NEW-Need some positivity here.

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Caat55
Posts: 527
Joined: Sat Dec 23, 2017 6:01 pm

Re: NEW-Need some positivity here.

Postby Caat55 » Wed May 30, 2018 10:18 pm

Enjoying the beginning of my summer break without a round of oxi. I am so bummed the last two does will occupy summer, glad to have this four week window. Hope you find a comfortable headspace, it's scary isn't it?
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

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susie0915
Posts: 847
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: NEW-Need some positivity here.

Postby susie0915 » Thu May 31, 2018 8:00 am

So glad your colonoscopy was clear. I had mine in Sept, 2016 and the doctor said don't need another for 3 years. The screening tests do provide us with alot of anxiety. I just finished my 6 month bloodwork and scan. Even without lymph node involvement, the anxiety is still there every time testing time comes. I will be NED 3 years in September and I almost get panic attacks when it comes time for scans. I still think about my diagnosis everyday. The lingering side effects of treatment don't help. Mild neuropathy and digestive issues. But, I keep telling myself that life is good and I everyday I get up is a good day. Wishing you well on your bloodwork and upcoming scans.
58 yrs old Dx @ 55
5/15 DX T3N0MO
6/15 5 wks chemo/rad
7/15 sigmoid/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 Clear CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 CT 4mm lung nod
7/17 no change 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

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Shana
Posts: 401
Joined: Sun Jul 30, 2017 9:45 pm
Location: Sonoma, CA

Re: NEW-Need some positivity here.

Postby Shana » Thu May 31, 2018 8:43 am

So happy to hear your good news! I understand the concern for closer monitoring and I'd feel the same way. Maybe you can push to have it sooner, perhaps after 2 years for your peace of mind.

Enjpy your summer! Doing happy dance for you!!!

Shana
DX - 12/16
MSS - KRAS wild
Well-differentiated adenocarcinoma at splenic flexure
Stage IV CC with liver mets
5FU - Failed twice - 1/17 and 3/17
Irinotecan + Cetuximab: 8/17
Irinotecan and Erbitux ran it's course. CEA rising
Primary tumor invaded tail of pancreas and spleen. Liver mets major concern
Y-90 radioembolization on 9/17/18, liver enzyymes have dropped. 10 Radiation treatments to primary tumor completed too. CT scan Nov to assess overall situation...

teacher2017
Posts: 199
Joined: Sat Sep 09, 2017 1:18 pm
Facebook Username: Lydia Clark

Re: NEW-Need some positivity here.

Postby teacher2017 » Fri Jun 01, 2018 8:52 pm

More good news! Bloodwork looks good too. Waiting on cea level. But I’m relieved. Now a scan on Aug4th.
48 year old female- mom of 2 (12,15)
DX stage 3c - 12/17 LN. T3
8" sigmoid resection Sept 22 2017
6.1cm tumor size
chemo -folfox 11/8/17-4/18
CEA level- 1.4 11/8/17
Colonoscopy- 5/30/18 - CLEAR!
Cea level- 1.8 6/1/18
Cea level- 2.1. 8/4/18
Sh$t has hit the fan- 8/10/18 Stage 4
1cm met in seg.8 liver
Liver resection- 9/12/18

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Robino1
Posts: 463
Joined: Fri Aug 11, 2017 12:09 pm
Facebook Username: Robin.lawthers
Location: Florida

Re: NEW-Need some positivity here.

Postby Robino1 » Fri Jun 01, 2018 8:55 pm

Fabulous news! :)
At 54 2014 1st colonoscopy colon cancer detect
Colon resect margins clear. No chemo Stage II
2017
Distend abd, pain in intestines.
CT scan seeding & Ascites
Lap diag - cancer on the omentum
CEA 217; 219
FOLFOX started 6/17
CEA 202
8/29/17 CT melting of tumor.
Latest CT scan shows 2 new tumors and return of ascites.
CEA: (2017)9/30 -109; 10/12 -99.1; 11/4 -90.7; 11/30 -70.7; 12/14 -83.4; (2018)1/4 -73.3; 2/1-84.2; 89.2; 89.8; 88.5; 81.8: 93.5; 107; 119
BRAF V600e

Beckster
Posts: 279
Joined: Thu Jan 12, 2017 3:01 pm
Location: New Jersey

Re: NEW-Need some positivity here.

Postby Beckster » Sat Jun 02, 2018 2:32 pm

teacher2017 wrote:More good news! Bloodwork looks good too. Waiting on cea level. But I’m relieved. Now a scan on Aug4th.


Great news! I knew you could do it!!!
57/Female
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 (surgical) 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-discontinued
1/2/17 to 6/9/17- Xeloda monotherapy
6/26/17, 12/12/17, 6/18/18 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
Clear Colonoscopy 10/17 :D

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Shana
Posts: 401
Joined: Sun Jul 30, 2017 9:45 pm
Location: Sonoma, CA

Re: NEW-Need some positivity here.

Postby Shana » Mon Jun 04, 2018 3:57 pm

Yay! Love to hear good news :)
DX - 12/16
MSS - KRAS wild
Well-differentiated adenocarcinoma at splenic flexure
Stage IV CC with liver mets
5FU - Failed twice - 1/17 and 3/17
Irinotecan + Cetuximab: 8/17
Irinotecan and Erbitux ran it's course. CEA rising
Primary tumor invaded tail of pancreas and spleen. Liver mets major concern
Y-90 radioembolization on 9/17/18, liver enzyymes have dropped. 10 Radiation treatments to primary tumor completed too. CT scan Nov to assess overall situation...

teacher2017
Posts: 199
Joined: Sat Sep 09, 2017 1:18 pm
Facebook Username: Lydia Clark

Re: NEW-Need some positivity here.

Postby teacher2017 » Thu Jun 07, 2018 2:34 pm

Cea level went from 1.4 to 1.8. I don’t care! I’m ok for now and I’m happy. I haven’t been happy or relieved in six to eight months. First Scan since surgery is Aug 4th. I have no idea what to eat anymore or what supplements to take. My potassium is always low and I need to lose 50 lbs! It’s time to get fit! Let’s stay positive everyone:)
48 year old female- mom of 2 (12,15)
DX stage 3c - 12/17 LN. T3
8" sigmoid resection Sept 22 2017
6.1cm tumor size
chemo -folfox 11/8/17-4/18
CEA level- 1.4 11/8/17
Colonoscopy- 5/30/18 - CLEAR!
Cea level- 1.8 6/1/18
Cea level- 2.1. 8/4/18
Sh$t has hit the fan- 8/10/18 Stage 4
1cm met in seg.8 liver
Liver resection- 9/12/18

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Robino1
Posts: 463
Joined: Fri Aug 11, 2017 12:09 pm
Facebook Username: Robin.lawthers
Location: Florida

Re: NEW-Need some positivity here.

Postby Robino1 » Thu Jun 07, 2018 6:19 pm

Awesome attitude!

I still remember your first post. You've come a long way baby!!!! And you certainly ROCK! :mrgreen:
At 54 2014 1st colonoscopy colon cancer detect
Colon resect margins clear. No chemo Stage II
2017
Distend abd, pain in intestines.
CT scan seeding & Ascites
Lap diag - cancer on the omentum
CEA 217; 219
FOLFOX started 6/17
CEA 202
8/29/17 CT melting of tumor.
Latest CT scan shows 2 new tumors and return of ascites.
CEA: (2017)9/30 -109; 10/12 -99.1; 11/4 -90.7; 11/30 -70.7; 12/14 -83.4; (2018)1/4 -73.3; 2/1-84.2; 89.2; 89.8; 88.5; 81.8: 93.5; 107; 119
BRAF V600e

teacher2017
Posts: 199
Joined: Sat Sep 09, 2017 1:18 pm
Facebook Username: Lydia Clark

Re: NEW-Need some positivity here.

Postby teacher2017 » Sat Jun 09, 2018 7:15 am

Robino1 wrote:Awesome attitude!

I still remember your first post. You've come a long way baby!!!! And you certainly ROCK! :mrgreen:


Thank you!
48 year old female- mom of 2 (12,15)
DX stage 3c - 12/17 LN. T3
8" sigmoid resection Sept 22 2017
6.1cm tumor size
chemo -folfox 11/8/17-4/18
CEA level- 1.4 11/8/17
Colonoscopy- 5/30/18 - CLEAR!
Cea level- 1.8 6/1/18
Cea level- 2.1. 8/4/18
Sh$t has hit the fan- 8/10/18 Stage 4
1cm met in seg.8 liver
Liver resection- 9/12/18

DonutHead
Posts: 46
Joined: Tue Oct 03, 2017 6:45 pm
Facebook Username: mark

Re: NEW-Need some positivity here.

Postby DonutHead » Sat Jun 23, 2018 10:07 am

Hey guys,

Well, made it through treatment and feeling stronger, better. NED following scans in late March. We moved overseas with the blessings of my oncologist and his belief this was all behind me. I am scheuled for my first 1 yr colonscopy and my first 6 month follow up PET/CT in mid-September.

However....3 months almost to the day after ending treatment, I have observed what appears to be blood in my stool...kind of what it looked like before my diagnosis and forced me to get checked in the first place. It's been 3 days consecutively now. streaks. now i have been eating tomatoes and strawberries...my diet is Mediterranean. the only thing is i recently as of a week ago started eating oatmeal again in the mornings or bran cereals for fiber.

I did send a note to my doctor on the above with a photograph of what I am seeing, but it is the weekend and i am sure i may not hear anything until early next week. My question is - with all of the research i have conducted and not found any comfort - is it likely the cancer has returned and what I am seeing is a bleeding tumor in my colon? after just 3 months of ending treatment?

jind of numb right now and somewhat afraid....
Male 49 yrs.
09/10/2017: Colonoscopy 2.2x2 cm lesion - Invasive Adenocarcinoma - NOT Genetic
- CT - No Mets - Very slightly enlarged LN; CEA 2.0
- LAP Rectosigmoid - 8' and 25 LNs removed
- Biopsy - 1/25 LN slight molecular invasion
- Stage IIIa - T3 N1 M0
- Chemo: 3 of 8 rds Ox; 8 rds of 4000mg Xeloda
10/2017: PET - NED
03/2018: PET/CT - NED
09/2018: PET/CT - NED

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Shana
Posts: 401
Joined: Sun Jul 30, 2017 9:45 pm
Location: Sonoma, CA

Re: NEW-Need some positivity here.

Postby Shana » Sat Jun 23, 2018 10:20 am

First of all congrats on NED status, that's awesome!

I hope you hear back from your oncologist soon. I know recurrence is always at the back of every cancer patient's mind so fear is normal.

Sending you positive thoughts that this is absolutely nothing!
DX - 12/16
MSS - KRAS wild
Well-differentiated adenocarcinoma at splenic flexure
Stage IV CC with liver mets
5FU - Failed twice - 1/17 and 3/17
Irinotecan + Cetuximab: 8/17
Irinotecan and Erbitux ran it's course. CEA rising
Primary tumor invaded tail of pancreas and spleen. Liver mets major concern
Y-90 radioembolization on 9/17/18, liver enzyymes have dropped. 10 Radiation treatments to primary tumor completed too. CT scan Nov to assess overall situation...

teacher2017
Posts: 199
Joined: Sat Sep 09, 2017 1:18 pm
Facebook Username: Lydia Clark

Re: NEW-Need some positivity here.

Postby teacher2017 » Tue Jul 03, 2018 8:13 pm

DonutHead wrote:Hey guys,

Well, made it through treatment and feeling stronger, better. NED following scans in late March. We moved overseas with the blessings of my oncologist and his belief this was all behind me. I am scheuled for my first 1 yr colonscopy and my first 6 month follow up PET/CT in mid-September.

However....3 months almost to the day after ending treatment, I have observed what appears to be blood in my stool...kind of what it looked like before my diagnosis and forced me to get checked in the first place. It's been 3 days consecutively now. streaks. now i have been eating tomatoes and strawberries...my diet is Mediterranean. the only thing is i recently as of a week ago started eating oatmeal again in the mornings or bran cereals for fiber.

I did send a note to my doctor on the above with a photograph of what I am seeing, but it is the weekend and i am sure i may not hear anything until early next week. My question is - with all of the research i have conducted and not found any comfort - is it likely the cancer has returned and what I am seeing is a bleeding tumor in my colon? after just 3 months of ending treatment?

jind of numb right now and somewhat afraid....



I sometimes have the same issues but it could very well be food related. Do the Metamucil thing and see if there is a change. Could be hemmoroids too. Breathe.
48 year old female- mom of 2 (12,15)
DX stage 3c - 12/17 LN. T3
8" sigmoid resection Sept 22 2017
6.1cm tumor size
chemo -folfox 11/8/17-4/18
CEA level- 1.4 11/8/17
Colonoscopy- 5/30/18 - CLEAR!
Cea level- 1.8 6/1/18
Cea level- 2.1. 8/4/18
Sh$t has hit the fan- 8/10/18 Stage 4
1cm met in seg.8 liver
Liver resection- 9/12/18

teacher2017
Posts: 199
Joined: Sat Sep 09, 2017 1:18 pm
Facebook Username: Lydia Clark

Re: NEW-Need some positivity here.

Postby teacher2017 » Wed Jul 25, 2018 7:08 pm

Can anyone clarify the blood work and ctscan schedule? Are the scans once a year? Cea levels every six months? I can’t remember.

Starting to get scanaxiety. Aug 4 is the scan and I meet with the onc on the 7th. I’m sure hoping they will call me as soon as they know the results. I almost don’t want to know! I’m hoping nothing has happened. But every pain or hemorrhoid makes me crazy.
Last edited by teacher2017 on Fri Aug 03, 2018 6:54 am, edited 1 time in total.
48 year old female- mom of 2 (12,15)
DX stage 3c - 12/17 LN. T3
8" sigmoid resection Sept 22 2017
6.1cm tumor size
chemo -folfox 11/8/17-4/18
CEA level- 1.4 11/8/17
Colonoscopy- 5/30/18 - CLEAR!
Cea level- 1.8 6/1/18
Cea level- 2.1. 8/4/18
Sh$t has hit the fan- 8/10/18 Stage 4
1cm met in seg.8 liver
Liver resection- 9/12/18

DonutHead
Posts: 46
Joined: Tue Oct 03, 2017 6:45 pm
Facebook Username: mark

Re: NEW-Need some positivity here.

Postby DonutHead » Wed Jul 25, 2018 10:17 pm

I have my 6 months set of scan and checkup upcoming in mid September. could be every 3 or 6 months for the first 3 years, but my onc thought it overkill for 3 and went with 6. i am certainly with you on the pains and seeing this or that, but hypersensitivity is what i end up concluding everytime. hell, i did not know i had cancer the first time, did not feel anything and a colonoscopy caught it. this ordeal is certainly not easy, everything has changed. however, we need to move on in our lives just as everyone does because, everyone has something, some trialor tribulation they must face daily. you will be fine, more than fine. we have to believe that.
Male 49 yrs.
09/10/2017: Colonoscopy 2.2x2 cm lesion - Invasive Adenocarcinoma - NOT Genetic
- CT - No Mets - Very slightly enlarged LN; CEA 2.0
- LAP Rectosigmoid - 8' and 25 LNs removed
- Biopsy - 1/25 LN slight molecular invasion
- Stage IIIa - T3 N1 M0
- Chemo: 3 of 8 rds Ox; 8 rds of 4000mg Xeloda
10/2017: PET - NED
03/2018: PET/CT - NED
09/2018: PET/CT - NED


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