NEW-Need some positivity here.

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

Re: NEW-Need some positivity here.

Postby teacher2017 » Sun Nov 12, 2017 9:27 pm

Aqx99 wrote:
heiders33 wrote:I have had one cycle so far and found it emotionally draining as well. I was fatigued and nauseous and napped a lot. Mentally I felt like I was never going to get out of the fog I was in. But I did! Now I am gearing up for my next Oxi infusion tomorrow and am determined to not let it take over my life. My mom will be with me all week from out of town, and then on Saturday I will go back with her to spend Thanksgiving with family. We all need something to look forward to! I like the idea of getting out and walking, although I tried that last time and my lip swelled up and my eye twitched a lot due to the cold air. Still, I'm determined to be more active this time, and to take my anti-nausea drugs ahead of the nausea, lol. I haven't been nauseous in years so I couldn't even identify it when it came. It's all about attitude going in, and when you know what to expect it's much more manageable.


I'll be in the chair for an oxaliplatin infusion as well. It will be my sixth, and final, one.


I hope you celebrate!
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

Aqx99
Posts: 403
Joined: Fri Mar 31, 2017 7:28 am
Facebook Username: aqx99
Location: Pfafftown, NC

Re: NEW-Need some positivity here.

Postby Aqx99 » Mon Nov 13, 2017 6:38 am

teacher2017 wrote:
Aqx99 wrote:
heiders33 wrote:I have had one cycle so far and found it emotionally draining as well. I was fatigued and nauseous and napped a lot. Mentally I felt like I was never going to get out of the fog I was in. But I did! Now I am gearing up for my next Oxi infusion tomorrow and am determined to not let it take over my life. My mom will be with me all week from out of town, and then on Saturday I will go back with her to spend Thanksgiving with family. We all need something to look forward to! I like the idea of getting out and walking, although I tried that last time and my lip swelled up and my eye twitched a lot due to the cold air. Still, I'm determined to be more active this time, and to take my anti-nausea drugs ahead of the nausea, lol. I haven't been nauseous in years so I couldn't even identify it when it came. It's all about attitude going in, and when you know what to expect it's much more manageable.


I'll be in the chair for an oxaliplatin infusion as well. It will be my sixth, and final, one.


I hope you celebrate!


My neighbor and her son are going to come pick me up. He wants to see me ring the bell. The real celebration will be in 2 weeks when I take my last chemo pill.
Anne, 40
Stage IIIB Rectal Cancer
T3N1bM0
2/21/17 Dx, Age 39
2/21/17 CEA 0.9
3/23/17 - 5/2/17 Chemoradiation, 28 treatments
6/14/17 Robotic LAR w/temp loop ileostomy, ovaries & fallopian tubes removed, 2/21 lymph nodes positive
7/24/17 - 12/18/17 CapeOx, 6 Cycles
7/24/17 Dx w/ovarian cancer
9/6/17 CA 125 11.1
11/27/17 CEA 2.6
12/5/17 CT NED
12/13/17 CEA 2.9
1/11/18 CA 125 8.6
1/23/18 Reversal
3/21/18 CT enlarged thymus
4/6/18 PET NED
7/10/18 CT NED
7/11/18 CEA 2.6
9/18 Bilateral Prophylactic Mastectomy

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

Re: NEW-Need some positivity here.

Postby teacher2017 » Wed Nov 15, 2017 7:32 pm

I can't wait to be done with treatments. But I already fear the scans and colonoscopy that have to happen. They never saw my whole colon due to the mass in my sigmoid. Every now and then I feel a pain on my right side. I see the ports advantage but hate it all the same. I have decided to remove myself on the Facebook group pages on colon cancer because I can't read the reoccurence cases and sad stories right now. It only makes me worry and my heart rate rises. This is the only site I will stay on for now. I believe in mind over matter. And my brain needs a rest. I hope one day this won't be in the front of my brain every time I wake.
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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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 » Wed Nov 15, 2017 7:41 pm

teacher2017 wrote:I can't wait to be done with treatments. But I already fear the scans and colonoscopy that have to happen. They never saw my whole colon due to the mass in my sigmoid. Every now and then I feel a pain on my right side. I see the ports advantage but hate it all the same. I have decided to remove myself on the Facebook group pages on colon cancer because I can't read the reoccurence cases and sad stories right now. It only makes me worry and my heart rate rises. This is the only site I will stay on for now. I believe in mind over matter. And my brain needs a rest. I hope one day this won't be in the front of my brain every time I wake.


It will get easier. {{{ Hugs }}}

I haven't even looked at Facebook groups. Just going by what I've read here, they really aren't the best places to be. I need positive vibes. I really cannot handle the negative ones. I plan on being a statistic that is in the survival column. :D
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
Joined: Sat Sep 09, 2017 1:18 pm
Facebook Username: Lydia Clark

Re: NEW-Need some positivity here.

Postby teacher2017 » Sat Nov 18, 2017 8:40 am

Robino1 wrote:
teacher2017 wrote:I can't wait to be done with treatments. But I already fear the scans and colonoscopy that have to happen. They never saw my whole colon due to the mass in my sigmoid. Every now and then I feel a pain on my right side. I see the ports advantage but hate it all the same. I have decided to remove myself on the Facebook group pages on colon cancer because I can't read the reoccurence cases and sad stories right now. It only makes me worry and my heart rate rises. This is the only site I will stay on for now. I believe in mind over matter. And my brain needs a rest. I hope one day this won't be in the front of my brain every time I wake.


It will get easier. {{{ Hugs }}}

I haven't even looked at Facebook groups. Just going by what I've read here, they really aren't the best places to be. I need positive vibes. I really cannot handle the negative ones. I plan on being a statistic that is in the survival column. :D


Me too. Attitude is everything. What ifs don't help. Hang in there. We've got this. Others survive this. Why can't we?
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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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 » Sat Nov 18, 2017 7:12 pm

Exactly!!! :D
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

Achilles Torn
Posts: 141
Joined: Fri Dec 16, 2016 2:41 pm

Re: NEW-Need some positivity here.

Postby Achilles Torn » Sat Nov 18, 2017 7:16 pm

Just my 2 cents but the private Facebook group 'Colontown' and the associated neighborhoods for Trial's and Stage 4 patients have been a great resource for knowledge and support. There is a few sad stories, but many more inspirational ones.
Diagnosed as 40 yo Male. BC Canada. Sigmoid Colectomy Dec. 2016
Pathology T3N2bM1 19 of 24 Nodes Positive + tumour deposits
PET scan - Para-Aortic and Iliac Lymph node spread. Stage VI.
Moderately differentiated. MSS. KRAS/BRAF Wild.
Mutations: TP53, ERBB4, MLL3, PDCD1LG2, PRKDC, SMAD3
FOLFOX + Bevacizumab Commenced Jan 9/2017 PET Scan July 2017 - on maintenance 5FU/Bev every 2 weeks.
Progression after Covid19 induced break June 2020. Resume Maintenance chemo of Capecitabine and Bev

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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 » Sat Nov 18, 2017 7:37 pm

I'll check it out when I get back home. Thanks!! :)
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
Joined: Sat Sep 09, 2017 1:18 pm
Facebook Username: Lydia Clark

Re: NEW-Need some positivity here.

Postby teacher2017 » Tue Nov 21, 2017 3:05 pm

Made the absolute mistake of reading some reports on the cancer centers app. Though my ctscan of my chest was clear, it still notes some nodules but at .2 and .3 levels. Should I be worried??? I am alittle freaked out. But these days it happens easily and frequently.
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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juliej
Posts: 3114
Joined: Thu Aug 05, 2010 12:59 pm

Re: NEW-Need some positivity here.

Postby juliej » Tue Nov 21, 2017 4:06 pm

teacher2017 wrote:Made the absolute mistake of reading some reports on the cancer centers app. Though my ctscan of my chest was clear, it still notes some nodules but at .2 and .3 levels. Should I be worried??? I am alittle freaked out. But these days it happens easily and frequently.

Over 90% of pulmonary nodules that are smaller than two centimeters in diameter are benign. The fact is we all have a lot of junk in our lungs that we'd never know about if it wasn't for CT scans. A long ago infection in the lungs, inflammation, fungus from gardening -- there are a ton of things that can cause a benign nodule. The main thing is to see if it changes size, shape, or appearance. If it isn't changing, odds are it's nothing. You can always check with your onc if you need reassurance from a professional.

Try not to be freaked out. Easier said than done, I know! :D

F*ck cancer. You got this! Back to your regularly scheduled programming! :D
Stage IVb, liver/lung mets 8/4/2010
Xelox+Avastin 8/18/10 to 10/21/2011
LAR, liver resec, HAI pump 11/2011
Adjuvant Irinotecan + FUDR
Double lung surgery + ileo reversal 2/2012
Adjuvant FUDR + Xeloda
VATS rt. lung 12/2012 - benign granuloma!
VATS left lung 11/2013
NED 11/22/13 to 12/18/2019, CEA<1

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susie0915
Posts: 945
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: NEW-Need some positivity here.

Postby susie0915 » Tue Nov 21, 2017 4:40 pm

juliej wrote:
teacher2017 wrote:Made the absolute mistake of reading some reports on the cancer centers app. Though my ctscan of my chest was clear, it still notes some nodules but at .2 and .3 levels. Should I be worried??? I am alittle freaked out. But these days it happens easily and frequently.

Over 90% of pulmonary nodules that are smaller than two centimeters in diameter are benign. The fact is we all have a lot of junk in our lungs that we'd never know about if it wasn't for CT scans. A long ago infection in the lungs, inflammation, fungus from gardening -- there are a ton of things that can cause a benign nodule. The main thing is to see if it changes size, shape, or appearance. If it isn't changing, odds are it's nothing. You can always check with your onc if you need reassurance from a professional.

Try not to be freaked out. Easier said than done, I know! :D

F*ck cancer. You got this! Back to your regularly scheduled programming! :D

I have a 4mm lung nodule just being monitored, that hasn't changed. Will have another scan in January. I'm sure if the doctors were concerned they would've mentioned it. There are nodules that the radiologist can determine is most likely cancer by appearance. Other than that, most likely will watch if they are tiny and if there are no changes or disappear in two years will determine it benign. Until the nodule is around 8mm biopsy can't be done or will a pet scan pick it up. Try not to worry. I know it's hard, my oncologist and the pulmonologist believe my nodule is related to the scarring and inflammation in my lungs and not cancer, but will keep monitoring to be sure there are no changes. You will probably have a scan after you complete chemo, and results will be compared to the last scan. I just focus on the fact the my scan says no evidence of disease.
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

justin case
Posts: 4269
Joined: Sun Sep 04, 2011 8:26 am
Location: Katy, Texas

Re: NEW-Need some positivity here.

Postby justin case » Tue Nov 21, 2017 5:11 pm

teacher2017 wrote:Made the absolute mistake of reading some reports on the cancer centers app. Though my ctscan of my chest was clear, it still notes some nodules but at .2 and .3 levels. Should I be worried??? I am alittle freaked out. But these days it happens easily and frequently.

All through, Radiation, Chemo, and surgery, I had a 6 mm. Node.in my lungs. It never took up anything on a PET scan. I still live with it 6 years out .
7/11 diagnosed Stage 2 colon and rectal cancer
chemo/rad
lar/temp ilio
Reversal & port removal
21 round of chemo Folfox 9tx, 5fu 12 tx
Last treatment July 2012

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

Re: NEW-Need some positivity here.

Postby teacher2017 » Thu Nov 23, 2017 9:26 pm

Anyone have to take something to calm down before chemo treatments? I was fine last time. But today all I do is cry. Thanksgiving was hard. Trying not to think it's my last thanksgiving memory. Just wondering if this yo-yo feeling stops.
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

Aqx99
Posts: 403
Joined: Fri Mar 31, 2017 7:28 am
Facebook Username: aqx99
Location: Pfafftown, NC

Re: NEW-Need some positivity here.

Postby Aqx99 » Thu Nov 23, 2017 9:43 pm

teacher2017 wrote:Anyone have to take something to calm down before chemo treatments? I was fine last time. But today all I do is cry. Thanksgiving was hard. Trying not to think it's my last thanksgiving memory. Just wondering if this yo-yo feeling stops.


I have not personally, though I am about to need something if they delay my treatment again. Monday will be my third attempt at getting cycle #6 started. You can ask them for something. Most likely you will get Ativan or something like that. They do it all the time.
Anne, 40
Stage IIIB Rectal Cancer
T3N1bM0
2/21/17 Dx, Age 39
2/21/17 CEA 0.9
3/23/17 - 5/2/17 Chemoradiation, 28 treatments
6/14/17 Robotic LAR w/temp loop ileostomy, ovaries & fallopian tubes removed, 2/21 lymph nodes positive
7/24/17 - 12/18/17 CapeOx, 6 Cycles
7/24/17 Dx w/ovarian cancer
9/6/17 CA 125 11.1
11/27/17 CEA 2.6
12/5/17 CT NED
12/13/17 CEA 2.9
1/11/18 CA 125 8.6
1/23/18 Reversal
3/21/18 CT enlarged thymus
4/6/18 PET NED
7/10/18 CT NED
7/11/18 CEA 2.6
9/18 Bilateral Prophylactic Mastectomy

User avatar
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 Nov 24, 2017 8:28 am

I've come to the realization that these memories that I am making are not for myself but for my loved ones. I don't plan on dying anytime soon but someday I will. Whether it be cancer or something else. I won't be alive to remember these memories.

I'm making the best memories for my family and friends. I hope they will remember me as a strong fighter determined to beat this. I hope to give them memories of me enjoying their company, playing with the kids, loving on the little babies, lots of love and hugs....many hugs.

Laughter, smiles and love. Those are the memories I want to leave them.
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


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