Congrats Jay, I am right there with you 3 years six months.
Like you we here in Canada have all our health care paid for butt we have further/longer follow up treatments. I get a yearly scan for five years and blood work every six months so I have two more scans to go. There has never even been a hint of reducing treatments after my complete response. I kinda like it that way.
3-Year Scan results
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Kick'nAssCancer'sAss
- Posts: 248
- Joined: Tue Feb 25, 2014 4:38 pm
Re: 3-Year Scan results
53M Dx RC Halloween 2013
CT & BONE scan
MRI/T3N0M0 1 suspicious LN
5 wks chemo/rad
LAR open TME Feb 26/14
temp bag
0/24 nodes pCR/pathological
Folfox (8) Mar 28-Jul 4 /14
Aug/14 clear CT scan
Aug 27/14 reversal
Feb/15 clear scope
July/15 Feb/16 Feb/17 Feb/18 clear CT scans
Feb/18 clear scope
Sept 19 clear CT scan & DISCHARGED
Mar/23 clear scope
CEA 1.6 @ dx
1.6,1.4,1.7,2.4,2.9, 2.7 2.3 2.5 2.2 2.1 2.5 2.6 2.7
2.7 Sept 19
0-4 normal
https://kickingasscancersass.blogspot.com/
CT & BONE scan
MRI/T3N0M0 1 suspicious LN
5 wks chemo/rad
LAR open TME Feb 26/14
temp bag
0/24 nodes pCR/pathological
Folfox (8) Mar 28-Jul 4 /14
Aug/14 clear CT scan
Aug 27/14 reversal
Feb/15 clear scope
July/15 Feb/16 Feb/17 Feb/18 clear CT scans
Feb/18 clear scope
Sept 19 clear CT scan & DISCHARGED
Mar/23 clear scope
CEA 1.6 @ dx
1.6,1.4,1.7,2.4,2.9, 2.7 2.3 2.5 2.2 2.1 2.5 2.6 2.7
2.7 Sept 19
0-4 normal
https://kickingasscancersass.blogspot.com/
Re: 3-Year Scan results
That is fantastic news 
I find myself lurking & posts like this are truely uplifting. I'm sure deep down the fear will never completely go, but for now I think you will be able to find peace with the continued NED result. Good stuff!
Shona x
I find myself lurking & posts like this are truely uplifting. I'm sure deep down the fear will never completely go, but for now I think you will be able to find peace with the continued NED result. Good stuff!
Shona x
Dad diagnosed Sept 14 Stage IV. Age 57yrs. Transverse colon - spread to Retroperitoneal, Mesenteric & Supraclavicular lymph nodes. Folfiri commenced Sept 14.
April 15 - Bowel resection
August 15, stable scan
Feb 16 - No signs of cancer on scan...stop chemo & scan in 3 month
Scan April 16, Crazy growth to stomach, lymph nodes & multiple mets to liver. Commencing Folfox.
August: chemo not working. Stopped treatment.
September 3rd 2016 peacefully left this earth.
April 15 - Bowel resection
August 15, stable scan
Feb 16 - No signs of cancer on scan...stop chemo & scan in 3 month
Scan April 16, Crazy growth to stomach, lymph nodes & multiple mets to liver. Commencing Folfox.
August: chemo not working. Stopped treatment.
September 3rd 2016 peacefully left this earth.
Re: 3-Year Scan results
Congrats!!! Time to celebrate!
mom of now 14 years old twins, dx @ 40 in 6/2015 with upper rectal cancer, 10+ liver mets, CEA 140
chemo: 8/2015 - 10/2016 - 4xFOLFIRINOX, 2xFOLFOX, 8xFOLFIRI, 10x5FU, HAI pump -12xFUDR
4 surgeries, complete pathological response
CEA<2 since 10/2015
NED since May 2016
I praise God for every day with my family!
chemo: 8/2015 - 10/2016 - 4xFOLFIRINOX, 2xFOLFOX, 8xFOLFIRI, 10x5FU, HAI pump -12xFUDR
4 surgeries, complete pathological response
CEA<2 since 10/2015
NED since May 2016
I praise God for every day with my family!
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bitchslapped
- Posts: 1538
- Joined: Tue Sep 09, 2014 3:23 pm
- Location: PNW/USA
Re: 3-Year Scan results
Congratulations Jay. You've gotten some good tools here for your belt. Now all you have to do is be a nuisance (persistent) & hopefully that will get you somewhere 
Best Wishes
BS
Best Wishes
BS
DSS,35YO,unresect mCRC DX 7/'14,lvr,LN,peri,rib
FOLFOX+Avstn 4 Rnds d/c 10/'14
Stent 9/'14
FOLFIRI+Avstn 10/'14
Gone From My Sight 2/20/15
Me:garden variety polyps + precancerous polyp, diverticulitis
Carergver x2 DH,DM dbl occupancy,'03-'10
DH dx 47YO mCRC,'04-'07, lvr, billiary tree fried x HAI
DM dx CC 85YO,CC,CHF,stroke,dementia,aphasia
FOLFOX+Avstn 4 Rnds d/c 10/'14
Stent 9/'14
FOLFIRI+Avstn 10/'14
Gone From My Sight 2/20/15
Me:garden variety polyps + precancerous polyp, diverticulitis
Carergver x2 DH,DM dbl occupancy,'03-'10
DH dx 47YO mCRC,'04-'07, lvr, billiary tree fried x HAI
DM dx CC 85YO,CC,CHF,stroke,dementia,aphasia
Re: 3-Year Scan results
NZJay wrote:= 3 years and 6 months NED today.
I shall now partake in some gin.
Yes, partake away!
I am a Stage IVb so I understand your concerns. It would be good if you could get the 4 and 5 year scans. That said, you are definitely in "diminishing chances of recurrence" territory now! Congratulations!
Stage IVb, liver/lung mets 8/4/2010
Xelox+Avastin 8/18/10 to 10/21/2011
LAR, liver resec, HAI pump 11/2011
Adjuvant Irinotecan + FUDR
Double lung surgery + ileo reversal 2/2012
Adjuvant FUDR + Xeloda
VATS rt. lung 12/2012 - benign granuloma!
VATS left lung 11/2013
NED 11/22/13 to 12/18/2019, CEA<1
Xelox+Avastin 8/18/10 to 10/21/2011
LAR, liver resec, HAI pump 11/2011
Adjuvant Irinotecan + FUDR
Double lung surgery + ileo reversal 2/2012
Adjuvant FUDR + Xeloda
VATS rt. lung 12/2012 - benign granuloma!
VATS left lung 11/2013
NED 11/22/13 to 12/18/2019, CEA<1
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PainInTheAss
- Posts: 678
- Joined: Tue Jul 02, 2013 3:08 am
Re: 3-Year Scan results
My Onc recommended annual scanning because of my age, but I pushed for twice a year. When I couldn't get a PET approved to check on a node that wasn't removed during surgery, I discovered that an MRI is just as sensitive as a PET and better for the pelvis area than a CT. Now I do MRI for pelvis and abdomen and only chest CT every six months. Its a nice compromise between peace of mind and radiation exposure. That's something you could look into if you can't get follow up approved.
The stats I remember is that around 10% of recurrences are found after 3 years, 5% after 4 years and around 2% after 5 years. How do they find them if monitoring stops? I did not want to be one of those unlucky ones. I already won the colorectal lottery just getting it in the first place.
The stats I remember is that around 10% of recurrences are found after 3 years, 5% after 4 years and around 2% after 5 years. How do they find them if monitoring stops? I did not want to be one of those unlucky ones. I already won the colorectal lottery just getting it in the first place.
47yo single mom of 4 (24, 21, 18, 16) at Dx
6/13 - RC T4b IIIc 5LNs on PET CEA 5.4
8/13 - Finish chemorad
10/13 - APR/hyst+ovaries/perm colostomy 2/12 nodes+
6/14 - Finish Xelox 6 rds
1/15 - CT clear CEA 0.2
10/15 - CT/MRI clear CEA 0.7
4/16 - CT clear
10/16 - CT/MRI clear CEA 0.6
5/17 - PET clear? Follow up MRI to verify inflammation
6/13 - RC T4b IIIc 5LNs on PET CEA 5.4
8/13 - Finish chemorad
10/13 - APR/hyst+ovaries/perm colostomy 2/12 nodes+
6/14 - Finish Xelox 6 rds
1/15 - CT clear CEA 0.2
10/15 - CT/MRI clear CEA 0.7
4/16 - CT clear
10/16 - CT/MRI clear CEA 0.6
5/17 - PET clear? Follow up MRI to verify inflammation
Re: 3-Year Scan results
Congrats on the wonderful news. I've followed your story since I joined Colon Talk. You were a bit more active online then, but I guess I was too. I hope you stick around to keep us updated on your continued NED status!
Wife to DH/ Father of 6 (age 42 at dx) diagnosed Jan 2015 stage IIIC
Tumor deposit in mesentery 13/24 lymph nodes +
CEA at dx: 5
MSS
Low Grade/Mod. Diff.
FOLFOX 6 months
N.E.D until June 2018
PET Scan 6/18
Biopsy confirms cancer in 3 Paraaortic lymph nodes
Folfiri + Avastin (6tx) and Xeloda during radiation
Cancer all over both lungs dx Jan 2019
FOLFIRI +AVASTIN presently
Tumor deposit in mesentery 13/24 lymph nodes +
CEA at dx: 5
MSS
Low Grade/Mod. Diff.
FOLFOX 6 months
N.E.D until June 2018
PET Scan 6/18
Biopsy confirms cancer in 3 Paraaortic lymph nodes
Folfiri + Avastin (6tx) and Xeloda during radiation
Cancer all over both lungs dx Jan 2019
FOLFIRI +AVASTIN presently
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testing765
- Posts: 324
- Joined: Tue Aug 19, 2014 9:41 am
Re: 3-Year Scan results
This is great news. I've been following your journey since I was diagnosed in August, 2014 and I hope to follow in your footsteps.
male-age 44 at diagnosis
8/14-clnscopy
8/14-CT scan,no mets
9/14-left colectomy,CEA 2.2 before surgery
pT2pN2bpM0
3 cm tumor in dscnding colon
7/23 pos LNs
low grade MSI stable
10/14-start folfox
1/15-CT & PET scan and sigmdoscopy- no mets
3/15-finish folfox
9/15- clnscopy- 3 polyps removed
10/15- CT scan, NED
10/16- CT scan, NED, CEA 1.6
10/17- clnscopy- 4 polyps removed, CT scan NED, CEA 1.8
10/14 1.9; 4/15 2.8; 5/15 2.4; 9/15 2.8; 12/15 3.1; 1/16 3.0; 4/16 2.5; 7/16 2.5; 10/16 1.6; 1/17 1.9
8/14-clnscopy
8/14-CT scan,no mets
9/14-left colectomy,CEA 2.2 before surgery
pT2pN2bpM0
3 cm tumor in dscnding colon
7/23 pos LNs
low grade MSI stable
10/14-start folfox
1/15-CT & PET scan and sigmdoscopy- no mets
3/15-finish folfox
9/15- clnscopy- 3 polyps removed
10/15- CT scan, NED
10/16- CT scan, NED, CEA 1.6
10/17- clnscopy- 4 polyps removed, CT scan NED, CEA 1.8
10/14 1.9; 4/15 2.8; 5/15 2.4; 9/15 2.8; 12/15 3.1; 1/16 3.0; 4/16 2.5; 7/16 2.5; 10/16 1.6; 1/17 1.9
Re: 3-Year Scan results
At my last visit to Oncologist, who insisted in the past that CT scans did not increase long term survival rates, he admitted that he learned that there is benefit to scanning stage 3 for 5 years. I didn't have to argue with him this time, and like you, I'm still unconvinced that I'm NED, since I have some lung nodes.
Resection of splenic flexure 7/24/13
T3N2BM0, Stage 3c,12/29 nodes
Folfox x12 9/13-3/14
CT scan 4/14, enlarged spleen, otherwise clear
CT 4/15, spleen WNL.
6/17 3 cm benign polyp at ileocecal valve, awaiting removal
T3N2BM0, Stage 3c,12/29 nodes
Folfox x12 9/13-3/14
CT scan 4/14, enlarged spleen, otherwise clear
CT 4/15, spleen WNL.
6/17 3 cm benign polyp at ileocecal valve, awaiting removal
Re: 3-Year Scan results
Jay,
Congratulations, that is a major milestone. May you always reside in NEDville,
Lee
Congratulations, that is a major milestone. May you always reside in NEDville,
Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 16 years and counting!
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 16 years and counting!
Re: 3-Year Scan results
Congratulations Jay. 3.5 years is a big deal. Stay NED, and I really hope you would be allowed to get a few more scans, it's worth the peace of mind.
Diagnosed 4/8/16, age 29
Colectomy 4/20/16
Stage III, T4bN1 Tumor 7x6.5x2. Muscinous Adenocarcinoma with SRC features
2/16 lymph nodes
Stage IV, Peri mets 5/2019
CEA 4/14/16 - 16.8
CEA 6/2/16 - 1.9
CEA 6/17/16 - 0.87, 7/16 - 1.33, 12/16 - 1.14, 4/17 - 0.6, 7/17 - 0.5, 10/17 - 0.9, 3/19 -5.8, 4/19 -10
FOLFOX began 6/24/16 - 11/25/16, FOLFIRI - 5/10/19
10 round FOLFOX, 2 round 5-FU & Leucovorin, 1 round FOLFIRI
MRI & CT 8/16 - NED, CT 12/16 - 10/17 - NED
Colectomy 4/20/16
Stage III, T4bN1 Tumor 7x6.5x2. Muscinous Adenocarcinoma with SRC features
2/16 lymph nodes
Stage IV, Peri mets 5/2019
CEA 4/14/16 - 16.8
CEA 6/2/16 - 1.9
CEA 6/17/16 - 0.87, 7/16 - 1.33, 12/16 - 1.14, 4/17 - 0.6, 7/17 - 0.5, 10/17 - 0.9, 3/19 -5.8, 4/19 -10
FOLFOX began 6/24/16 - 11/25/16, FOLFIRI - 5/10/19
10 round FOLFOX, 2 round 5-FU & Leucovorin, 1 round FOLFIRI
MRI & CT 8/16 - NED, CT 12/16 - 10/17 - NED
Re: 3-Year Scan results
Congratulations! That is great news, glad to hear it. 3.5 years is a real milestone, well done.
It can be tricky getting the DHB to pay for a CT I have had to pay for my own on occasion. My recurrence was only found when I insisted on a scan and I had to have it done privately.
Prices are high but not $2,000 - for a CT at Pacific Radiology in the Hutt, chest, abdo pelvis is about $1,200. Interestingly the cost at Pacific Radiology in Christchurch is about 1/3 lower (they have prices on their website). I haven't tried it yet but am tempted to spend a few dollars on a Jetstar flight to Christchurch to save hundreds if I need to. Another economy I tried was to have a CT chest and an ultrasound abdomen pelvis which cost a lot less but not as accurate.
Anyway, that's something to think about in the future - in the meantime enjoy this freezing weekend and we might get some real snow to cool down your gin.
It can be tricky getting the DHB to pay for a CT I have had to pay for my own on occasion. My recurrence was only found when I insisted on a scan and I had to have it done privately.
Prices are high but not $2,000 - for a CT at Pacific Radiology in the Hutt, chest, abdo pelvis is about $1,200. Interestingly the cost at Pacific Radiology in Christchurch is about 1/3 lower (they have prices on their website). I haven't tried it yet but am tempted to spend a few dollars on a Jetstar flight to Christchurch to save hundreds if I need to. Another economy I tried was to have a CT chest and an ultrasound abdomen pelvis which cost a lot less but not as accurate.
Anyway, that's something to think about in the future - in the meantime enjoy this freezing weekend and we might get some real snow to cool down your gin.
dx T3N1M0 Feb 2011 when children age 11, 7 and 2
Xeloda/rad March 11, LAR June 11 temp ileo
Xelox 6 rounds, NED
Lung mets Oct 13
Laser surgery Germany Jan 14. 3 mets left lung.
Laser surgery UK Jun and Aug 14 one met each lung, NED
Aug 14 Started Xeloda and Celebrex (ADAPT)
June 20 CT shows nodule, bronchoscopy confirms is scar tissue, still NED
Dec 20 stopping Xeloda continue celebrex, cimetedine
Aug 21,March 23 scans show still NED
March 2023 CURED - discharged from Oncology, no more scans or follow up
Xeloda/rad March 11, LAR June 11 temp ileo
Xelox 6 rounds, NED
Lung mets Oct 13
Laser surgery Germany Jan 14. 3 mets left lung.
Laser surgery UK Jun and Aug 14 one met each lung, NED
Aug 14 Started Xeloda and Celebrex (ADAPT)
June 20 CT shows nodule, bronchoscopy confirms is scar tissue, still NED
Dec 20 stopping Xeloda continue celebrex, cimetedine
Aug 21,March 23 scans show still NED
March 2023 CURED - discharged from Oncology, no more scans or follow up
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Joannerogers
- Posts: 260
- Joined: Tue Jun 16, 2015 4:50 pm
Re: 3-Year Scan results
I'm raising a glass of cab to you! Heart felt congratulations! I'm right behind you! (2 years for me after my good scan this month)
53yo married 27 years, 2 children, 24 and 25
Diagnosed april 23,2015 rectosigmoid
Starting CEA 1845
Port placement and liver bx April 27
Folfox started april 29
Avastin added on May 6
Stage IV crc with mets to 50% of liver
10/13/15 dc'd transfusion #12...toxic
Pet/ct scan on 11/3/15
20% liver resected all margins clear 11/30/15
8/18/15 cea 21.
9/15/15 cea 13.9
10/13/15 cea 14.4
1/22/2016 cea 2.5
LAR 02/15/16 all clear
Diagnosed april 23,2015 rectosigmoid
Starting CEA 1845
Port placement and liver bx April 27
Folfox started april 29
Avastin added on May 6
Stage IV crc with mets to 50% of liver
10/13/15 dc'd transfusion #12...toxic
Pet/ct scan on 11/3/15
20% liver resected all margins clear 11/30/15
8/18/15 cea 21.
9/15/15 cea 13.9
10/13/15 cea 14.4
1/22/2016 cea 2.5
LAR 02/15/16 all clear
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Steph20021
- Posts: 553
- Joined: Sat Dec 27, 2014 4:58 pm
- Location: Ontario, Canada
Re: 3-Year Scan results
I'm so jealous Jay, congratulations! Party party!
DX 1/31/14 @ 33- SPS-T4a(invades visceral peri), N2a(6/106 LN), M1a(ovary) (Stage 4a) MSS; BRAF V600E
2/1/14-subtotal col, lost R ovary, temp ileo
3/14-9/14- folfox; sepsis
11/14-CT/PET: L ovary met, pelvic met, (?)ghost liver met(?)
12/14-folfiri -13 rds kept me stable from 3/15-6/15
8/15-HIPEC, NED
09/15- cea 0.9
05/16- recurrence in abdo wall and lymph nodes
01/17- pulmonary embolism
02/17- 1 wk radiation to abdo wall
08/16- on folfiri
01/18-folfox
11/18- Beacon trial-encorafenib & cetuximab
2/1/14-subtotal col, lost R ovary, temp ileo
3/14-9/14- folfox; sepsis
11/14-CT/PET: L ovary met, pelvic met, (?)ghost liver met(?)
12/14-folfiri -13 rds kept me stable from 3/15-6/15
8/15-HIPEC, NED
09/15- cea 0.9
05/16- recurrence in abdo wall and lymph nodes
01/17- pulmonary embolism
02/17- 1 wk radiation to abdo wall
08/16- on folfiri
01/18-folfox
11/18- Beacon trial-encorafenib & cetuximab
Re: 3-Year Scan results
Congratulations NZJay, wonderful news!!
20 feb 17 Went in for a colonoscopy, woke up with cancer
21 feb 17 LAR descending colon, Stage 3c
27 mar 17 port in
29 mar 17: 12 sessions FOLFOX.
51 yo F, married with 3 teenage girls
21 feb 17 LAR descending colon, Stage 3c
27 mar 17 port in
29 mar 17: 12 sessions FOLFOX.
51 yo F, married with 3 teenage girls
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