7 years NED, stage 4

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testing765
Posts: 306
Joined: Tue Aug 19, 2014 9:41 am

Re: 7 years NED, stage 4

Postby testing765 » Mon Oct 02, 2017 11:08 am

Very encouraging. I am happy for you.
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- colonoscopy- 3 polyps removed
10/15- CT scan, NED
10/16- CT scan, NED, CEA 1.6
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

Ehut
Posts: 169
Joined: Wed Sep 26, 2012 4:24 pm
Location: Algonquin, IL

Re: 7 years NED, stage 4

Postby Ehut » Mon Oct 02, 2017 11:53 am

Congrats! I'm at 5 years NED, stage IV myself.

Just curious, does your insurance keep covering scans beyond 5 years?
Dx 12/11 rectal stage IV w/ 6 mets to liver
4 cycles FOLFOX 12/11 to 2/12
5 days radiation 2/12 (European protocol)
rectal/liver resection 3/12, temp ileostomy
8 cycles FOLFOX/FOLFIRI 4/12 to 8/12
ileostomy reversal 10/12
port out 10/13
Currently NED!

radnyc
Posts: 277
Joined: Tue Apr 06, 2010 6:32 pm

Re: 7 years NED, stage 4

Postby radnyc » Mon Oct 02, 2017 12:09 pm

thank you all!
Ehut, yes my insurance covers the cost of CT scans and all other procedures. I'm also at MSKCC, which may have something to do with that.

Al
DX Jan '10, at 47
Feb - colon resection - 2/17 nodes
April - liver mets - Stage 4
3 months Folfox chemotherapy
August '10 liver resection and HAI pump
7 months chemo FUDR HAI and Folfiri systemic
NED since August 2010
Last treatment April '11
HAI Pump removed Dec '15

Ehut
Posts: 169
Joined: Wed Sep 26, 2012 4:24 pm
Location: Algonquin, IL

Re: 7 years NED, stage 4

Postby Ehut » Tue Oct 03, 2017 12:33 pm

I've gotten conflicting messages about how long to continue scans. My local oncologist recommended no more scans after 4 years (relying on stable and low CEA numbers), and an oncologist at Mayo (my original onc at Mayo retired) recommended this year's scan be the last (5 years). But my Mayo surgeon recommends at least a couple more years, whether insurance covers it or not. I'm going with my surgeon for now.
Dx 12/11 rectal stage IV w/ 6 mets to liver
4 cycles FOLFOX 12/11 to 2/12
5 days radiation 2/12 (European protocol)
rectal/liver resection 3/12, temp ileostomy
8 cycles FOLFOX/FOLFIRI 4/12 to 8/12
ileostomy reversal 10/12
port out 10/13
Currently NED!

bitchslapped
Posts: 1317
Joined: Tue Sep 09, 2014 3:23 pm
Location: PNW/USA

Re: 7 years NED, stage 4

Postby bitchslapped » Tue Oct 03, 2017 9:08 pm

radnyc wrote:Bitchslapped, the reason I'm concerned with more testing is that there's evidence out there that CT scan exposure increases the chances of even harder to treat cancers years later. I've be had over 20 Ct/PET scans that's a LOT of exposure. If I were say 70 years old I wouldn't care as I would probably die before anything would happen. I'm 55, so I'm concerned.
If there were other non radiation options I would do them in an instant.


To your point...I get it. My DH was young also. Asked his liver surgeon about that one time re: CT's. He said the amount of radiation is so small...well worth the risk in his opinion. However this was back in 2005.
My mindset is if you've had over 20, what's 3 more (assuming once yearly for the next 3 yrs), but who really knows the tipping point given the risks you are reading about. Hopefully IF you were ever to have a recurrence, you would be much older.

Best wishes to you in making the choice that sounds right for your particular circumstances.

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
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

mariane
Posts: 567
Joined: Sun Sep 13, 2015 6:16 pm

Re: 7 years NED, stage 4

Postby mariane » Wed Oct 04, 2017 9:54 pm

Al, congratulations!!!!

I am not happy with the radiation from scans either.
Is CEA really such a good, stable marker to you?? There are always pros and cons...
mom of 8 years old twins, dx @ 40 with upper rectal cancer, 10+ liver mets in 6/2015, 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!

mpbser
Posts: 281
Joined: Wed Apr 19, 2017 11:52 am

Re: 7 years NED, stage 4

Postby mpbser » Thu Oct 05, 2017 2:49 pm

Congrats! re: it seems more of us are staying around longer -- great news to newbies such as my husband me!
Wife 4/17 Dx age 45
5/17 - Lap left hemi
Adenocarcinoma
5 x 4 x 1 cm
low grade
T3 N2b M1a
Stage IV A
lymph nodes: 9 of 54
8/17 Sub-total colectomy
2nd tumor 5.5 cm width T1 N0
CEA: 1.4 Pre-op; 2.1 2 days Post-op
MSS/MSI-L
Lynch no; KRAS wild
Immunohistochemsistry: Normal expression of MLH1, MSH2, MSH6, and PMS2
Tumor DNA variants: MTOR, APC, TP53

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CRguy
Posts: 9230
Joined: Sun Feb 10, 2008 6:00 pm

Re: 7 years NED, stage 4

Postby CRguy » Fri Oct 06, 2017 12:21 pm

radnyc wrote:Clear CT scan. I asked doc if we could stop the yearly tests, he left it up to me. He likes to go for 10 years with his patients. I told him I'd think about it. Been on here since 2010, a lot of people have passed on, but, it seems more of us are staying around longer. A good sign. Health and peace to all, those still in the battle DON'T GIVE UP!

Al

Sorry I missed this earlier :oops:
Great news and great advice !!!

Mega Cheers for many happy returns
CRguy
Caregiver x 3
Stage IV A rectal cancer/lung met
10 Year survivor
my life is an ongoing NONrandomized UNcontrolled experiment with N=1 !
Review of my Journey so far

User avatar
dianetavegia
Posts: 2614
Joined: Sat May 16, 2009 8:47 pm
Facebook Username: Diane Weldy Tavegia
Location: Villa Rica, Georgia
Contact:

Re: 7 years NED, stage 4

Postby dianetavegia » Thu Oct 12, 2017 8:58 pm

My onc moved me to one yearly scans for another year or 3, depending on my comfort zone. Since I'm turning 67 and have had a million CT scans, MRI, PET, X rays, Mammograms, etc., another couple won't make any difference.

I had my visit with my onc's PA on Tuesday, Oct. 10th and will get my CEA back tomorrow. As long as it remains between my norm of 2.7 to 3.4, I'll only have a chest low dose CT and an abdominal MRI once a year.

The anxiety was much less than ever before, tho I do keep looking to see if the CEA has been released.

I was dx'd Jan. 2, 2009 tho I'd been told what to expect on New Year's Eve when I had an emergency visit for a blockage. Surgery and 6 months FOLFOX then nothing until Feb. 2012 when my CEA had gone up from 3.9 to 6.4 and a liver met was found. Had a liver resection in April 2012 with 80% of my liver removed and no chemo. NED since.

Cross your fingers, say your prayers that my CEA remains within my norm!

Oh I am so ready to be done with cancer! There are now DAYS that I forget I ever had it!
Diane
Stage IIIB cc surgery 1/7/09. 5/17 nodes. 12 tx FOLFOX
Stage IVa 2/15/12. CEA 6.4 PET = 1.5cm liver met. HR 4/11/12 No chemo

NED at scan April 2017 Eight yrs, 3 months since original dx. Five yrs. 6 months post liver resection.
“O Lord my God, I cried out to You, And You healed me.”
Psalms 30:2

Noon32316
Posts: 34
Joined: Sun May 08, 2016 11:33 am

Re: 7 years NED, stage 4

Postby Noon32316 » Sun Oct 15, 2017 11:26 pm

Very Inspirational. Congratulations to you.
3/16: Dx colon cancer (sigmoid). Age: 36
4/16: PET/CT, Sigmoidectomy, Port installed
5/23/16 to 11/30/16: Folfox - 12 tx, no oxaliplatin for #11 & #12
11/5/16: PET/CT - NED
3/21/17: Colonoscopy = clear
9/27/17: CT scan = pathologically enlarged retroperitoneal lymph nodes - nodal metastases
10/5/17: CT guided needle biopsy
10/13/17: Confirmed - Recurrence

CEA '16 & '17: < 0.5
Original Dx: Stage 3C, T4a, N2b, Grade 3, 16/16 lymph nodes, infiltrating signet-ring cell carcinoma
Lynch negative

NedPlease
Posts: 516
Joined: Fri Mar 23, 2012 3:56 pm

Re: 7 years NED, stage 4

Postby NedPlease » Mon Oct 16, 2017 2:57 pm

Wonderful news!!

I too am wrestling with no further CT surveillance and when I see my onc next summer, perhaps I'll have an answer to how I feel about no more scans per her recommendation. Protocol (if there really is such a thing for Stage 4) is no more scans for me but as evidenced on this forum, docs have different opinions. A no radiation MRI would be welcome but more CT radiation does concern me- even at age 61.

I am grateful to have this "problem" to sort out.
I wish we all did.

Congrats to you and continued health,
N
F-54- St 4- Ascend Colon, 2 Liver mets, Poorly dif, Mutant
6/10- Folfox
9/10- R Liver Resect/Colon/Gall/Appendix
11/10-3/11- Folfox
11/11- R Lung, 1 met, VATS
3/12- 9/12- Xeloda
2/12- 7/17 Clear Scans
Today- NED

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Shana
Posts: 115
Joined: Sun Jul 30, 2017 9:45 pm
Location: Sonoma, CA

Re: 7 years NED, stage 4

Postby Shana » Tue Oct 17, 2017 12:11 am

NedPlease wrote:Wonderful news!!

I too am wrestling with no further CT surveillance and when I see my onc next summer, perhaps I'll have an answer to how I feel about no more scans per her recommendation. Protocol (if there really is such a thing for Stage 4) is no more scans for me but as evidenced on this forum, docs have different opinions. A no radiation MRI would be welcome but more CT radiation does concern me- even at age 61.

I am grateful to have this "problem" to sort out.
I wish we all did.

Congrats to you and continued health,
N


Glad to hear of your successful treatment, good news is always uplifting! Stay well and keep in touch!
DX - 12/16
MSS - KRAS wild
Stage IV colon cancer with liver mets
5FU - Failed twice - 1/17 and 3/17
Irinotecan + Cetuximab: 8/17 - 2 wks on, 1 wk off to lessen side effects
CT-Scan 9/1/17. Shrinkage of liver mets (4 measurable) and no bowel blockage (surgery on 6/17 for blockage)
Removal and resection not on the table at this time as long as liver mets remain.
BB- aka colostomy is new high maintenance friend... she was a life saver
Living the new normal day by day :)


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