NEW-Need some positivity here.

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NHMike
Posts: 1810
Joined: Fri Jul 21, 2017 3:43 am

Re: NEW-Need some positivity here.

Postby NHMike » Mon Oct 01, 2018 8:30 pm

teacher2017 wrote:Update- Onc said no chemo needed! She says my Cea is 1.5 and the committee said no chemo at this time. Next scan in December. Surgeon had clear margins and my blood work is good. I’m terrified. Not sure to be happy or waiting for the show to drop. I will now do anything and everything to keep this Ned status. I can at least breathe.


Hopefully you can get to the point where you can relax soon. It's good news for sure.
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; 9/8: 1.8; 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
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

DonutHead
Posts: 48
Joined: Tue Oct 03, 2017 6:45 pm
Facebook Username: mark

Re: NEW-Need some positivity here.

Postby DonutHead » Tue Oct 02, 2018 12:37 am

Relieved! Cannot tell you how happy I am for you, actually did a dance when I read the good news. Not getting the pump was a good decision and it sounds like you are on your way ro recovery! keep it up, keep getting stronger, and never quit or look back!
Male 49 yrs.
09/2017: Colonoscopy 2.2x2 cm lesion - Invasive Adenocarcinoma
- CT - 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 4000mg Xeloda
10/2017: PET - NED
03/2018: PET/CT - NED
09/2018: PET/CT - NED

teacher2017
Posts: 205
Joined: Sat Sep 09, 2017 1:18 pm
Facebook Username: Lydia Clark

Re: NEW-Need some positivity here.

Postby teacher2017 » Fri Oct 12, 2018 8:42 pm

DonutHead wrote:Relieved! Cannot tell you how happy I am for you, actually did a dance when I read the good news. Not getting the pump was a good decision and it sounds like you are on your way ro recovery! keep it up, keep getting stronger, and never quit or look back!


Moving forward and praying everyday! Being normal even for a bit feels so great!!!! Cherishing every moment....
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: 205
Joined: Sat Sep 09, 2017 1:18 pm
Facebook Username: Lydia Clark

Re: NEW-Need some positivity here.

Postby teacher2017 » Fri Oct 26, 2018 8:00 pm

Stage 4 question- will I die with this stupid port in my body? Will it ever come out? Do any stage 4s ever have it removed? I’d imagine I’d be devastated to have to have it put in again... I hate it so much!!!!
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

Cancerclan
Posts: 5
Joined: Tue Oct 23, 2018 11:21 pm

Re: NEW-Need some positivity here.

Postby Cancerclan » Fri Oct 26, 2018 9:26 pm

It is not a death sentence. Your surgeon will examine thetumor plus they will biopsy lymph nodes to see what stage of cancer you have. Colon cancer is beatable. I am three years in remission. After surgery and chemotherapy for Stage 3 colon cancer. Have courage and go forward!

DonutHead
Posts: 48
Joined: Tue Oct 03, 2017 6:45 pm
Facebook Username: mark

Re: NEW-Need some positivity here.

Postby DonutHead » Sat Oct 27, 2018 12:53 am

hi, teacher...

as you know, i had my report removed after the oxy, hated the thing and always reminded me of the ordeal. i now have a lucky horseshoe tattooed on my chest over the area. All of my bloodwork is drawn from my arms as is the dye inserted for scans. it really helped me get a new perspective having it out and i can always have it put back in if necessary (knock on wood).
Male 49 yrs.
09/2017: Colonoscopy 2.2x2 cm lesion - Invasive Adenocarcinoma
- CT - 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 4000mg Xeloda
10/2017: PET - NED
03/2018: PET/CT - NED
09/2018: PET/CT - NED

Gravelyguy
Posts: 61
Joined: Thu Jul 05, 2018 6:03 pm

Re: NEW-Need some positivity here.

Postby Gravelyguy » Sat Oct 27, 2018 5:55 am

I did not like my port either. It rubbed on my seat belt and reminded me every day of what I had been through so I had mine removed 2 months after my first official NED scans and 6 months after my last chemo.

If it comes back, I get a new one. In the mean time it feels great!

Dave
6/17 dx mCRC t3n1m1 very low rectal tumor 2 very small liver Mets

6/17 begin 4 rounds Folfox w/Vectibix
9/17 short course radiation
10/17 rectal and liver resection
11/17-3/18 8 rounds Folfox
6/18 NED!! Takedown
8/28/18 still NED! CEA .8 new low for me
10/18/18 colonoscopy clear

NHMike
Posts: 1810
Joined: Fri Jul 21, 2017 3:43 am

Re: NEW-Need some positivity here.

Postby NHMike » Sat Oct 27, 2018 6:04 pm

Gravelyguy wrote:I did not like my port either. It rubbed on my seat belt and reminded me every day of what I had been through so I had mine removed 2 months after my first official NED scans and 6 months after my last chemo.

If it comes back, I get a new one. In the mean time it feels great!

Dave


How long does it take for the wound to heal up? The ostomy wound has closed up a lot faster.
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; 9/8: 1.8; 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
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

DonutHead
Posts: 48
Joined: Tue Oct 03, 2017 6:45 pm
Facebook Username: mark

Re: NEW-Need some positivity here.

Postby DonutHead » Sun Oct 28, 2018 6:00 am

It took me about 21 days to heal completely once removed. It's been about 7 months since removal and I can still feel the void if you will, in the area where it was initially inserted.
Male 49 yrs.
09/2017: Colonoscopy 2.2x2 cm lesion - Invasive Adenocarcinoma
- CT - 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 4000mg Xeloda
10/2017: PET - NED
03/2018: PET/CT - NED
09/2018: PET/CT - NED

Gravelyguy
Posts: 61
Joined: Thu Jul 05, 2018 6:03 pm

Re: NEW-Need some positivity here.

Postby Gravelyguy » Sun Oct 28, 2018 7:17 am

I was swimming a week later. But I can still feel where it was today. The procedure is not too big of a deal. It was done in the surgeon’s office and I drove home afterwards.

Dave
6/17 dx mCRC t3n1m1 very low rectal tumor 2 very small liver Mets

6/17 begin 4 rounds Folfox w/Vectibix
9/17 short course radiation
10/17 rectal and liver resection
11/17-3/18 8 rounds Folfox
6/18 NED!! Takedown
8/28/18 still NED! CEA .8 new low for me
10/18/18 colonoscopy clear

teacher2017
Posts: 205
Joined: Sat Sep 09, 2017 1:18 pm
Facebook Username: Lydia Clark

Re: NEW-Need some positivity here.

Postby teacher2017 » Mon Oct 29, 2018 7:14 pm

I can only hope that one day i will do it. I think it’s rare that stage 4 peeps remove them.

On a different note, has anyone taken milk thistle after resection? And is having some annoying pain there normal? Like soreness? Just worried when there is any bit of pain anywhere...
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

Lee
Posts: 5732
Joined: Sun Apr 16, 2006 4:09 pm

Re: NEW-Need some positivity here.

Postby Lee » Mon Oct 29, 2018 7:58 pm

There was a person who was diagnosed stage III, had her port removed soon after finishing treatment. At some point, she had a met. When they put the port back in her, she had problems with scar tissue. Did not work. They finally had to take port out and put it in on the other side. She decided that one was not coming out.

I had to wait 2 yrs after finishing treatment before I could get my port removed. I'm sure it's possible to get the port removed after a certain period of time in NEDville. I was not in a hurry to get mine out. My insurance denied it the first time. Onc was going to have a conversation with my insurance company. FOLFOX was experimental when I started getting it. And ports were not a normal item. I took my first infusion in my left hand and had to carry my 5FU on a pole around with me for those next 2 days. I had to sleep on one side of bed out of fear of pulling the needle out of my hand.

If I was the passenger in the car, I put the shoulder strap behind me when I had my port in. I could not handle it across my neck. The word painful was the only way to describe that strap rubbing again my tube inside my neck

Congratulations on your successful surgery, and may you ALWAYS reside in NEDville.

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 - 10 years and counting!


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