The last thing I expected at my MSK appt today

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The last thing I expected at my MSK appt today

Postby ginabeewell » Mon Jan 13, 2020 3:46 pm

I had major scanxiety going into yesterday's scan - to the point where I was in tears waiting for my consults with Drs Kingham and Kemeny today.

Instead, Dr Kingham told me my scan was clear - yay! And my CEA is holding constant at 1.2.

And, even more exciting - Dr Kemeny said that since it has been over three months since my surgery and my last chemo, mop-up chemo doesn't really serve a purpose. Instead she wants me to just come back for scans every two months so they can continue to monitor me. WUT??

I think I may literally still be in shock. I'm elated and also scared out of my mind, all at the same time. OMG!

My drain is still in - they will either remove it or re-position it at my IR procedure on Wednesday. But I have to thank the little bugger. If it had come out any sooner, I probably would have started mop up chemo as per usual.
45 year old mom of twins (8) and lucky stepmom of 14 and 16 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets
9/20/18 CEA 931
10/1/18 FOLFOX + Vectibix planned 12 rounds
12/12/18 CT scan showed typhlitis (7 days in hospital) but largest met down to 5 cm. Chemo holiday.
12/26/18 CEA 4.6
1/14/18 Resume chemo (#6-8)
3/27/19 HAI pump placement / colon resection
4/8/19 Resume chemo (#9-19) FOLFOX (no OX) + Vectibix
5/20/19 CEA 1.3
7/19/19 1st liver resection
10/16/19 2nd liver resection

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Re: The last thing I expected at my MSK appt today

Postby CRguy » Mon Jan 13, 2020 3:51 pm

Takin' the WINS where we find them !!!!!!

I would say a good way to start the year
Cheers and best wishes
Caregiver x 4
Stage IV A rectal cancer/lung met
13 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

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Re: The last thing I expected at my MSK appt today

Postby Mrned82 » Mon Jan 13, 2020 4:01 pm

Good news....time to plan another holiday :D
male 37- italy/uk
stage 4 colon cancer with liver/lung mets since 2017
folfiri + cetuximab
7/2018 liver resection
09/2018 colon resection
38 rounds of chemo ...and still going on....

Posts: 396
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: The last thing I expected at my MSK appt today

Postby Claudine » Mon Jan 13, 2020 5:14 pm

That is such wonderful news!! May your follow up scans keep coming clear! Then you can join the ranks of those who drop by every few years and give the rest of us hope :D
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A
No primary (involuted?)
Lytic tumor L4 vertebrae, EBRT 04/18, SBRT 02/19
Resect small intestine 05/18 (no cancer - Crohn's)
Failed adjuvant Xelox
Folfiri + Avastin 03/19 to 01/20
6.7 cm left adrenal mass 03/19, successful resection 02/20
CEA since 03/19: high 58, low 3.2, now 4.4
Scan 03/19: Multiple small lung nodules up to 5mm
Scan 12/19: one 1mm stable nodule
PET 04/20 uptake by L4
L3-L4-L5 fusion surgery and residual tumor removal 05/20

Posts: 441
Joined: Mon Oct 01, 2018 4:29 pm

Re: The last thing I expected at my MSK appt today

Postby Punky44 » Mon Jan 13, 2020 6:27 pm

What great news!
Caregiver to my amazing mom (68 at dx)
10/1/18 DX with rectal cancer; CEA 17
Total neoadjuvant therapy:
8 rounds Folfox 11/5/18 - 2/11/19
Short course radiation 3/14/19 - 3/20/19
Robotically assisted laparoscopic LAR 3/21/19
Pathology report says yT2N0M0 with 0/38 nodes
6/28/19 Reversal and port out
CEA 2.1; 1.9; 2.6; 2.8; 2.3
Latest update: 6/20–Clear CT, normal CEA

Me: 34, first colonoscopy 11/16/18—normal! Come back in 5 years.

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Joined: Thu Oct 25, 2018 6:22 pm

Re: The last thing I expected at my MSK appt today

Postby cartech78 » Mon Jan 13, 2020 6:45 pm

First of all, that is amazing news! Im so happy for you and to not have to do any clean up chemo is really awesome. It was really great to meet you and your husband today! I had my fingers and toes crossed that you would get good news. I know when the scan confirmed i was NED I literally cried and I never cry. Go celebrate and have a fancy dinner! You deserve it!!!!
40 Y/o male
Dx 10/5/18 stage lV CRC
Sg colon T3N1bM1a
Histologic grade-G2
7 inoperable liver mets largest 4.5 cm
Colon resection 10/6/18 clean margins
Starting FolFox on 11/18
2nd opinion at MSK on 12/18
HAI pump installed on 3/6/2019 also found 20 more small tumors on liver scans missed
7/2/2019 MRI and CT show only 2 liver tumors visible and they are shrunk by 3/4
11/25/19- Liver resection at MSK- got out all cancer and am NED. Thank God! More scans and mop up chemo to follow.
1 month Scan clear!

Posts: 340
Joined: Tue Dec 25, 2018 8:08 pm

Re: The last thing I expected at my MSK appt today

Postby AmyG » Mon Jan 13, 2020 6:49 pm

I am ridiculously happy for you!!!!!
42 dx @ 9wks pregnant w/baby #8 8/18
Sigmoid colon resection 9/18
Adenocarcinoma, G2, T3N0M0..or so we thought
Liver biopsy is malignant, stage iv now boys!
Delivered healthy baby 3/19
FOLFOX + Avastin 5/19
CEA 167 to 24 after 4 rounds
Liver resection 8/28/19
NED!! CEA 2.3
CEA 5.8 idk wtf is up with that, but everything else is clear!
CEA 3.7 make up your damn mind...
CEA 1.5 that's a new low!

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Joined: Thu Aug 01, 2019 10:58 am

Re: The last thing I expected at my MSK appt today

Postby Siti » Mon Jan 13, 2020 6:52 pm

Sounds like awesome news! From inoperable liver mets to NED!
I am really happy for you — time to enjoy your lake house since spring is fast approaching.
Wife of DH (54) DX on 5/7/19
CEA value: 1.2
T loc: Sigmoid
T type: Adenocarcinoma
T grade: G3
Pos LNs: 30/31
Wild Type for KRAS, NRAS and BRAF
19/7/19 PET-CT Scan: Distant lymph nodes (para-aorta, neck & hip), est. size 0.5-1.5cm.
22/7/19 Surgery: Laparoscopic Colon Resection
26/8/19 Chemo: CAPEOX + Avastin x 9
6/11/19 CT Scan after 3rd cycle, all nodes have shrunk! Yay!!

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Location: PHX

Re: The last thing I expected at my MSK appt today

Postby ChiMama » Mon Jan 13, 2020 10:21 pm

Yes! Happy dance time!!
4/21/16 First Colonoscopy @59
DX high grade dysplasia
Scans: fibroid uterus, liver cysts, lung nodules
6/17/16 Open surgery: hysterectomy, X 12.5cm sigmoid, 29 LN
T2N0M0 Stage 1 Mod diff adeno 5.2cm x 4.1. Gyne benign, Lynch neg
CT 7/27/16 Ground Glass & spiculated lung nodules, thyroid nodules, watching.
2017/18/19 Scopes: polyps. Scans stable
2019 Endo: hiatal hernia, schatzki ring. 2 breast biopsies (benign)
05/20 GGN to 1.1cm. Biopsy: adenocarcinoma/primary lung cancer
Mama to a rescue Chihuahua

Posts: 39
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Re: The last thing I expected at my MSK appt today

Postby Vana3 » Fri Jan 17, 2020 10:54 am

Yay! I was thrilled to read your post and so happy for you!
36 year old mom of 3 kids (10 year old twins and a 6 month old)
5 cm tumor in cecum removed with clear margins
17 out of 45 lymph nodes positive
1 cm omental deposit removed
LVI present
prior to surgery CEA level 5, post surgery 4.2
MSS, KRAS g12d, Braf WT
Mutational burden: 10.9
8/20/19 more scans (CAT, MRI. PET) showed small spots on right lobe of liver
9/19 start Folfox with Avastin continued thru March 2020
1/02/20 CEA 3.6, 2/15- 4.4 3/15- 4.6, 6/05 4.6
Liver resection 4/15/20

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Re: The last thing I expected at my MSK appt today

Postby Jack&KatiesMommy » Fri Jan 17, 2020 12:32 pm

So happy for this wonderful news!!!!

Mommy to Jack (8) now (17) and Katie (4) now (13)
(My Most Precious Things)
Dx 8/11 Stage IV CRC (liver mets) CEA 2,600+
9/11 Folfiri 2/12: Failed Liver Resection
5/12 HAI pump/removed primary
4/13 Liver Resection
8/13-12/15 (10) RFAs lungs
5/17: Upper Left Lobe of lung resected.
02/18: 3 new lymph mets lung
05/18: Keytruda (MSS w/Intermediate TMB): NED CEA: 66.4, 39.2, 23.8, 13, 3.5 1.8, 1.0, 2.8 3.9, 5.0, 5.6, 1.5, .8,

Posts: 240
Joined: Sun May 13, 2018 10:11 pm

Re: The last thing I expected at my MSK appt today

Postby Trying » Fri Jan 17, 2020 7:20 pm

Great news!
38 yr old single mom of almost 2 year old at the time
April 2018 colon cancer stage IV 10 liver mets and peri met. Folfox and 12 rounds oxyplatin
Fec 2018 Down to 2 mets in liver. 8 dissapeared
July 2019 switched to xeloda pills as I prefer to 3 day infusion. Also on avistan
Oct 2019 emergency colostomy due to perforated bowel. ( unreal pain)
Feb 2020 show 2mm tumor increase.
Plan to go back on oxy

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Re: The last thing I expected at my MSK appt today

Postby teacher2017 » Sat Jan 18, 2020 10:23 pm

Wonderful news! I know that shocked feeling! Finally got a break! This a great thing! CLEAR is such a beautiful word!
50 yo mom of 2 (15, 18)
DX stage 3c - 12/17 LN. T3
8" colon resection 9/22/17
6.1cm tumor
folfox 11/17-4/18
CEA -1.4 11/8/17
Colonoscopy- 5/18 - CLEAR!
Cea -1.8 6/18
Cea -2.1. 8/18
8/10/18 Stage 4
1cm met in seg.8 liver
Liver resection-9/18
Cea level-1.5 10/18
Cea level-1.2 12/18
Clear scan-12/5/18
Cea level- 1.1 3/19
Clear scan- 3/19
Cea level-1.2 6/19
Clear scan-6/2/19
Colonoscopy - 7/19 CLEAR
Cea level-1.5 8/19
Clear scan -8/19
Port removal-9/19
Cea level-1.2 10/19
Cea level-1.1 02/2020

Posts: 3471
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Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: The last thing I expected at my MSK appt today

Postby DarknessEmbraced » Sun Jan 19, 2020 11:48 am

Wonderful news! :D
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! :)

Posts: 254
Joined: Tue May 22, 2018 4:04 pm

Re: The last thing I expected at my MSK appt today

Postby Mohrfamily » Sun Feb 16, 2020 4:11 pm

That's so great Gina! We've taken a dip lately but still fighting. So happy for you.
DH dx stage IV liver mets largest 6x6.4 cm
Colonoscopy/endoscopy/port place 5/29
4cm mass in splenic flexure
1st round FolFox 5/30
08/2018 new CT no new lesions, clear lungs, slight decrease in colon.
3/2019 PET scan shows greater than 6-7 liver mets largest measuring 3x3 cm. No growth nothing new.
8/15/19 largest liver lesion 1.9x2.1
9/16/2019 OSU to proceed with surgery implant HAI and colon resection
11/19 resection of colon HAI placed
2/20 CEA back to 1000s, liver worse than when we began-start FOLFIRI

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