The last thing I expected at my MSK appt today

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ginabeewell
Posts: 451
Joined: Wed Oct 24, 2018 10:30 am

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 YO mom of twins (9) and lucky stepmom of 14/17 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets CEA 931
10/18 FOLFOX + Vectibix
12/18 typhlitis (7 days in hospital) but largest met down to 5 cm.
12/18 CEA 4.6
1/18 Resume chemo (#6-8)
3/19 HAI pump placement / colon resection
4/19 Resume chemo (#9-19) FOLFOX (no OX) + Vectibix
5/19 CEA 1.3
7/19 liver resection
10/19 liver resection
1/20 NED! CEA 0.6
3/20 two new liver mets; FOLFIRI (5) and then add Vectibix (5)
8/20 CEA 0.7
Resection next?

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CRguy
Posts: 10230
Joined: Sun Feb 10, 2008 6:00 pm

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
CRguy
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

Mrned82
Posts: 15
Joined: Wed Jan 08, 2020 6:38 am

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....
NO EXPIRATION DATE

Claudine
Posts: 397
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

Punky44
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
T3N2M0
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.

cartech78
Posts: 75
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
23 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. More scans and mop up chemo to follow.
1 month Scan clear! Jun/20 scans still clear. Off chemo since 3/20

AmyG
Posts: 350
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
KRAS/BRAF wild
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!

Siti
Posts: 171
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
Sigmoid | Adenocarcinoma | Grade: G3 | 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 7
6/11/19 CT Scan after 3rd cycle, all nodes have shrunk! Yay!! 20/12/19 Last round of Ox (NED)
1/2020 Maintenance: Cap + Avastin
4/2020 Maintenance: switch to Teysuno (S-1) + Avastin due to bad HFS side effects.

ChiMama
Posts: 33
Joined: Wed Jul 20, 2016 8:41 pm
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
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 nods, watching.
2017/18/19 Scopes: polyps. Scans stable
2019 Endo: hiatal hernia. 2 breast biopsies, benign
5/20 GGN 1.1cm. Biopsy: adenocarcinoma/primary lung cancer. Robotic VATS upper left lobe. 1A
Mama to a rescue Chihuahua

Vana3
Posts: 40
Joined: Tue Aug 13, 2019 11:40 am
Facebook Username: ma

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!
Dx 36 yr, F, 7/19
T4aN2M1 Cea 5.1
5 cm tumor in cecum removed, 17 out of 45 LN
1 cm omental deposit removed
LVI +
Cea post surgery 4.2
MSS, KRAS g12d, Braf WT
MT: 10.9
8/20/19 MRI & PET small liver spots
9/19 - 3/20 FOLFOX
1/02/20 CEA 3.6, 2/15- 4.4 3/15- 4.6, 6/05 4.6
Liver resection 4/15/20
6/20 Ct scan clear
7/20 Cea 8.6
8/20 Cea 12.4, suspicious ovarian cyst
9/20 Hysterectomy SOB (Ovaries and uterus positive for CRC)

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Jack&KatiesMommy
Posts: 621
Joined: Wed Dec 21, 2011 1:08 pm
Location: Columbus, OH

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!!!!

Cynthia
Cynthia
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,

Trying
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

teacher2017
Posts: 268
Joined: Sat Sep 09, 2017 1:18 pm
Facebook Username: Lydia Clark

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!
Lydia
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 -1.5 10/18
Cea -1.2 12/18
Clear scan-12/5/18
Cea - 1.1 3/19
Clear scan- 3/19
Cea - 1.2 6/19
Clear scan-6/2/19
Colonoscopy - 7/19 CLEAR
Cea -1.5 8/19
Clear scan -8/19
Port removal-9/19
Cea -1.2 10/19
Cea -1.1 02/2020
Cea - 1.2 5/2020

DarknessEmbraced
Posts: 3486
Joined: Sat Nov 01, 2014 4:54 pm
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! :)

Mohrfamily
Posts: 266
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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