NEW-Need some positivity here.

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JJH
Posts: 408
Joined: Mon Apr 24, 2017 7:26 am

Re: Stress management -- On-line resources from NCCN

Postby JJH » Fri Sep 22, 2017 3:26 am

teacher2017 wrote:So depressed tonight. The waiting for surgery is horrific...

Distress is a normal reaction at this point in time. If you like to read, there are some on-line resources that might help.

Here is the NCCN Distress Thermometer
https://www.nccn.org/patients/resources/life_with_cancer/pdf/nccn_distress_thermometer.pdf

Here is the NCCN Patient Guideline on Distress (46 pages)
https://www.nccn.org/patients/guidelines/distress/index.html
"The darkest hour is just before the dawn" - Thomas Fuller (1650)
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Robino1
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Facebook Username: Robin.lawthers
Location: Florida

Re: NEW-Need some positivity here.

Postby Robino1 » Fri Sep 22, 2017 8:27 am

Thinking about you today. I pray all goes well and await your results.

{{{hugs}}}
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: 275
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Facebook Username: Lydia Clark

Re: NEW-Need some positivity here.

Postby teacher2017 » Fri Sep 22, 2017 9:02 pm

Quick update- I'm still here. Surgery went well in some pain. Tumor was the size of an orange. It was contained too that's what the Dr said. It went no where. He took four lymph nodes. Thoughts?
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 -1.5/1.2
Port removal-9/19
Cea -1.2 10/19
Cea -1.1 02/2020
Cea - 1.2 5/20
Cea-1.1 9/20
Cea- 1.3 2/21
Cea.1.3 5/21

Andrea1976
Posts: 384
Joined: Sun Jan 03, 2016 10:32 am

Re: NEW-Need some positivity here.

Postby Andrea1976 » Fri Sep 22, 2017 10:35 pm

Was it a malignant polyp? How big part of colon was resected? Normally minimum is 12 lymph nodes. But I was told that in younger people and left side there might not be that many lymph nodes.

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JJH
Posts: 408
Joined: Mon Apr 24, 2017 7:26 am

Pathology report

Postby JJH » Sat Sep 23, 2017 12:05 am

teacher2017 wrote:... He took four lymph nodes. Thoughts?

Having less than 12 lymph nodes removed is considered a risk factor. When you finally get you pathology report you can inspect it to see if there are any other risk factors there. Be sure to let us know what the pathology report says.

You can compare your results with the standard pathology report template.
http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=50471&p=388132#p388132

Also, you should ask if they tested the tumor for MSI status (microsatellite instability). There are 2 testing methods that they could use, but neither one is part of the current default pathology report template. To get the tumor tested for MSI status the surgeon may have to request the test specifically. If they don't have the MSI test kits locally in your lab there they might have to send a sample of your tumor out to a specialized lab. It's important to know MSI status because it may have implications for the best type of chemo regimen to use when you are going to have adjuvant chemo.
"The darkest hour is just before the dawn" - Thomas Fuller (1650)
●●●

teacher2017
Posts: 275
Joined: Sat Sep 09, 2017 1:18 pm
Facebook Username: Lydia Clark

Re: NEW-Need some positivity here.

Postby teacher2017 » Sat Sep 23, 2017 3:46 am

What is adjuvant chemo? There were four flamed lymph nodes. I will ask all this today.
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 -1.5/1.2
Port removal-9/19
Cea -1.2 10/19
Cea -1.1 02/2020
Cea - 1.2 5/20
Cea-1.1 9/20
Cea- 1.3 2/21
Cea.1.3 5/21

teacher2017
Posts: 275
Joined: Sat Sep 09, 2017 1:18 pm
Facebook Username: Lydia Clark

Re: NEW-Need some positivity here.

Postby teacher2017 » Sat Sep 23, 2017 3:55 am

Andrea1976 wrote:Was it a malignant polyp? How big part of colon was resected? Normally minimum is 12 lymph nodes. But I was told that in younger people and left side there might not be that many lymph nodes.



He took about a foot. I will ask about the lymph nodes. I was in there for six hours. I'm a little groggy. I'll inquire again.
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 -1.5/1.2
Port removal-9/19
Cea -1.2 10/19
Cea -1.1 02/2020
Cea - 1.2 5/20
Cea-1.1 9/20
Cea- 1.3 2/21
Cea.1.3 5/21

teacher2017
Posts: 275
Joined: Sat Sep 09, 2017 1:18 pm
Facebook Username: Lydia Clark

Re: NEW-Need some positivity here.

Postby teacher2017 » Sat Sep 23, 2017 7:57 am

Spoke to Dr- it was very localized. He took out a large mass with lots of nodes. Pathology will be very specific. He definitely removed the closest ones that were inflamed. He said this was positive news. He was smiling. I don't think I will be ok ever again. Even after that pathology report which could have surprises in it. I'm only allowed in a chair and to the bathroom today.
Last edited by teacher2017 on Sat Sep 23, 2017 8:23 am, edited 1 time in total.
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 -1.5/1.2
Port removal-9/19
Cea -1.2 10/19
Cea -1.1 02/2020
Cea - 1.2 5/20
Cea-1.1 9/20
Cea- 1.3 2/21
Cea.1.3 5/21

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susie0915
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Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: NEW-Need some positivity here.

Postby susie0915 » Sat Sep 23, 2017 8:13 am

Adjuvant chemotherapy is treatment after surgery. preadjuvant is before surgery. I had both. Radiation/chemo to shrink tumor, surgery, then clean up chemo after. I had 0 lymph node involvement and no spread. And even though after radiation all that was left of tumor was scar tissue and pet scan showed no cancer anywhere, pathology of surgery showed minimal residual cancer where tumor was. My oncologist felt 6 rounds of chemo would help ensure no recurrence. I did Xelox which is oxaliplatin given as an infusion every three weeks and two weeks of xeloda pills, then one week off.

You are right you will never be the same, but you will be okay and stronger. You are going to get through this and appreciate life more. The little things will not bother you so much and you will enjoy the gift of an ordinary day. Rest and take care during your recovery.
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 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 pel/abd CT NED
11/17 CEA<.5
1/18 CT/Lung no change in 4mm nodule
5/18 CEA<.5, CT pel/abd/lung NED
11/18 CEA .6
5/19 CT NED, CEA <.5
10/19 Clear colonscopy
11/19 CEA <.5

teacher2017
Posts: 275
Joined: Sat Sep 09, 2017 1:18 pm
Facebook Username: Lydia Clark

Re: NEW-Need some positivity here.

Postby teacher2017 » Sun Sep 24, 2017 7:51 am

Update- hopefully going home tomorrow. Walking and eating today. Not over doing it. Hoping pathology report is good. The wait will be more torture. This resection was no walk in the park. Now low fiber diet...any suggestions?
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 -1.5/1.2
Port removal-9/19
Cea -1.2 10/19
Cea -1.1 02/2020
Cea - 1.2 5/20
Cea-1.1 9/20
Cea- 1.3 2/21
Cea.1.3 5/21

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susie0915
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Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: NEW-Need some positivity here.

Postby susie0915 » Sun Sep 24, 2017 8:17 am

Rest and take one day at a time. The doctor ordered home nursing care for me which I was very helpful. You may want to ask if that is an option. She would come a couple times a week and check my vitals and answer any questions I had. I had a temporary ileostomy and she would help with that as well. It's good you are up and walking around, just don't overdo it. With regard to diet, low fiber to begin with as you heal. It will take time to get your body back to normal but you will get there. It sounds as though you will not need any further treatment which is awesome. Rest and take care of yourself, you will be feeling so much better in the next few weeks.
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 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 pel/abd CT NED
11/17 CEA<.5
1/18 CT/Lung no change in 4mm nodule
5/18 CEA<.5, CT pel/abd/lung NED
11/18 CEA .6
5/19 CT NED, CEA <.5
10/19 Clear colonscopy
11/19 CEA <.5

Lee
Posts: 6207
Joined: Sun Apr 16, 2006 4:09 pm

Re: NEW-Need some positivity here.

Postby Lee » Sun Sep 24, 2017 2:24 pm

teacher2017 wrote: . . . Now low fiber diet...any suggestions?


Glad you made it through surgery, Before you leave the hospital ask for info on low fiber diet. It should include a list of foods safe to eat and foods to avoid. Be sure to keep walking once you are home.

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 16 years and counting!

teacher2017
Posts: 275
Joined: Sat Sep 09, 2017 1:18 pm
Facebook Username: Lydia Clark

Re: NEW-Need some positivity here.

Postby teacher2017 » Sun Sep 24, 2017 4:44 pm

susie0915 wrote:Rest and take one day at a time. The doctor ordered home nursing care for me which I was very helpful. You may want to ask if that is an option. She would come a couple times a week and check my vitals and answer any questions I had. I had a temporary ileostomy and she would help with that as well. It's good you are up and walking around, just don't overdo it. With regard to diet, low fiber to begin with as you heal. It will take time to get your body back to normal but you will get there. It sounds as though you will not need any further treatment which is awesome. Rest and take care of yourself, you will be feeling so much better in the next few weeks.


Yes one day at a time. Learning to appreciate the life I have and stop complaining! I hope you are right about it not needing treatment. I will let you all know. This support group is just the best in the world.
Last edited by teacher2017 on Mon Sep 25, 2017 3:56 am, edited 1 time in total.
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 -1.5/1.2
Port removal-9/19
Cea -1.2 10/19
Cea -1.1 02/2020
Cea - 1.2 5/20
Cea-1.1 9/20
Cea- 1.3 2/21
Cea.1.3 5/21

Beckster
Posts: 438
Joined: Thu Jan 12, 2017 3:01 pm
Location: New Jersey

Re: NEW-Need some positivity here.

Postby Beckster » Sun Sep 24, 2017 5:22 pm

teacher2017 wrote:
susie0915 wrote:Rest and take one day at a time. The doctor ordered home nursing care for me which I was very helpful. You may want to ask if that is an option. She would come a couple times a week and check my vitals and answer any questions I had. I had a temporary ileostomy and she would help with that as well. It's good you are up and walking around, just don't overdo it. With regard to diet, low fiber to begin with as you heal. It will take time to get your body back to normal but you will get there. It sounds as though you will not need any further treatment which is awesome. Rest and take care of yourself, you will be feeling so much better in the next few weeks.


Yes one day at a time. Learning to appreciate the life I have and stop complaining! I hope you are right about it not needing treatment. I will let you all know. This support group is just the bet in the world.



So happy to see the "real" you! If we can deal with kids all day, we can get through this! :lol:
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
TNM: T3N0M0/IIA
LN: 0/24
LVI present
Surgical margins: clear
MSS
12/27/2016 - Capeox, anaphylactic
1/2/17 to 6/9/17- Xeloda
6/17,12/17,6/18,12/18,6/19,12/19,12/20,12/21 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 12/19 2.8 6/20 3.0 12/20 2.7 6/21 2.9,[color=#000000]12/21 2.7[/color]
Clear Colonoscopy 10/17, 11/19,11/21 :D

Kay1982
Posts: 17
Joined: Tue Sep 05, 2017 2:54 pm

Re: NEW-Need some positivity here.

Postby Kay1982 » Mon Sep 25, 2017 12:13 am

Hi Teacher, I'm sorry you find yourself here. Can you please share your symptoms that led you to see a Dr.


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