial effusion, tamponade
Jan 2011 progression, start abraxane
Jun 2011-New liver, brain mets, add Tarceva
Oct 2011-Dx Leptomeningeal carcinomatosis; pulsed Tarceva
At rest Nov 4 2011
Since then: http://cancergrace.org/blog/jim-and-lisa

April 1, 2018 at 11:16 am  #1294172    

gillbarnes1960

Thanks for answering my question, I will try and not worry too much until my next scan. I do not feel that my symptoms are getting worse and they are pretty generic with malaise and aches and pains.
Thank you.
Gill

Viewing 5 posts - 1 through 5 (of 5 total)

You must be logged in to reply to this topic.