The last thing I expected at my MSK appt today

Please feel free to read, share your thoughts, your stories and connect with others!
User avatar
ginabeewell
Posts: 389
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 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

User avatar
CRguy
Posts: 10082
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
12 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

Mrned82
Posts: 13
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: 225
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 radiation 04/18, SBRT 02/19
Resection small intestine 05/18 (no cancer found - Crohn's)
Failed adjuvant Xelox
Folfiri + Avastin since 03/19
6.7 cm left adrenal mass 03/19, 3.67 cm 12/19, surgery scheduled for 02/11
CEA since 03/19: high 58, low 3.2, now 10.2
Scan 03/19: Multiple small lung nodules up to 5mm
Scan 12/19: 2 calcified granulomas, one 1mm stable nodule

Punky44
Posts: 424
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)
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
CEA 4/23: 2.1; 7/24: 1.9; 10/22: 2.6
6/28/19 Reversal and port out
10/22 — CT showed nodules on lungs—possible infection or mets—PET showed nothing—follow up CT on 1/27

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

cartech78
Posts: 72
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!

AmyG
Posts: 327
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...

Siti
Posts: 115
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!!

ChiMama
Posts: 29
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 "inflammatory changes" biopsy: high grade dysplasia
CT & PET fibroid uterus, suspicious area near sigmoid/ovary, liver cysts, lung nodule
6/17/16 Open surgery: hysterectomy, remove 12.5cm sigmoid, 29 LN
T2N0M0 Stage 1 Mod diff adenocarcinoma 5.2cm x 4.1. Clear margins & LN, Gyne benign
Lynch neg
CT 7/27/16 spiculated lung nodule, thyroid nodules, watching.
8/19/16 Scope: 3 polyps
CT 7/17 lung unchanged Scope 8/17 all clear
Mama to a rescue Chihuahua

Vana3
Posts: 24
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!
36 year old mom of 3 kids (10 year old twins and a 6 month old)
T4aN2M1
5 cm tumor in cecum removed with clear margins
17 out of 45 lymph nodes positive
1 cm omental deposit removed
LVI present
Negative for PC
negative for Lynch
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, peri aortic LN suspicious
9/04 second round of folfox with Avastin added on 9/18
1/02/20 CEA 3.6

User avatar
Jack&KatiesMommy
Posts: 604
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 (16) 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): 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, .8, 1.1, 1.1

Trying
Posts: 197
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
Colon cancer stage IV 10 liver mets and peri met April 2018
Down to 2 mets in liver dec 2018
Oct 2019 emergency colostomy

teacher2017
Posts: 260
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 (14, 17)
DX stage 3c - 12/17 LN. T3
8" colon resection 9/22/17
6.1cm tumor
folfox 11/8/17-4/18
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

DarknessEmbraced
Posts: 3399
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! :)


Return to “Colon Talk - Colon cancer (colorectal cancer) support forum”



Who is online

Users browsing this forum: Punky44 and 27 guests