Not sure how to feel right now

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Hopegirl
Posts: 55
Joined: Wed Nov 08, 2017 10:06 am
Location: Modesto ca

Re: Not sure how to feel right now

Postby Hopegirl » Tue May 01, 2018 1:04 am

xxyford wrote:I know exactly what you are going through.
My dad was diagnosed with rectal cancer in July 2017 and started the mob up chemo(CapeOx) after surgery in late Aug. Every chemo cycle was a nightmare for him, he had to deal with horrible side effect. To make it worse, he caught flu on the 4th chemo cycle and has to stop it. The oncology told us about the research that 3 months of Adjuvant Chemo has a less than 1% higher recurrence rate compared to 6 months of Adjuvant Chemo and he thinks it is ok to stop it here considering the horrible side effect.

I could not stop thinking about this since then. I keep asking myself, are we making the wrong decision? What if he is the 1%? As time pass by, I then realize being anxious doesn't help anything, having a peaceful mind can actually help my family. I try to tell myself positive things and these thoughts really help me calm down:
1. For stage 3 patients, surgery only has 60% cure rate. Maybe we are among the 60%.
2. The effectiveness of chemo is not evenly distributed through each round, missing the later rounds is not really that critical..
3. The new research is based on a large dataset, do believe in science.

It is always easy to say than do, I am still super anxious about the 9-month checkup next week, I am praying for a NED result.

I hope my experience can help, wish we all have only NED results coming.

Yes me too . I hope we are in that 60% . I have my CT scan coming up this week and my anxiety is thru the roof just thinking about it . Pray nothing shows
Diagnosed 10/11/17 at 46 years old . Now 50,4 kids 29, 25, 15, 13
Colon cancer Stage 3b 5/26 lymph nodes positive
Surgery 10/19/17
Cea 0.6 11/15/17
Finished last Xeloda pills 6 cycles 4-10-2018
Did only 3 infusions of oxilaplatin due to bad neuropathy
5-8-2018 Cat Scan clear
5-8-18 Cea 0.6
5-10-18 Port removed
8-7-2018 Cea 0.7
11-13-2018 Clear Scan
11-13-2018 Cea 1.4
12-11-2018 Clean colonoscopy
3-13-2019 Cea 0.8
7-19-2019 Clean scan
7-19-2019 Cea 0.7
1-14-2020 Cea 0.5 :D
Pray for NED Always

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

Re: Not sure how to feel right now

Postby teacher2017 » Wed May 23, 2018 2:52 pm

Maybe this is just wishful thinking but I was told that stage 3 had a better prognosis than 60%. My onc said it was almost 80% after chemo...I also know from some research that the five year data is not very clear. It includes the elderly and those who chose to not do chemo. Not sure if I believe anyone anymore. So I’m making my own statistic. I’ve decided to live. You need to decide to. Move forward. Make plans. LIVE.
Best wishes,
Lydia
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

NHMike
Posts: 2555
Joined: Fri Jul 21, 2017 3:43 am

Re: Not sure how to feel right now

Postby NHMike » Wed May 23, 2018 3:02 pm

The 5-year relative survival rate for people with stage I colon cancer is about 92%.
For people with stage IIA colon cancer, the 5-year relative survival rate is about 87%. For stage IIB cancer, the survival rate is about 63%.
The 5-year relative survival rate for stage IIIA colon cancers is about 89%. For stage IIIB cancers the survival rate is about 69%, and for stage IIIC cancers the survival rate is about 53%.
Colon cancers that have spread to other parts of the body are often harder to treat and tend to have a poorer outlook. Metastatic, or stage IV colon cancers, have a 5-year relative survival rate of about 11%. Still, there are often many treatment options available for people with this stage of cancer.

The 5-year relative survival rate for people with stage I rectal cancer is about 87%.
For people with stage IIA rectal cancer, the 5-year relative survival rate is about 80%. For stage IIB cancer, the survival rate is about 49%.
The 5-year relative survival rate for stage IIIA rectal cancers is about 84%. For stage IIIB cancers the survival rate is about 71%, and for stage IIIC cancers the survival rate is about 58%.
Rectal cancers that have spread to other parts of the body are often harder to treat and tend to have a poorer outlook. Metastatic, or stage IV rectal cancers, have a 5-year relative survival rate of about 12%. Still, there are often many treatment options available for people with this stage of cancer.


https://www.cancer.org/cancer/colon-rec ... rates.html
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT

User avatar
Atoq
Posts: 412
Joined: Wed Oct 25, 2017 9:31 am

Re: Not sure how to feel right now

Postby Atoq » Wed May 23, 2018 3:21 pm

NHMike wrote:
Rectal cancers that have spread to other parts of the body are often harder to treat and tend to have a poorer outlook. Metastatic, or stage IV rectal cancers, have a 5-year relative survival rate of about 12%. Still, there are often many treatment options available for people with this stage of cancer.

:shock:
I knew, I knew, but still... :|

Claudia
1972, 2 kids
Dx rectal cancer 10.2017
T3N2aMX (met left lung 8 mm)
Lynch neg
CEA 1.8
Neoadjuvant chemoradio Xeloda + 25x2 Gy
05.12.17 laparotomic surg. for blockage, colostomy
25.01.18 laparotomic lar, hysterectomy, ileostomy
05.03.18 core needle lung biopsy
07.05.18 CAT scan, lung met 11 mm
04.06.18 ileo reversal
26.06.18 wedge VATS
24.08.18, 31.02.19 CAT scan
12.09.18, 06.02.19 scope, CEA 1.6
19.11.18 scope
20.08.19 CAT, eco
13.09.19 scope, CEA 1.2
18.03.20 CAT, eco, scope, NED
29.11.20 CAT, NED
2023 NED

Hopegirl
Posts: 55
Joined: Wed Nov 08, 2017 10:06 am
Location: Modesto ca

Re: Not sure how to feel right now

Postby Hopegirl » Thu May 24, 2018 1:41 am

I like your post Lydia (teacher2017} :D sigh its been some rough nights always worried and thinking about it. Scared it will come back. I’m trying to be positive. Going on my first vacation since diagnosed to Hawaii. No worries we’re not going where that eruption is at . Feeling scared n nervous because I wont be near my doctors. But kinda excited . Besides exercising 5 days a week what else can I do to stay NED
Diagnosed 10/11/17 at 46 years old . Now 50,4 kids 29, 25, 15, 13
Colon cancer Stage 3b 5/26 lymph nodes positive
Surgery 10/19/17
Cea 0.6 11/15/17
Finished last Xeloda pills 6 cycles 4-10-2018
Did only 3 infusions of oxilaplatin due to bad neuropathy
5-8-2018 Cat Scan clear
5-8-18 Cea 0.6
5-10-18 Port removed
8-7-2018 Cea 0.7
11-13-2018 Clear Scan
11-13-2018 Cea 1.4
12-11-2018 Clean colonoscopy
3-13-2019 Cea 0.8
7-19-2019 Clean scan
7-19-2019 Cea 0.7
1-14-2020 Cea 0.5 :D
Pray for NED Always

DarknessEmbraced
Posts: 3816
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: Not sure how to feel right now

Postby DarknessEmbraced » Thu May 24, 2018 6:54 am

I hope your enjoy your trip!*hugs* It's natural to be scared. Sending positive vibes and hugs your way!*hugs*
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! :)

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

Re: Not sure how to feel right now

Postby teacher2017 » Thu May 24, 2018 12:04 pm

Well that’s just great. I’m totally screwed then. But I heard that it goes up depending on if you had chemo. This is bulshit. You ruined my day.

NHMike wrote: The 5-year relative survival rate for people with stage I colon cancer is about 92%.
For people with stage IIA colon cancer, the 5-year relative survival rate is about 87%. For stage IIB cancer, the survival rate is about 63%.
The 5-year relative survival rate for stage IIIA colon cancers is about 89%. For stage IIIB cancers the survival rate is about 69%, and for stage IIIC cancers the survival rate is about 53%.
Colon cancers that have spread to other parts of the body are often harder to treat and tend to have a poorer outlook. Metastatic, or stage IV colon cancers, have a 5-year relative survival rate of about 11%. Still, there are often many treatment options available for people with this stage of cancer.

The 5-year relative survival rate for people with stage I rectal cancer is about 87%.
For people with stage IIA rectal cancer, the 5-year relative survival rate is about 80%. For stage IIB cancer, the survival rate is about 49%.
The 5-year relative survival rate for stage IIIA rectal cancers is about 84%. For stage IIIB cancers the survival rate is about 71%, and for stage IIIC cancers the survival rate is about 58%.
Rectal cancers that have spread to other parts of the body are often harder to treat and tend to have a poorer outlook. Metastatic, or stage IV rectal cancers, have a 5-year relative survival rate of about 12%. Still, there are often many treatment options available for people with this stage of cancer.


https://www.cancer.org/cancer/colon-rec ... rates.html
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: Not sure how to feel right now

Postby teacher2017 » Thu May 24, 2018 12:05 pm

Eat nuts.

Hopegirl wrote:I like your post Lydia (teacher2017} :D sigh its been some rough nights always worried and thinking about it. Scared it will come back. I’m trying to be positive. Going on my first vacation since diagnosed to Hawaii. No worries we’re not going where that eruption is at . Feeling scared n nervous because I wont be near my doctors. But kinda excited . Besides exercising 5 days a week what else can I do to stay NED
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

User avatar
John72
Posts: 349
Joined: Fri Jan 28, 2011 3:06 am
Location: Los Angeles

Re: Not sure how to feel right now

Postby John72 » Thu May 24, 2018 3:01 pm

Hi Hopegirl,

Had the exact same chemo treatment as you. Oncologist said we’re going to give you the highest possible dose as you are young and can handle it. After three rounds of oxy they had to drastically reduce the dosage as I couldn’t handle it. The oncologist said it was common enough that it is the rule, not the exception, to have to reduce or discontinue oxy.
7/13/10 CC
7/23/10 -3C RC, 7cm,15/33 lymph nodes
8/31/10 5 1/2 weeks of radiation + Xeloda
11/12/10 6 rounds Oxy + Xeloda
3/25/11 Finished chemo
6/15/11 Colostomy reversal followed by infections
9/05/14 Clear CT scan

User avatar
Atoq
Posts: 412
Joined: Wed Oct 25, 2017 9:31 am

Re: Not sure how to feel right now

Postby Atoq » Thu May 24, 2018 3:30 pm

teacher2017 wrote:So I’m making my own statistic. I’ve decided to live. You need to decide to. Move forward. Make plans. LIVE.
Best wishes,
Lydia


Me too from my little 11% :mrgreen:

Claudia
1972, 2 kids
Dx rectal cancer 10.2017
T3N2aMX (met left lung 8 mm)
Lynch neg
CEA 1.8
Neoadjuvant chemoradio Xeloda + 25x2 Gy
05.12.17 laparotomic surg. for blockage, colostomy
25.01.18 laparotomic lar, hysterectomy, ileostomy
05.03.18 core needle lung biopsy
07.05.18 CAT scan, lung met 11 mm
04.06.18 ileo reversal
26.06.18 wedge VATS
24.08.18, 31.02.19 CAT scan
12.09.18, 06.02.19 scope, CEA 1.6
19.11.18 scope
20.08.19 CAT, eco
13.09.19 scope, CEA 1.2
18.03.20 CAT, eco, scope, NED
29.11.20 CAT, NED
2023 NED

User avatar
O Stoma Mia
Posts: 1709
Joined: Sat Jun 22, 2013 6:29 am
Location: On vacation. Off-line for now.

Re: Not sure how to feel right now

Postby O Stoma Mia » Thu May 24, 2018 3:41 pm

Hopegirl wrote:...Besides exercising 5 days a week what else can I do to stay NED

There are three things you need to do:(1) Regular exercise, (2) Healthy, well-balanced meals, and (3) Stress reduction program. You need to develop programs to follow in all three of these areas. All three of them are important. You need to follow all three of these programs consistently for at least 5 years. This is explained very clearly in Dr. David Servan-Schreiber's book, "Anti-Cancer", where he gives many, many footnotes and scientific references in support of this idea.

http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=59711&p=474430#p474430

http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=50272&p=384617#p384617

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

Re: Not sure how to feel right now

Postby Shana » Thu May 24, 2018 3:50 pm

Atoq wrote:
teacher2017 wrote:So I’m making my own statistic. I’ve decided to live. You need to decide to. Move forward. Make plans. LIVE.
Best wishes,
Lydia


Me too from my little 11% :mrgreen:

Claudia


I'm jumping on your 11% wagon Claudia! Someone has to survive to make those stats and hopefully with developing treatments we will be around to see those Stage IV survival numbers continue to grow. I like Lydia's attitude too! :D

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...


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