I'm NED!

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Aqx99
Posts: 403
Joined: Fri Mar 31, 2017 7:28 am
Facebook Username: aqx99
Location: Pfafftown, NC

I'm NED!

Postby Aqx99 » Fri Dec 08, 2017 7:28 pm

I had my first post-treatment CT on Tuesday and got the results today. NED!! My spleen is a bit enlarged and my liver is at the low end of normal for attenuation, but those are most likely due to treatment. My oncologist is going to look over the scan herself and go over it with me at my next office visit.
Anne, 40
Stage IIIB Rectal Cancer
T3N1bM0
2/21/17 Dx, Age 39
2/21/17 CEA 0.9
3/23/17 - 5/2/17 Chemoradiation, 28 treatments
6/14/17 Robotic LAR w/temp loop ileostomy, ovaries & fallopian tubes removed, 2/21 lymph nodes positive
7/24/17 - 12/18/17 CapeOx, 6 Cycles
7/24/17 Dx w/ovarian cancer
9/6/17 CA 125 11.1
11/27/17 CEA 2.6
12/5/17 CT NED
12/13/17 CEA 2.9
1/11/18 CA 125 8.6
1/23/18 Reversal
3/21/18 CT enlarged thymus
4/6/18 PET NED
7/10/18 CT NED
7/11/18 CEA 2.6
9/18 Bilateral Prophylactic Mastectomy

heiders33
Posts: 363
Joined: Sat Nov 04, 2017 11:08 am

Re: I'm NED!

Postby heiders33 » Fri Dec 08, 2017 7:28 pm

Congrats! Wonderful news.
40 year-old female
May 2017: Dx rectal cancer T3N2M0
MSS, KRAS G12D
6/17: 28 days chemorad
9/17: LAR/loop ileostomy, CAPOX six rounds
3/18: reversal
9/18: liver met, resection/HAI pump, 11 rounds 5FU, 1 round FUDR
11/19 - local recurrence, brachytherapy, 3 weeks targeted radiation
12/21 - end colostomy

Beckster
Posts: 438
Joined: Thu Jan 12, 2017 3:01 pm
Location: New Jersey

Re: I'm NED!

Postby Beckster » Fri Dec 08, 2017 8:32 pm

Congrats!!! What a great Christmas gift!
57/F
DX:(CC) 10/19/16
11/4/16- Lap right hemi(cecum)
CEA- Pre Op (1.9), Pre Chemo (2.5)
Type: Adenocarcinoma
Tumor size:3.5 cm x 2.5 x 0.7 cm
Grade: G3
TNM: T3N0M0/IIA
LN: 0/24
LVI present
Surgical margins: clear
MSS
12/27/2016 - Capeox, anaphylactic
1/2/17 to 6/9/17- Xeloda
6/17,12/17,6/18,12/18,6/19,12/19,12/20,12/21 CT Scan NED :D
CEA- 6/17- 3.6, 9/17- 2.8 12/17-2.8, 3/18-3.1, 6/18-3.0, 9/18 2.8, 12/18 2.5 3/19 3.1 6/19 3.1 9/19 2.6 12/19 2.8 6/20 3.0 12/20 2.7 6/21 2.9,[color=#000000]12/21 2.7[/color]
Clear Colonoscopy 10/17, 11/19,11/21 :D

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susie0915
Posts: 945
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: I'm NED!

Postby susie0915 » Fri Dec 08, 2017 8:40 pm

This is great news. I'm sure you will have a wonderful holiday
58 yrs old Dx @ 55
5/15 DX T3N0MO
6/15 5 wks chemo/rad
7/15 sigmoidoscopy/only scar tissue left
8/15 PET scan NED
9/15 LAR
0/24 nodes
10/15 blockage. surgery,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 C 4mm lung nod
10/17 pel/abd CT NED
11/17 CEA<.5
1/18 CT/Lung no change in 4mm nodule
5/18 CEA<.5, CT pel/abd/lung NED
11/18 CEA .6
5/19 CT NED, CEA <.5
10/19 Clear colonscopy
11/19 CEA <.5

Rikimaroo
Posts: 436
Joined: Tue Dec 20, 2016 8:48 pm
Location: Florida

Re: I'm NED!

Postby Rikimaroo » Fri Dec 08, 2017 8:40 pm

Hurray and congratulations. May your future be NEDville forever. Stay away from processed foods like sausages, hot dogs, bacon. Eat healthier, and live healthier. Good Luck!!

If possible cut out RED meat from your diet as it is known to contribute colorectal cancer.
RC T3N1M0 12/16
MSS - NRAS Mutation
Chemo Rad, CCR - W&W 5/2017
Recurrence 11/2017
CT Scan 11/2017 Liver Met 5.5cm Stable, Stage IV
LAR/Liver Resect 4/2018
Reversal 10/18
CEA highest 500, lowest .8 throughout process, waiting for latest
Recurrence left vesical/pelvic sidewall - 10/7/2019 resect perm bag,
CEA rise Feb/May 3.7, 8.8, 30, Recurrence in Pelvic
CEA 40 right now, but was 57, so folfiri to beat it back down.
Lots of chemo for the past 4 years.

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Robino1
Posts: 463
Joined: Fri Aug 11, 2017 12:09 pm
Facebook Username: Robin.lawthers
Location: Florida

Re: I'm NED!

Postby Robino1 » Fri Dec 08, 2017 8:56 pm

Image ImageImage


Merry Christmas!!! :D
At 54 2014 1st colonoscopy colon cancer detect
Colon resect margins clear. No chemo Stage II
2017
Distend abd, pain in intestines.
CT scan seeding & Ascites
Lap diag - cancer on the omentum
CEA 217; 219
FOLFOX started 6/17
CEA 202
8/29/17 CT melting of tumor.
Latest CT scan shows 2 new tumors and return of ascites.
CEA: (2017)9/30 -109; 10/12 -99.1; 11/4 -90.7; 11/30 -70.7; 12/14 -83.4; (2018)1/4 -73.3; 2/1-84.2; 89.2; 89.8; 88.5; 81.8: 93.5; 107; 119
BRAF V600e

Tdubz
Posts: 152
Joined: Sun May 07, 2017 11:01 am

Re: I'm NED!

Postby Tdubz » Fri Dec 08, 2017 9:53 pm

Congrats!!

Basil
Posts: 275
Joined: Thu Mar 16, 2017 12:33 pm

Re: I'm NED!

Postby Basil » Fri Dec 08, 2017 10:19 pm

My favorite news to hear. Enjoy. Cheers.
40 y/o male (now 46), kids 11 & 14.
Dx 3/16/17, rectal cancer s3,t3,n1,m0
PROSPCT trial (FOLFOX in lieu of chemorad)
FOLFOX 4/5/17 - 6/26/17
LAR 7/31/17, temp ileo
pathological complete response
Adjuvant chemo cancelled (IDEA Study)
Ileo reversed 9/25/17
NED
1 year scans - clear
2 year scans - clear
3 year scans - clear
4 year scans - clear
5 year scans - clear (considered cured)

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

Re: I'm NED!

Postby CRguy » Sat Dec 09, 2017 12:52 am

WORD !

Harmony on the Journey my friend
CRguy
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

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O Stoma Mia
Posts: 1709
Joined: Sat Jun 22, 2013 6:29 am
Location: On vacation. Off-line for now.

Re: I'm NED!

Postby O Stoma Mia » Sat Dec 09, 2017 1:57 am

Aqx99 wrote:I had my first post-treatment CT on Tuesday and got the results today. NED!! ... My oncologist is going to look over the scan herself and go over it with me at my next office visit.

Congratulations on your NED status. Good news!

What I would like to suggest is that you use your next meeting with the oncologist to clarify what, exactly, will be the steps taken for surveillance over the next 5 years.

Since you will probably be seeing your oncologist only once every three months or so from now on, it's important to know what the overall plan will be. You can prepare a list of questions in advance of your next meeting.

Some of the questions might be:

    How often will CT scans be done? Ultrasound scans? Chest x-rays? PET scans? MRI scans? Who will decide which ones?

    How often will tumor marker tests be done? Which ones? CEA? CA19-9? CA125.? Others?

    How often will comprehensive blood panel tests be done (e.g., serum chemistry, CBC, etc.) ?

    When will my next colonoscopy be scheduled?

    What exactly will they be monitoring, and what will they be looking for as critical warning signs?

    What should I (the patient) be doing in the mean time to minimize future problems?

    Which doctor will be in charge of the overall monitoring program? The GP? the oncologist? the surgeon? Note: If your reversal is in January 2018, then it will be the surgeon who will be having the last contact with you, and the oncologist will be essentially out of the picture, unless other arrangements have been made. If you have post-reversal problems, then who will be the primary contact doctor? Who is in charge of controlling your overall followup, including both the cancer-related issues and the LARS/QOL issues?

These are important questions to ask because once the formal followup period starts you be on your own and not be seeing anyone in particular on a regular basis except for once every three months or so -- and a lot of things can happen between one quarterly meeting and another.
.
At the end of treatment, some major cancer centers have a formal hand-over procedure whereby a followup medical team is formally identified and a surveillance program explicitly mapped out and put in place, but at some of the smaller clinics or rural hospitals this is not the case, and you are essentially faced with setting up a kind of Do-It-Yourself surveillance.

You can also download a copy of the Colon Cancer Survivorship Form from the link in the post below, and it will give you an idea what some of the tracking options are-
http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=53128&p=419697#p419697
.
Colorectal Cancer Survivorship Care Guidelines
http://onlinelibrary.wiley.com/doi/10.3322/caac.21286/full

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Robino1
Posts: 463
Joined: Fri Aug 11, 2017 12:09 pm
Facebook Username: Robin.lawthers
Location: Florida

Re: I'm NED!

Postby Robino1 » Sat Dec 09, 2017 7:48 am

O Stoma Mia wrote:
Aqx99 wrote:I had my first post-treatment CT on Tuesday and got the results today. NED!! ... My oncologist is going to look over the scan herself and go over it with me at my next office visit.

Congratulations on your NED status. Good news!

What I would like to suggest is that you use your next meeting with the oncologist to clarify what, exactly, will be the steps taken for surveillance over the next 5 years.

Since you will probably be seeing your oncologist only once every three months or so from now on, it's important to know what the overall plan will be. You can prepare a list of questions in advance of your next meeting.

Some of the questions might be:

    How often will CT scans be done? Ultrasound scans? Chest x-rays? PET scans? MRI scans? Who will decide which ones?

    How often will tumor marker tests be done? Which ones? CEA? CA19-9? CA125.? Others?

    How often will comprehensive blood panel tests be done (e.g., serum chemistry, CBC, etc.) ?

    When will my next colonoscopy be scheduled?

    What exactly will they be monitoring, and what will they be looking for as critical warning signs?

    What should I (the patient) be doing in the mean time to minimize future problems?

    Which doctor will be in charge of the overall monitoring program? The GP? the oncologist? the surgeon? Note: If your reversal is in January 2018, then it will be the surgeon who will be having the last contact with you, and the oncologist will be essentially out of the picture, unless other arrangements have been made. If you have post-reversal problems, then who will be the primary contact doctor? Who is in charge of controlling your overall followup, including both the cancer-related issues and the LARS/QOL issues?

These are important questions to ask because once the formal followup period starts you be on your own and not be seeing anyone in particular on a regular basis except for once every three months or so -- and a lot of things can happen between one quarterly meeting and another.
.
At the end of treatment, some major cancer centers have a formal hand-over procedure whereby a followup medical team is formally identified and a surveillance program explicitly mapped out and put in place, but at some of the smaller clinics or rural hospitals this is not the case, and you are essentially faced with setting up a kind of Do-It-Yourself surveillance.

You can also download a copy of the Colon Cancer Survivorship Form from the link in the post below, and it will give you an idea what some of the tracking options are-
http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=53128&p=419697#p419697
.
Colorectal Cancer Survivorship Care Guidelines
http://onlinelibrary.wiley.com/doi/10.3322/caac.21286/full


This is awesome advice. I'm putting it on my desktop for future reference. Thank you for all you do!
At 54 2014 1st colonoscopy colon cancer detect
Colon resect margins clear. No chemo Stage II
2017
Distend abd, pain in intestines.
CT scan seeding & Ascites
Lap diag - cancer on the omentum
CEA 217; 219
FOLFOX started 6/17
CEA 202
8/29/17 CT melting of tumor.
Latest CT scan shows 2 new tumors and return of ascites.
CEA: (2017)9/30 -109; 10/12 -99.1; 11/4 -90.7; 11/30 -70.7; 12/14 -83.4; (2018)1/4 -73.3; 2/1-84.2; 89.2; 89.8; 88.5; 81.8: 93.5; 107; 119
BRAF V600e

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susie0915
Posts: 945
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: I'm NED!

Postby susie0915 » Sat Dec 09, 2017 9:19 am

I met with a survivorship nurse practitioner who went over my overall case and 5 year plan. It was very informative. I just graduated to 6 month visits. My first colonoscopy was about 5 months after I finished chemotherapy. Since all was good don't have another for 3 years. It is hard to go from seeing somebody regarding your treatment and diagnosis weekly to being on your own and having check ups every 3 months. You feel a loss of control. But it has gotten easier as time goes on although anxiety always sets in when a scan or bloodwork is drawn. Treatment has basically consumed your life during the past year and all of the sudden it's over and you're on your own, even though this is what we all wish for during treatment. It certainly is an adjustment. Still, so happy for your NED status.
58 yrs old Dx @ 55
5/15 DX T3N0MO
6/15 5 wks chemo/rad
7/15 sigmoidoscopy/only scar tissue left
8/15 PET scan NED
9/15 LAR
0/24 nodes
10/15 blockage. surgery,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 C 4mm lung nod
10/17 pel/abd CT NED
11/17 CEA<.5
1/18 CT/Lung no change in 4mm nodule
5/18 CEA<.5, CT pel/abd/lung NED
11/18 CEA .6
5/19 CT NED, CEA <.5
10/19 Clear colonscopy
11/19 CEA <.5

DarknessEmbraced
Posts: 3816
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: I'm NED!

Postby DarknessEmbraced » Sun Dec 10, 2017 7:03 pm

Congratulations!
Diagnosed 10/28/14, age 36
Colon Resection 11/20/14, LAR (no illeo)
Stage 2a colon cancer, T3NOMO
Lymph-vascular invasion undetermined
0/22 lymph nodes
No chemo, no radiation
Clear Colonoscopy 04/29/15
NED 10/20/15
Ischemic Colitis 01/21/16
NED 11/10/16
CT Scan moved up due to high CEA 08/21/17
NED 09/25/17
NED 12/21/18
Clear colonoscopy 09/23/19
Clear 5 year scans 11/21/19- Considered cured! :)

SweetC80
Posts: 103
Joined: Fri Sep 01, 2017 1:28 pm

Re: I'm NED!

Postby SweetC80 » Sun Dec 10, 2017 8:24 pm

Yippee!!! Congratulations!!
My Mom
12/16 Stage IIIb Rectal Ca CEA 1.2
1/17-2/17 Chemoradiation CEA 4.4
5/17 Entire Colon, Rectum & Anus removed Perm Ileostomy Bag
7/17 FOLFOX
9/17 Stage IVb 9cm Liver Met & 7mm Lung Nodule CEA 197
9/17 FOLFIRI CEA 160
10/17 Confirmed KRAS Pos CEA 210
11/17 Met growths Liver 10cm & Lung 8mm CEA 425
12/17 FOLFOX again Met growths Liver 13cm & Lung 1cm CEA 405
12/17 Xifaxan due to Hepatic Encephalopathy
12/17 New 2cm liver Met
1/18 CEA 992
2/8/18 Passed Peacefully

NHMike
Posts: 2555
Joined: Fri Jul 21, 2017 3:43 am

Re: I'm NED!

Postby NHMike » Mon Dec 11, 2017 11:47 am

Hopefully a permanent end to what looks like a long year. Must be a huge relief.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT


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