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New, , What is NED

WinneyPooh's picture
WinneyPooh
Posts: 318
Joined: Jul 2009

Just new to this group and This cancer ( my second cencer i had HL 10 years ago). Lot of you all talking about NED what is this?
thanks, Winney

rrob
Posts: 160
Joined: Nov 2007

Winnie,

NED is "No Evidence of Disease." It's the best news possible from scan results and means it's time to do a happy dance with the best partner in the world--NED! Everybody wants to get to dance with NED. Hope this helps. There's an earlier post from maybe two or three months ago posted by Trainer explaining lots of the terms. I'll try to find it and bump it up for you.

Rebecca

WinneyPooh's picture
WinneyPooh
Posts: 318
Joined: Jul 2009

That would be great,
Winney

trainer's picture
trainer
Posts: 242
Joined: Sep 2008

I sent this around a few months ago. I was as bewildered and frustrated as you are. Hope these help :

As a fairly new Semicolon, I'm still trying to get a handle on all the shorthand used in messages here. So I was pleased to find this list of terms and abbreviations on The Colon Club site. If you see any errors in this list, please point them out. Hope this list is helpful to others:

Many people new to this disease and new to this board can get lost in the alphabet soup of the terminology. It's almost impossible to read an abstract of a clinical trial without some of these terms and abbreviations.
So here's a start for translation. Hopefully others will augment and amend as necessary:

CRC - colorectal cancer
mCRC - metastatic colorectal cancer
DX - diagnosis
TX - treatment
PX - prognosis
OS - overall survival
PFS - progression free survival - used to describe the time that a patient is stable, or showing no worsening/progression of the disease
DFS - disease free survival - used to describe the time that a patient is NED
NED - no evidence of disease
MRD - minimal residual disease
LN - Lymph node
PSD - peritoneal surface disease - means that the cancer has spread to the abdominal cavity and is on the surface of the organs rather than within the organs
HIPEC - heated chemotherapy used to wash out the peritoneal/abdominal cavity
Met - metastasis
Lesion - something fishy, usually a tumor
Neoplastic process - potentially cancerous activity
Imaging - generally some type of scan or X-ray
PS - Performance Status - a term used to describe your overall ability to function, dressing yourself, eating, physical activity, etc.

FOLFOX - chemo regimen using 5-FU, Leucovorin, and Oxaliplatin (Eloxatin)
Oxi - shorthand for Oxaliplatin
FOLFIRI - chemo regimen using 5-FU, Leucovorin and Irinotecan (Camptosar)
Xeloda (Capecitabine) - Oral 5-FU (pill form)
XELOX - Xeloda and Oxaliplatin - also called CAPOX for CAPecitabine and OXaliplatin
XELIRI - Xeloda and Irinotecan
Bevacizumab (Avastin) - a drug used to stop new blood vessels from forming
Anti-angiogenesis - the process of stopping new blood vessels from forming
VEGF - Vascular endothelial growth factor - the part of the cancer cell dealing with new blood vessel formation
Cetuximab (Erbitux) - HELP!
Panitumibab (Vectibix) - HELP!
EGFR - Epithelial Growth Factor Receptor - the key to Erbitux and Vectibix's actions
KRAS - a part of the DNA of the cancer cell which they now know has a connection to whether the EGFR class of drugs will be effective on your cancer.
KRASwt - Wild Type - means that the cancer's KRAS gene has not mutated and will respond to the EGFR drugs
KRASmt - Mutant Type - means that the cancer's KRAS gene HAS mutated, and thus is unlikely to respond to the EGFR drugs

Peripheral Neuropathy - a side effect of Oxaliplatin in which the nerves in your extremities are damaged and you experience numbness and some loss of use of your hands and feet

Hand and Foot syndrome - a side effect of 5-FU in which your hands and feet become tender and the skin can crack and peel. Can be more common with oral 5-FU (Xeloda)

Anti-emetic - any kind of drug that is used to combat nausea and vomiting

Blood work - I'm punting on that one!

Adjuvant - chemo treatment that follows surgical removal of all the cancer they can find -- it generally refers to treatment done when the patient is presumably cancer free
Neo-adjuvant - chemo that is done prior to surgery both to potentially shrink any known lesions and also to offer some systemic treatment to prevent new lesions from cropping up

Resection - surgically removing a big chunk of something - like your colon or your liver. It offers the best potential for a curative surgery because they can usually take out the cancer, and also some buffer zone tissue which is referred to as the "margin."

Margins - the amount of cancer free tissue surrounding the tumor - they determine this when the resected tissue is sent to the pathology lab
Radial margin - the amount of colon wall that was left cancer free
Longitudinal margin - the amount of colon - lengthwise - that was left cancer free in the chunk that was removed surgically

RFA - Radio Frequency Ablation - this is a localized treatment for tumors where a probe is inserted into the tumor and heated with radio waves to cook the cancer to death. It is often done when the lesions in question cannot be resected for some reason.
Cryoablation - same idea as RFA, but they freeze the tumor instead of cooking it

I'm pasting in stuff from others' posts

ADL = activities of daily life (eating, dressing, showering, etc.)
RCa = rectal cancer
MRC = metastatic rectal cancer
TNM = an attempt at universal staging evaluation that attempts to unify across countries analysis tumors and extent of spread of disease. T refers to tumor and can be modified X-4, N refers to node involvement and is modified X-2 and M refers to metastasis to distant organs, modified X, 1 or 0. The number that follows T or N indicates severity; X indicates it can't be assessed yet, and the number that follows M indicates presence (X for not assessed, 1 for present, 0 for not present.). It will be types out as TnNnMn.
T4N2M1 means tumor spread to distant organs, node involvement to 4 or more regional lymph nodes, mets-yes and is equal to a Stage IV diagnosis. More explanation of the TNM system: http://cancerstaging.blogspot.com/2005/ ... ectum.html

Bloodwork:
CBC: Complete blood count, including both hematology and serum chemistry analysis. Hematology can usually be run quickly, and checks things like white counts and red blood cell counts. Serum chem analysis takes longer (the machine runs more slowly.)

CEA - Carcino-embryonic Antigen - this is a tumor marker for Colon Cancer. Not all colon cancers emit this marker, so it is not useful for every patient. It if is a good indicator for your cancer, they can monitor the trends in your bloodwork. If it starts to trend up then they generally will go on a hunt to figure out what's up.

APR = anterior perineal resection
TPE or CPE = total (or complete) pelvic exenteration (used to be called pelvic evisceration). It's complete removal of all remaining organs in the pelvis, including the bladder, and usually requires double ostomies.
LAR = low anterior resection

TPN = total parenteral nutrition, or nutrient liquid delivered via IV or PICC line.

CR = Complete response to chemotherapy
PR = Partial response to chemotherapy
PD = Progressive disease while on chemotherapy

Refractory - resistant or unresponsive to various chemotherapy treatments

onc = our little term to mean oncologist

palliative = treatments necessary to make patient more comfortable or have less pain

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