NEW-Need some positivity here.

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hopie
Posts: 90
Joined: Fri Jan 18, 2019 12:15 pm

Re: NEW-Need some positivity here.

Postby hopie » Tue Mar 05, 2019 4:35 pm

We haven't talked before, dear Lydia, but this thread helped me a lot when I first found out about mom's disease. Just wanted to check in and say I hope all is well!
Caregiver to my super-mom (62), diagnosed Dec 2018
Sigmoid colon, Stage IV
G3, Poorly differentiated adenocarcinoma (5,5 x 4 x 1 cm)
T4N2bM1
13 positive out of 23 lymph nodes, largest one 1,8 cm
4(?) mets in liver, located at Segment 3 & 7, largest one 2 cm
LVI & PNI present
Clear surgical margins
MSS, KRAS G13D mutant
Laparoscopic anterior resection, Jan 2019

First chemo 11 Feb 2019 (Folfox). 25/2/19 Folfox + Avastin.

teacher2017
Posts: 253
Joined: Sat Sep 09, 2017 1:18 pm
Facebook Username: Lydia Clark

Re: NEW-Need some positivity here.

Postby teacher2017 » Tue Mar 05, 2019 8:44 pm

hopie wrote:We haven't talked before, dear Lydia, but this thread helped me a lot when I first found out about mom's disease. Just wanted to check in and say I hope all is well!


Thank you!!! Yes!!!! Just got a clear scan! Woohoo!
48 yo female- mom of 2 (12,15)
DX stage 3c - 12/17 LN. T3
8" sigmoid resection 9/22/17
6.1cm tumor
chemo -folfox 11/8/17-4/18
CEA level- 1.4 11/8/17
Colonoscopy- 5/18 - CLEAR!
Cea level- 1.8 6/18
Cea level- 2.1. 8/18
Sh$t has hit the fan- 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!

teacher2017
Posts: 253
Joined: Sat Sep 09, 2017 1:18 pm
Facebook Username: Lydia Clark

Re: NEW-Need some positivity here.

Postby teacher2017 » Tue Mar 05, 2019 8:45 pm

Update- CEA is 1.1!!! Scan is clear!!!!! Woohoo!
48 yo female- mom of 2 (12,15)
DX stage 3c - 12/17 LN. T3
8" sigmoid resection 9/22/17
6.1cm tumor
chemo -folfox 11/8/17-4/18
CEA level- 1.4 11/8/17
Colonoscopy- 5/18 - CLEAR!
Cea level- 1.8 6/18
Cea level- 2.1. 8/18
Sh$t has hit the fan- 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!

Eleda
Posts: 325
Joined: Thu Dec 28, 2017 2:28 am
Facebook Username: adele Morgan
Location: Ireland

Re: NEW-Need some positivity here.

Postby Eleda » Tue Mar 05, 2019 9:40 pm

AMAZBALLS!!!!
A cause to celebrate,,,,
Every victory,,, small or large must be celebrated,,,,

Thanks to cancer we worry about every twinge or ache and pain.............
So today, this is a "Red flag day" !!!!!

ADELE X
SWF, 47
Mom to 3 sons 6/8/12
Dec4th 2017 colonoscopy for minor intermittent rectal bleeding during Summer
CEA 4.4
DX T3 L3C M0 2.5/3 cm above AV.
JAN 3RD started 1650mg Zelda 2xday, with 28 radiation
Did tagamet 800mg daily and 75mg IV VIT C WEEKLY UNTIL SURGERY and
Tumor reduce by 80% 1 LN still remaining
TATME May10th, temp illeostomy
10/07/2018 CEA 3
MMR INTACT
Began FOLFOX July 10th
24/08/2018 Allergic reaction so next infusion lucovorin and 5fu
CEA 4
Second attempt with oxi aug 12th

hopie
Posts: 90
Joined: Fri Jan 18, 2019 12:15 pm

Re: NEW-Need some positivity here.

Postby hopie » Wed Mar 06, 2019 3:18 am

AMAZING! I'm really happy for you!! Let the count down for "de-portation" begin! :)
Caregiver to my super-mom (62), diagnosed Dec 2018
Sigmoid colon, Stage IV
G3, Poorly differentiated adenocarcinoma (5,5 x 4 x 1 cm)
T4N2bM1
13 positive out of 23 lymph nodes, largest one 1,8 cm
4(?) mets in liver, located at Segment 3 & 7, largest one 2 cm
LVI & PNI present
Clear surgical margins
MSS, KRAS G13D mutant
Laparoscopic anterior resection, Jan 2019

First chemo 11 Feb 2019 (Folfox). 25/2/19 Folfox + Avastin.

Beckster
Posts: 392
Joined: Thu Jan 12, 2017 3:01 pm
Location: New Jersey

Re: NEW-Need some positivity here.

Postby Beckster » Wed Mar 06, 2019 6:18 am

Awesome news!!!! :D :D :D
57/F
DX:(CC) 10/19/16
11/4/16- Lap right hemi(cecum)
CEA- Pre Op (1.9), Pre Chemo (2.5)
Type: Adenocarcinoma
Tumor size:3.5 cm x 2.5 x 0.7 cm
Grade: G3 (path) G2 (pre-op)
TNM: T3N0M0/IIA
LN: 0/24
LVI present
Surgical margins: clear
MSS
12/27/2016 - Capeox, anaphylactic reaction to oxaliplatin on first infusion
1/2/17 to 6/9/17- Xeloda monotherapy
6/17,12/17,6/18,12/18 6/19 CT Scan NED :D
CEA- 6/17- 3.6, 9/17- 2.8 12/17-2.8, 3/18-3.1, 6/18-3.0, 9/18 2.8, 12/18 2.5 3/19 3.1 6/19 3.1 9/19 2.6
Clear Colonoscopy 10/17 :D

margiej
Posts: 88
Joined: Sat Apr 14, 2018 8:46 am

Re: NEW-Need some positivity here.

Postby margiej » Wed Mar 06, 2019 7:11 am

Fantastic news! My heart soars with every clear scan I read on here.
Margie
Dx CC 12/2015, age 57 at Dx
Stage IIIb: T3N1b
Adenocarcinoma, sigmoid colon, 2.5 cm - low grade, moderately differentiated
3/6 positive lymph nodes
laparoscopic colectomy 1/20/2016
Capox started 3/4/16 - Six rounds
CT-suspicious lymph 2/22/16
PET scan 2/24/16 clear
CT 6/8/16 clear
Clear Colonoscopy 3/17
CT 10/3/17 clear
CT 10/17/18 clear
CEA 12/17 1.7
5/16 3.8
7/16 1.9
3/17 1.3
10/17 1.2
4/18 1.6
11/18 1.2

User avatar
susie0915
Posts: 937
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: NEW-Need some positivity here.

Postby susie0915 » Wed Mar 06, 2019 8:53 am

Great news. I have a scan coming up in April, my first one since progressing to yearly scans. Starting to get a little nervous, but my CEA was .6 in November so that's good. So happy for you.
58 yrs old Dx @ 55
5/15 DX T3N0MO
6/15 5 wks chemo/rad
7/15 sigmoidoscopy/only scar tissue left
8/15 PET scan NED
9/15 LAR
0/24 nodes
10/15 Bowel blockage. surgery,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 C 4mm lung nod
10/17 Clear pel/abd CT
11/17 CEA<.5
1/18 CT/Lung no change in 4mm nodule
5/18 CEA<.5, clear CT pel/abd/lung nod no change
11/18 CEA .6
5/19 CT NED, CEA <.5
10/19 Clear colonscopy

Milk Tea
Posts: 29
Joined: Wed Feb 13, 2019 1:14 pm

Re: NEW-Need some positivity here.

Postby Milk Tea » Wed Mar 06, 2019 10:36 am

So happy for you. This just made my day!!!
Wife to DH
09/2016: Dx at 50, CC Ascending colon, 10+ liver Mets
KRAS-Mut G12V, MSS, CEA 8
09/2016: Nearly blocked, Emergency colon surgery (LAR)
FOLFOXIRI+Avastin: 6 before and 6 after liver resection
01/2017: Liver resection, open, both lobes, 40% total liver cut, tumors either cut out or microwave ablation burn, all tumors are out
02/2017-01/2019 : Clean CT every 3-4 months, CEA between 2-3
06/2017-Present: Maintenance Chemo: Xeloda + Avastin

Be_The_Sunshine
Posts: 14
Joined: Wed Mar 06, 2019 10:23 am
Location: Glasgow, Scotland, UK

Re: NEW-Need some positivity here.

Postby Be_The_Sunshine » Wed Mar 06, 2019 10:56 am

Thank You WEISSSOCCERMOM

I have joined this forum today and read your reply below from a previous query.

I found it VERY helpful and exactly detailed in a way to better help prepare and written with sensitivity and encouragement.

I'm an information type of person, not so I create anxiety but so I can prevent it, by knowing as much information on a procedure/process ahead so it's not so much of a shock if or should something happen.

Again thank you for this post. Much Appreciated :D

weisssoccermom wrote:First of all, welcome to our site. I am sorry you had to find us but hopefully you'll find a wealth of information here that can help you.

Now, you didn't say where exactly your mass was located so it is difficult to give you some specific information. The reason is simple. IF you have a mass in the rectum or a mass that is located in an area that is classified as 'rectal cancer' your treatment will be different and there will be more testing before you begin any treatment. I truly do understand the whole 'I want it out NOW' line of thinking....I believe we all felt that way when we were diagnosed. Heck, when I woke up from my first colonoscopy that diagnosed my tumor, I wanted the surgeon to just 'come on down' and operate then and there. I figured that I had had the prep and was ready to GO. Fortunately, that didn't happen and I am now glad that it didn't. I'm 11 years out and I shudder when I think of how naive I was back then. I can't imagine what might have happened had my way (after waking up) had been what my surgeon had done.

IF you have a GP that you have a good relationship with, see him/her and ask him/her to order a CEA test for you. It is a simple blood test that tests for a protein that tumors often give off. However, please note that not all tumors express this protein so seeing a 'normal' value really means nothing. Over the years, there have been many members on this board that have had big or multiple tumors who have NORMAL CEA levels and then there are others with even just one small tumor who have elevated levels. This test is good for the future....to indicate if you may be having a recurrence. Before ANY treatment (surgery, chemo, radiation, etc.) you should have this test done to give you a baseline number. I would also suggest that if you have a GP that you trust/like, make sure that he/she is cc'd on each and every report. Sometimes, facilities don't want to give the patient a copy of the test...but if your GP is copied on every test/procedure, you can always get the copy from him/her.

My next piece of advice is to get to the center that did your colonoscopy and get a copy of the report for your scope. Next get a copy of the pathology report. Get a three ring binder...complete with dividers and start a section for pathology reports, CT reports, colonoscopy reports and blood work. You will be having more of these tests (and others) from now on. Don't rely on the doctor to give you the results....GET A HARD COPY OF EVERYTHING! Don't forget your CT report as well and whenever you get blood work done, get copies of those tests as well. From now on, you will likely be having blood drawn on a regular basis.....CBC, CHEM panels, CEA and other tests.

Now, if you do have rectal cancer, be prepared for more tests. You will likely get an endorectal ultrasound (also called a transrectal ultrasound) to help determine the depth of the tumor into the rectal wall and to better see the local lymph nodes around the rectum. Again, IF you have rectal cancer, you will likely have chemoradiation and that takes planning/mapping, etc. before treatment begins. Be prepared that if you have rectal cancer, all of these tests and planning could take another 2-4 weeks to accomplish before beginning any treatment. I know that it isn't easy to wait when you just want the dang thing OUT....but it is in your best interest to truly know what you are dealing with before starting any treatment.

If you have colon cancer, your doctor will still likely do blood work (make sure to get that baseline CEA regardless of colon or rectal cancer) before scheduling any surgery. Unless there is an imminent life threatening emergency, surgery isn't going to happen tomorrow...even with colon cancer. It may take another week....it may take another two....it's hard to say. Your doctors want to know that everything is planned well before they just go in and cut out the tumor.

As for whether or not you are going to need chemo....no one can tell you that until you have more testing (rectal cancer) or surgery (colon cancer). GENERALLY, those stage II and above generally do some form of chemo ....so just be prepared. I know its scary to hear that....its something that none of us want to hear but.....you have to be prepared for the likelihood that yes, chemo is a good probability for most cancer patients. One thing to remember.....not all chemos are the same. You've likely read stories or seen those made for TV movies about people with breast cancer and yes, the chemo for that disease tends to be harsher than the chemos for colorectal cancer. Don't fret about something now that you have no control over.

Right now.....take a breath, relax and take this one step at a time.
Can't find the Sunshine, Be the Sunshine

2010 = Age 37, Stage 3 Breast Cancer called (Her2+) L mastectomy with 18mths of IV chemo/Herceptin & 5years of meds.

FEB 2019 = colonoscopy Age 46[
* Distal Sigmoid 1 x Pedunculated Polyp (1p) 10mm (results are 15th march 2019 - benign)

* Feb 2019 Rectum 1 x Sessile (Flat) polyp (IIc) 12mm - Removed 15th Mar 2019 awaiting full results but do know this from biopsy - TVA with low grade dysplasia' and (Is, pit type IIIL )

Caat55
Posts: 671
Joined: Sat Dec 23, 2017 6:01 pm

Re: NEW-Need some positivity here.

Postby Caat55 » Wed Mar 06, 2019 11:30 am

Good for you and your family :D
Susan
55 y.o. Female
Dx 9/26/17 RC Stage 3
Completed 33 rad. tx, xeolda 12/8/17
MRI and PET 1/18 sign. regression
Surgery 1/31/18 Ileostomy, clean margins, no lymph node involved
Port 3/1/2018
Oxaliplatin and Xeloda start 3/22/18
Last Oxaliplatin 7/5/18, 5 rounds
CT NED 9/2018
PET NED 12/18
Clear Colonoscopy 2/19

User avatar
LPL
Posts: 650
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

Re: NEW-Need some positivity here.

Postby LPL » Wed Mar 06, 2019 2:56 pm

teacher2017 wrote:Update- CEA is 1.1!!! Scan is clear!!!!! Woohoo!

Hurray !!!! Wonderful news :D
Celebrate big time :!:
DH @ 65 DX 4/11/16 CC recto-sigmoid junction
Adenocarcenoma pt 35x15x9mm G3(biopsi) G1(surgical)
Mets 3 Liver resectable
T4aN1bM1a Stage IVa 2/9 LN
MSS, KRAS-mut G13D
CEA & CA19-9: 5/18 2.5 78 8/17 1.4 48 2/14/17 1.8 29
4 Folfox 6/15-7/30 (b4 liver surgery) 8 after
CT: 8/8 no change 3/27/17 NED->Jan-19 mets to lung
:!: Steroid induced hyperglycemia dx after 3chemo
Surgeries 2016: 3/18 Emergency colostomy
5/23 Primary+gallbl+stoma reversal+port 9/1 Liver mets
RFA 2019: Feb lung met

teacher2017
Posts: 253
Joined: Sat Sep 09, 2017 1:18 pm
Facebook Username: Lydia Clark

Re: NEW-Need some positivity here.

Postby teacher2017 » Wed Mar 06, 2019 9:28 pm

hopie wrote:AMAZING! I'm really happy for you!! Let the count down for "de-portation" begin! :)


Omg! When is that???? I want it out! Oh to feel completely normal-it May never happen....but to have the port out for a long time would be great! Stage 4 makes it very iffy.
48 yo female- mom of 2 (12,15)
DX stage 3c - 12/17 LN. T3
8" sigmoid resection 9/22/17
6.1cm tumor
chemo -folfox 11/8/17-4/18
CEA level- 1.4 11/8/17
Colonoscopy- 5/18 - CLEAR!
Cea level- 1.8 6/18
Cea level- 2.1. 8/18
Sh$t has hit the fan- 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!

hopie
Posts: 90
Joined: Fri Jan 18, 2019 12:15 pm

Re: NEW-Need some positivity here.

Postby hopie » Thu Mar 07, 2019 1:53 am

teacher2017 wrote:
Omg! When is that???? I want it out! Oh to feel completely normal-it May never happen....but to have the port out for a long time would be great! Stage 4 makes it very iffy.


I’ve seen people who have forgotten about the location of their mets, their mutations, and what not after they reach NED for a long time. Not normal per se, but I’ll take it!
Caregiver to my super-mom (62), diagnosed Dec 2018
Sigmoid colon, Stage IV
G3, Poorly differentiated adenocarcinoma (5,5 x 4 x 1 cm)
T4N2bM1
13 positive out of 23 lymph nodes, largest one 1,8 cm
4(?) mets in liver, located at Segment 3 & 7, largest one 2 cm
LVI & PNI present
Clear surgical margins
MSS, KRAS G13D mutant
Laparoscopic anterior resection, Jan 2019

First chemo 11 Feb 2019 (Folfox). 25/2/19 Folfox + Avastin.

Punky44
Posts: 360
Joined: Mon Oct 01, 2018 4:29 pm

Re: NEW-Need some positivity here.

Postby Punky44 » Thu Mar 07, 2019 2:48 pm

Woohoo! Congratulations!
Caregiver to my amazing mom (68)
10/1/18 DX with rectal cancer; CEA 17 at diagnosis
MRI/CT/PET puts staging at 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
6/28/19 Reversal and port out

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


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