3-Year Scan results

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Joined: Tue Feb 25, 2014 4:38 pm

Re: 3-Year Scan results

Postby muskokamike » Tue May 16, 2017 4:12 pm

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.
53M Dx rc10/31/13
and a huge WTF?....then
CT scan, BONE scan
MRI/T3N0M0 1 suspicious node
5 wks chemo/rad
LAR open TME 2/26/14
temp ileo
0/24 nodes pCR - pathological
Mop up Folfox (8) Mar/28-Jul/4
Aug/14 clear CT scan
8/27/14 reversal
Feb/15 clear scope
July/15 clear CT scan
Feb/16 clear CT scan
Feb/17 clear CT scan
Feb/18 clear scope
Feb/18 clear CT scan
CEA levels 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 Feb 18
0-4 normal

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Re: 3-Year Scan results

Postby Willow.NZ » Tue May 16, 2017 4:29 pm

That is fantastic news :D
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.

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Joined: Sun Sep 13, 2015 6:16 pm

Re: 3-Year Scan results

Postby mariane » Tue May 16, 2017 11:18 pm

Congrats!!! Time to celebrate!
mom of now 9 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!

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Location: PNW/USA

Re: 3-Year Scan results

Postby bitchslapped » Wed May 17, 2017 7:04 pm

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 8)

Best Wishes
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
Carergver x2 DH,DM dbl occupancy,'03-'10
DH dx 47YO mCRC,'04-'07 fried x HAI
DM dx CC 85YO,CC,CHF,stroke,dementia,aphasia

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Re: 3-Year Scan results

Postby juliej » Wed May 17, 2017 7:30 pm

NZJay wrote:= 3 years and 6 months NED today.

I shall now partake in some gin.

Yes, partake away! :D :D :D

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 IV, liver/lung mets 8/4/2010
Xelox+Avastin 8/18/10 to 10/21/11
LAR, liver resec, HAI pump 11/11
Double lung surgery + ileo reversal 2/12
Adjuvant Xeloda 3-9/12
VATS rt. lung 12/21/12 - benign granuloma!
NED 3/17/12 to 5/11/2018, CEA<1

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Re: 3-Year Scan results

Postby PainInTheAss » Wed May 17, 2017 8:07 pm

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.
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

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Joined: Fri Mar 27, 2015 7:16 pm

Re: 3-Year Scan results

Postby CLD » Thu May 18, 2017 5:42 am

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 III CC of Sigmoid Colon (by surgeon) (Oncologist says Stage iv)
Satellite tumor deposit in mesentary
13/24 lymph nodes involved
CEA at dx: 3
Low Grade / Moderately Differentiated
Clear scans so far!!! (Most recent Nov 2017)
Started FOLFOX Feb 2015 / Finished Aug 2015

Posts: 309
Joined: Tue Aug 19, 2014 9:41 am

Re: 3-Year Scan results

Postby testing765 » Thu May 18, 2017 7:59 am

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-CT scan,no mets
9/14-left colectomy,CEA 2.2 before surgery
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

Posts: 172
Joined: Mon Apr 21, 2014 8:39 pm

Re: 3-Year Scan results

Postby cmrl » Thu May 18, 2017 9:45 am

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

Posts: 5557
Joined: Sun Apr 16, 2006 4:09 pm

Re: 3-Year Scan results

Postby Lee » Thu May 18, 2017 11:16 am


Congratulations, that is a major milestone. May you always reside in NEDville,

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 - 10 years and counting!

Posts: 231
Joined: Sat Jul 02, 2016 10:26 pm
Location: Syracuse, NY

Re: 3-Year Scan results

Postby fumaros » Thu May 18, 2017 11:24 am

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
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
FOLFOX began 6/24/16 - 11/25/16
10 round FOLFOX, 2 round 5-FU & Leucovorin
MRI & CT 8/16 - NED, CT 12/16 - 10/17 - NED

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Location: New Zealand

Re: 3-Year Scan results

Postby Sophy » Fri May 19, 2017 9:55 pm

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.
dx T3N1M0 Feb 11 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)
Nov 2017 CT show still NED
Continuing ADAPT

Posts: 259
Joined: Tue Jun 16, 2015 4:50 pm

Re: 3-Year Scan results

Postby Joannerogers » Sat May 20, 2017 7:41 am

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

Posts: 513
Joined: Sat Dec 27, 2014 4:58 pm
Location: Ontario, Canada

Re: 3-Year Scan results

Postby Steph20021 » Sat May 20, 2017 9:31 am

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
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, hysterectomy et al, 2nd temp ileo, NED?
09/15- cea 0.9
05/16- recurrence in abdo wall and lymph nodes
Jan/17- pulmonary embolism
Feb/17- 1 wk radiation to abdo wall
Currently stable suce Aug/16- on folfiri

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Joined: Sun Feb 26, 2017 10:26 pm

Re: 3-Year Scan results

Postby LisaMargo » Sat May 20, 2017 11:52 pm

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

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