Tuesday, March 29, 2016

Melanoma abbreviations ~ and random thoughts on posting melanoma crap-ola....


Here is a list (not at all comprehensive!) of abbreviations frequently used in melanoma discussions per the request of a melanoma patient on the MRF forum having trouble getting through the acronyms. It was fairly well received (though I'm not sure everyone read the ENTIRE list!!!) so I thought I would share it here:



NED - no evidence of disease
NEAD - no evidence of active disease (a rather new acronym in melanoma world)
Mets - metastatic disease
SLN - sentinel lymph node (the node most proximal to the lesion)
WLE - wide local excision (the area of tissue to remove around  a lesion to provide standardized accepted clear margins)
CLND - complete lymph node dissection (removal of all nodes in local area)
SRS - stereotactic radio surgery (radiation beamed in to one area from a variety of vantage points so surrounding tissue has minimal damage)
WBR - whole brain radiation
Immunotherapy - treatment that stimulates the immune system to attack tumors (types below)
Ipi - ipilimumab/yervoy - anti-CTLA 4 immunotherapy
Anti-PD-1 - nivo = nivolumab/opdivo or pembro = pembrolizumab/keytruda
ifn - interferon
Targeted therapy - therapy aimed at  a specific variation in a tumor 
BRAF or NRAS or CKIT ....some labels for different variations in tumors
BRAFi - BRAF inhibitors - meds for folks with those mutations
MEK - another place to block tumor metabolism.  MEKi (MEK inhibitors) have been found to make BRAFi work better, last longer, with fewer side effects and so are most often prescribed with BRAF inhibitors.
PR - partial response
CR - complete response
SD - stable disease
ORR - overall response rate
DFS - disease free survival
PFS - progression free survival
OS - overall survival
DLT - dose limiting toxicity
AE - adverse event
Ir AE - immune related adverse event
WTF - whiskey tango foxtrot - you gotta have a sense of humor!
(Folks.....if you like this...please refer folks back to this cause...IDHTS (I don't have the strength!) To type this again!
Hope this helps. Wishing you all my best. Celeste

I crack myself up!!!  Hee hee!!!  Later I shared it with a friend; watching her face as she read it through.  Her eyes widened and she looked up at me!!  "You really are you!!!  All the time!"  Yep!  That's all I got, so I guess I'll stick with it.  And...while I don't for one moment believe that positivity will cure cancer, a sense of humor will sure make it a little less painful.

Obviously, I still blog (and occasionally share on the melanoma forums) the latest data in melanoma research.  It takes a great deal of time and effort.  At times I long to stop.  Still, I know I have access to information that others do not.  And...perhaps...the ability to share it in ways that makes it a bit more comprehensible to others.  I receive frequent emails from folks looking for additional information.  Those are a mixed bag.  Some incredibly demanding and critical.  Not long ago a writer really said...."I guess I could actually read your blog and find the answers to my questions, but, are you the one who had melanoma or what?"  (Wow!!!  The answer to that one seems pretty clear at the very top of the page! Not that she stopped there!!!) Others are clearly desperate or utterly confused.  Some intelligent, thoughtful and appreciative.  Still others never bother with a thank you or kiss my foot (including the one mentioned above!!!). But, many have become dear friends.  A mixed bag indeed!!  And, yes.  Against the advice of some who care about me....I answer them all.  Melanoma doesn't make you nice or smart....folks are....or aren't.  But, it can make you out of your mind with worry and fear...so I try to give folks a chance.  And before you start feeling sorry for me....or get the impression that I am feeling sorry for myself....the support of many...especially 'MY boys!!!' - Josh, Ed, Mat, Jonathan, Paul, Steven, John, Eric, and Brian helps keep me going and can make me laugh out loud.  Many others will live in my heart forever.  In total...a much greater gift to me, than any I have given.

These comments by Ed and Paul still make me smile:  Abbreviation post!

Whiskey Tango Foxtrot!!!! - c 

3 comments:

  1. I too laughed out loud at your list. Although, it really is so helpful in deciphering the language of melanoma. Also, your willingness to share your knowledge and experience has been godsend. You are a wizzarding seamstress combined with Florence Nightingale administering to Melanoma patients worldwide.
    Allyson

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  2. You are too sweet and generous...but thanks.

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