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#138477 - 08/22/11 10:41 AM When is the 'remission' date from?  
Joined: Aug 2009
Posts: 207
Jeanna F Offline
"OCF Down Under"
Jeanna F  Offline
"OCF Down Under"
Gold Member (200+ posts)

Joined: Aug 2009
Posts: 207
Melbourne, Australia
HI all,

Rod was put into remission 24/02/2011. He finished treatment end July 2009. Can someone please tell me when the remission date starts from? Is it the day you are told that you are in remission, or the last day of treatment? Bit confused...thanks peoples xoxoxo


Jeanna
Wife/Carer of Rod, 56, Dx 5/3/09, SCC Oropharnyx T4 N2, End Tx 28th 07/09, 7wks Rad, 3 Cisplatin, primary tonsil, 4cm Lymph right of neck, 1cm left, in jaw & soft palate & base of tongue. Peg 06/09. CT & PET scans 02/11 - NED. Dentures 20/09/11, PEG out 28/10/11.
#138480 - 08/22/11 12:27 PM Re: When is the 'remission' date from? [Re: Jeanna F]  
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davidcpa Offline
Administrator, Senior Patient Advocate
davidcpa  Offline
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Patient Advocate (old timer, 2000 posts)

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Gulfport, Florida
Remission means there is no more living cancer not even a cell so that's a hard date to pin. Some of us call it the date after surgery with clear margins and some that didn't have surgery call it the date Tx ends hoping that it killed all the current cancer cells. It's just a date that means something to the patient as it would be technically almost be impossible to determine that exact time when the last cancer cell died so pick whatever date you want. I have never used that term, "in remission". I keep 3 dates in mind; the date I was told I had cancer; the date my Tx began and the date my Tx ended and I refer back to them depending on the conversation.


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
#138483 - 08/22/11 02:18 PM Re: When is the 'remission' date from? [Re: davidcpa]  
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Brian Hill Offline
OCF Founder
Brian Hill  Offline
OCF Founder
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Joined: Mar 2002
Posts: 4,736
Boise, ID and Portland, OR
I also never use the term remission. It implies that it has been beaten back but that in some way that is a temporary thing, "you just don't know", is the inflection that I get from the word remission. Cancer being a genetic disease - is a process that is so small and complex that we can't say cured. Most hospitals and doctors will declare you NED (no evidence of disease) at the end of treatment. That's really a clean slate. Or I say to people that I have been cancer free since XXXX.


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
#138485 - 08/22/11 03:49 PM Re: When is the 'remission' date from? [Re: Brian Hill]  
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Posts: 3,082
Charm2017 Offline
Patient Advocate (old timer, 2000 posts)
Charm2017  Offline
Patient Advocate (old timer, 2000 posts)

Joined: Mar 2008
Posts: 3,082
Alexandria VA
As usual, David and Brian's answers are spot on. My first "remission" was indeed temporary. I've been partial to the explanation in one of Brian's older posts (back when he was Member#4)
Quote:
There is no cure for cancer. You are just free of it, for a month, a year, a decade, or until that Mac truck with your name on the bumper comes around the corner, and something else gets you. While we all would like to hear the word cure, healthy for now is what we get. This is part of what it means to be a survivor

Keep the Faith
Charm


65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

Passed away 4-29-13
#138592 - 08/25/11 06:01 AM Re: When is the 'remission' date from? [Re: Charm2017]  
Joined: Aug 2009
Posts: 207
Jeanna F Offline
"OCF Down Under"
Jeanna F  Offline
"OCF Down Under"
Gold Member (200+ posts)

Joined: Aug 2009
Posts: 207
Melbourne, Australia
Thanks guys....all makes sense, and now I agree the word 'remission' is a bit negative. I like NED.


Jeanna
Wife/Carer of Rod, 56, Dx 5/3/09, SCC Oropharnyx T4 N2, End Tx 28th 07/09, 7wks Rad, 3 Cisplatin, primary tonsil, 4cm Lymph right of neck, 1cm left, in jaw & soft palate & base of tongue. Peg 06/09. CT & PET scans 02/11 - NED. Dentures 20/09/11, PEG out 28/10/11.
#139625 - 09/09/11 11:24 PM Re: When is the 'remission' date from? [Re: Jeanna F]  
Joined: Mar 2011
Posts: 26
robinleigh Offline
Contributing Member (25+ posts)
robinleigh  Offline
Contributing Member (25+ posts)

Joined: Mar 2011
Posts: 26
Alabama
I recently decided to call my husband a "survivor" starting from the date he was diagnosed.


Robin, caregiver to husband, Andy (57 yo non-smoker)
1/2011 dx scc stage 4 -primary- tonsil/bot
2/2011 surgery/rnd/ imrt rad/ 3 cycles cisplatin
6/2011 recurrence - mets to bone
7/2011 tx carbo/erbitux/5 FU- pet showed disease progression
11/2011- present clinical trial

#139650 - 09/10/11 03:02 AM Re: When is the 'remission' date from? [Re: robinleigh]  
Joined: Jun 2007
Posts: 9,625
ChristineB Offline
Administrator, Director of Patient Support Services
ChristineB  Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 9,625
PA
My doc told me to count it from the date of diagnosis. She explained that this is the date which you are working towards eliminating the cancer. Im another one who avoids the word remission.


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
#148906 - 04/30/12 09:59 PM Re: When is the 'remission' date from? [Re: ChristineB]  
Joined: Mar 2012
Posts: 50
MissBazinet Offline
Supporting Member (50+ posts)
MissBazinet  Offline
Supporting Member (50+ posts)

Joined: Mar 2012
Posts: 50
Phoenix, AZ
Just found this post as I was just wondering what to say when I go back to work. I know people are going to ask because I used to see most of the same customers weekly and of course, coworkers are always asking how I'm doing. I remember when I was little my grandfather had non hodgkins lymphoma and always said he was in "remission." I first wondered if that term would even apply as my "tumor" and lymphs were removed through surgery and we don't REALLY know what and how much of the radiation killed. I find myself saying "I had cancer" and always wonder if that sounds right...this was the first time I had heard the term NED. Which I don't mind. It is frustrating that people automatically assume you're "cured." I also feel like some (including those closest to me) just expect me to be bouncing around and feeling awesome and "getting back to normal." Like it's SOOOOOO freaking easy. I want to scream "You have NO IDEA what I've been through! My life will never be the same!" You can't just "go back to normal." Ok...sorry...end rant.


Totally didn't mean to Hi-jack the caregiver/co-survivor forum. I found this post through a google search and didn't realize what forum it was in. Sorry!


MissB

Last edited by MissBazinet; 04/30/12 10:02 PM. Reason: Forum

Female,28 yrs old,Non-Smoker/Social Drinker
T3 N1 M0 SCC Dx 11-10-11
11-23-11 Left Hemiglossectomy
11-30-11 Modified Radical Neck Dissection
01-25-12 Removed another spot on BOT, skin graft (left thigh)
38 RADS Tx Finished April 13, 2012
Living life in spite of cancer and not in fear of it!
#150615 - 06/10/12 04:32 PM Re: When is the 'remission' date from? [Re: Jeanna F]  
Joined: Aug 2009
Posts: 207
Jeanna F Offline
"OCF Down Under"
Jeanna F  Offline
"OCF Down Under"
Gold Member (200+ posts)

Joined: Aug 2009
Posts: 207
Melbourne, Australia
Thanks all...Miss B, I know exactly how you would feel, I want to scream sometimes when those questions are asked about my husband. I believe no 2 people are the same, but there is so much ignorance out there it's not funny. So you say 'I have no evidence of disease, or no active cancer', and yep, they think you're cured, but they aren't the ones who have gone through that horrendous treatment with long term side effects. Maybe it's not just my mental problems that prevent me from leaving the house much, but also having to face 'those' questions! I feel for you hon, even though I'm just a carer.....


Jeanna
Wife/Carer of Rod, 56, Dx 5/3/09, SCC Oropharnyx T4 N2, End Tx 28th 07/09, 7wks Rad, 3 Cisplatin, primary tonsil, 4cm Lymph right of neck, 1cm left, in jaw & soft palate & base of tongue. Peg 06/09. CT & PET scans 02/11 - NED. Dentures 20/09/11, PEG out 28/10/11.
#150658 - 06/11/12 01:05 PM Re: When is the 'remission' date from? [Re: Jeanna F]  
Joined: Sep 2006
Posts: 8,311
davidcpa Offline
Administrator, Senior Patient Advocate
davidcpa  Offline
Administrator, Senior Patient Advocate
Patient Advocate (old timer, 2000 posts)

Joined: Sep 2006
Posts: 8,311
Gulfport, Florida
Being a CPA and a local politician I had/have people in and out of my office all day every day. I got SOOOOOOOO tired of being asked "how are you?" or "you OK now?" that I had to restain myself from screaming. To this day I still have those questions now and again.


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.

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