NEW-Need some positivity here.

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NHMike
Posts: 2335
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; 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

DonutHead
Posts: 60
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
03/2019: CT - NED
Still Here!

teacher2017
Posts: 254
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 yo mom of 2 (12,15)
DX stage 3c - 12/17 LN. T3
8" sigmoid resection 9/22/17
6.1cm tumor
folfox 11/8/17-4/18
CEA - 1.4 11/8/17
Colonoscopy- 5/18 - CLEAR!
Cea - 1.8 6/18
Cea - 2.1. 8/18
Sh$t has hit the fan- 8/10/18 Stage 4
1cm met in seg.8 liver
Liver resection- 9/18
Cea level- 1.5 10/18
Cea level- 1.2 12/18
Clear scan- 12/5/18
Cea level- 1.1 3/19
Clear scan- 3/19
Cea level- 1.2 6/19
Clear scan- 6/2/19
Colonoscopy - 7/19 CLEAR
Cea level- 1.5 8/19
Clear scan - 8/19
Port removal- 9/19

teacher2017
Posts: 254
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 yo mom of 2 (12,15)
DX stage 3c - 12/17 LN. T3
8" sigmoid resection 9/22/17
6.1cm tumor
folfox 11/8/17-4/18
CEA - 1.4 11/8/17
Colonoscopy- 5/18 - CLEAR!
Cea - 1.8 6/18
Cea - 2.1. 8/18
Sh$t has hit the fan- 8/10/18 Stage 4
1cm met in seg.8 liver
Liver resection- 9/18
Cea level- 1.5 10/18
Cea level- 1.2 12/18
Clear scan- 12/5/18
Cea level- 1.1 3/19
Clear scan- 3/19
Cea level- 1.2 6/19
Clear scan- 6/2/19
Colonoscopy - 7/19 CLEAR
Cea level- 1.5 8/19
Clear scan - 8/19
Port removal- 9/19

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: 60
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
03/2019: CT - NED
Still Here!

Gravelyguy
Posts: 260
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 mRC t3n1m1 very low rectal tumor 2 liver Mets 1.3 cm and .9 cm

6/17 begin 4 rounds Folfox w/Vectibix
9/17 short course radiation
10/17 rectal and liver resection LAR with coloanal anastomosis (no rectum left)
11/17-3/18 8 rounds Folfox
6/18 still NED!! Takedown
8/28/18 still NED! CEA .8 new low for me
10/18/18 colonoscopy clear
12/12/18 clear scans, CEA .9 still NED!
6/11/19 clear scans CEA 1.0

NHMike
Posts: 2335
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; 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

DonutHead
Posts: 60
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
03/2019: CT - NED
Still Here!

Gravelyguy
Posts: 260
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 mRC t3n1m1 very low rectal tumor 2 liver Mets 1.3 cm and .9 cm

6/17 begin 4 rounds Folfox w/Vectibix
9/17 short course radiation
10/17 rectal and liver resection LAR with coloanal anastomosis (no rectum left)
11/17-3/18 8 rounds Folfox
6/18 still NED!! Takedown
8/28/18 still NED! CEA .8 new low for me
10/18/18 colonoscopy clear
12/12/18 clear scans, CEA .9 still NED!
6/11/19 clear scans CEA 1.0

teacher2017
Posts: 254
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 yo mom of 2 (12,15)
DX stage 3c - 12/17 LN. T3
8" sigmoid resection 9/22/17
6.1cm tumor
folfox 11/8/17-4/18
CEA - 1.4 11/8/17
Colonoscopy- 5/18 - CLEAR!
Cea - 1.8 6/18
Cea - 2.1. 8/18
Sh$t has hit the fan- 8/10/18 Stage 4
1cm met in seg.8 liver
Liver resection- 9/18
Cea level- 1.5 10/18
Cea level- 1.2 12/18
Clear scan- 12/5/18
Cea level- 1.1 3/19
Clear scan- 3/19
Cea level- 1.2 6/19
Clear scan- 6/2/19
Colonoscopy - 7/19 CLEAR
Cea level- 1.5 8/19
Clear scan - 8/19
Port removal- 9/19

Lee
Posts: 5974
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!

teacher2017
Posts: 254
Joined: Sat Sep 09, 2017 1:18 pm
Facebook Username: Lydia Clark

Re: NEW-Need some positivity here.

Postby teacher2017 » Sun Nov 25, 2018 6:50 pm

Ok folks-
Scan on Dec. 1 and results on Dec. 4. The scan fear is real. I feel fine but get some aches and pains by the liver and back and sometimes lower. Not sure what it is but of course, I’m making myself nuts. Praying I’m NED. Thoughts have made me crazed- worrying I’ll need more surgery or folfiri which may make me go bald. Worried that this will affect my job and anticipated retirement at 55...which I may never see. Just think this whole thing is a nightmare. The most vicious one you can muster. Just asking for prayers this week. I’ll keep you all posted. Hoping you are all well and enjoyed your thanksgiving!

L.
48 yo mom of 2 (12,15)
DX stage 3c - 12/17 LN. T3
8" sigmoid resection 9/22/17
6.1cm tumor
folfox 11/8/17-4/18
CEA - 1.4 11/8/17
Colonoscopy- 5/18 - CLEAR!
Cea - 1.8 6/18
Cea - 2.1. 8/18
Sh$t has hit the fan- 8/10/18 Stage 4
1cm met in seg.8 liver
Liver resection- 9/18
Cea level- 1.5 10/18
Cea level- 1.2 12/18
Clear scan- 12/5/18
Cea level- 1.1 3/19
Clear scan- 3/19
Cea level- 1.2 6/19
Clear scan- 6/2/19
Colonoscopy - 7/19 CLEAR
Cea level- 1.5 8/19
Clear scan - 8/19
Port removal- 9/19

cartech78
Posts: 66
Joined: Thu Oct 25, 2018 6:22 pm

Re: NEW-Need some positivity here.

Postby cartech78 » Sun Nov 25, 2018 6:58 pm

teacher2017 wrote:Ok folks-
Scan on Dec. 1 and results on Dec. 4. The scan fear is real. I feel fine but get some aches and pains by the liver and back and sometimes lower. Not sure what it is but of course, I’m making myself nuts. Praying I’m NED. Thoughts have made me crazed- worrying I’ll need more surgery or folfiri which may make me go bald. Worried that this will affect my job and anticipated retirement at 55...which I may never see. Just think this whole thing is a nightmare. The most vicious one you can muster. Just asking for prayers this week. I’ll keep you all posted. Hoping you are all well and enjoyed your thanksgiving!

L.

I think your gonna be just fine. I wish I had your signature line. Im working torwards it. Besides the odds are even if it did come back it would probably be small enough it could be easily abilated. Wishing you the best.
40 Y/o male
Dx 10/5/18 stage lV CRC
Sg colon T3N1bM1a
Histologic grade-G2
7 inoperable liver mets largest 4.5 cm
Colon resection 10/6/18 clean margins
Starting FolFox on 11/18
2nd opinion at MSK on 12/18
HAI pump installed on 3/6/2018 also found 20 more small tumors on liver scans missed
7/2/2018 MRI and CT show only 2 liver tumors visible and they are shrunk by 3/4
8/5/2018- Pet scan- Dr.Kemeny and Dr.Kingham think ive had complete response from pump. Want me to do a little more chemo to be safe.

DonutHead
Posts: 60
Joined: Tue Oct 03, 2017 6:45 pm
Facebook Username: mark

Re: NEW-Need some positivity here.

Postby DonutHead » Mon Nov 26, 2018 5:16 am

I was thinking if you today and how you were getting along. My first scan was a bit nerve wracking, but fortunately I got through it, as you will. One thing is for certain, we are ALIVE! 30 years ago, maybe not so much. I have learned alot from this ordeal...

not to worry...nothing I can do until I can do something...love those around you, tell them and often...i did before, but bow it is even more important...don't get down, it breeds pessimism...i certainly did after being diagnosed, but life is short and no matter how i go, i want to know that i gave it my everything...be strong, especially when you are not, for those who love you...fake it until you make it essentially.

I get pains too, up near my liver, lower left side where i had my simoid colon removed...but then i think i am more in tune with my body then ever before and that i am feeling what was always there...i just actually notice now.

i have my finger and toes crossed for you, for myselves and others living through this...key word is living. i sometimes forget, even for a second, my ordeal...and it is exhilerating. if it comes back, what can i do other than keep my head up and fight for my family. i do believe deep down that you will be okay, no matter what.

please let me (us) know how your scans go. hope you and your family had a happy thanksgiving and are looking forward to Christmas and ticking off another year in 2019!
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
03/2019: CT - NED
Still Here!


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