NEW-Need some positivity here.

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teacher2017
Posts: 191
Joined: Sat Sep 09, 2017 1:18 pm
Facebook Username: Lydia Clark

Re: NEW-Need some positivity here.

Postby teacher2017 » Fri Aug 31, 2018 2:07 pm

So I did my pre survey visit with dr. jarnigan at MSK. He was very knowledgeable and comforting. I told him that I was leaning against the pump and not the open surgery. He was very nice and said it’s a personal decision and did not press me. The nurse said it was basically used for those who were inoperable but some choose to have it put in. No guarantees again she said. So I feel satisfied with my decision. He even said that if it returns, we can always put it in later on. So I feel ok about this decision. My head is clear. I just read a bunch of cases where people gif the pump and it caused an infection and blockage in the bile duct and I can’t do it for now on one liver met. Maybe I’ll regret my decision. But I hope there are some years that I am free of the port and the pump to be less of a cancer patient again.
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

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

Re: NEW-Need some positivity here.

Postby DonutHead » Mon Sep 03, 2018 2:43 pm

Teacher,

None of this is ever easy. Waking up every day before diagnosis was always easy. I cannot speak for everyone, but my days always come with a reminder even if i forget a little or chose to look elsewhere. I am living your same fears, NED or not. My hopes and prayers are with you and your family. Approximately 3 weeks from now i get my verdict and if nothing, then it is on to another 6 months of ups and downs and waiting, freting. There must be a formula for ridding myself of fear and anxiety, but the alternative is worse. All i can do is live another day as best I can until I cannot any longer. Until then, here we are. Get through this and keep moving...forward!
Male 49 yrs.
09/10/2017: Colonoscopy 2.2x2 cm lesion - Invasive Adenocarcinoma - NOT Genetic
- CT - No Mets - Very 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 of 4000mg Xeloda
10/2017: PET - NED
03/2018: PET/CT - NED
09/2018: PET/CT - NED

teacher2017
Posts: 191
Joined: Sat Sep 09, 2017 1:18 pm
Facebook Username: Lydia Clark

Re: NEW-Need some positivity here.

Postby teacher2017 » Sat Sep 08, 2018 7:02 am

I have another thread that I posted this on. So I pasted and copied -

FINALLY spoke to Dr. Z at MSK. She said that the pump was an extreme thing and would need to be checked/filled by her every two weeks. A commitment. She said that she thought it wasn’t necessary at this time and it could always be revisited. She asked if the surgeon pushed it. I said he did not and he didn’t give me any pushback after I told him that I’d like to do this laproscopically. I am very pleased that I spoke to her. She also said that after the procedure she will look at the pathology report and decide if chemo is need or not. I think this was the right move for me. She was very supportive of the decision not to do this to my body at this time. So Sept. 12 this little devil is being evicted. Let’s hope the surgeon sees no other cancer and this is soon a bad memory.
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

Beckster
Posts: 269
Joined: Thu Jan 12, 2017 3:01 pm
Location: New Jersey

Re: NEW-Need some positivity here.

Postby Beckster » Sat Sep 08, 2018 7:33 am

This makes my day!!! Sending you positive vibes...let us know how you make out!
57/Female
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 (surgical) G2 (pre-op)
TNM: T3N0M0/IIA
LN: 0/24
LVI present
Surgical margins: clear
MSS
12/27/2016 - Capeox, anaphylactic reaction to oxaliplatin on first infusion-discontinued
1/2/17 to 6/9/17- Xeloda monotherapy
6/26/17, 12/12/17, 6/18/18 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
Clear Colonoscopy 10/17 :D

teacher2017
Posts: 191
Joined: Sat Sep 09, 2017 1:18 pm
Facebook Username: Lydia Clark

Re: NEW-Need some positivity here.

Postby teacher2017 » Thu Sep 13, 2018 7:32 pm

Update- resection complete. Surgeon said it was uneventful. It went exactly as planned. They did an internal liver ultrasound d and it was clean. No idea what pathology will say or how they determine chemo. I can control exercise, diet, and attitude. That’s about it. Stage 4 sucks and there are tons of sad stories out there. Today I’m not one of them. Maybe one day. But not today.
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

heiders33
Posts: 277
Joined: Sat Nov 04, 2017 11:08 am

Re: NEW-Need some positivity here.

Postby heiders33 » Thu Sep 13, 2018 7:55 pm

Great news! Hope the recovery goes well.
36 year-old female
May 2017: Dx rectal cancer at T3N2M0
MSS, KRAS
June-July 2017: 28 days of chemo/radiation
September 2017: laparoscopic LAR surgery with loop ileostomy
October 2017 - February 2018: XELOX six rounds
March 2018: reversal
April 2018: CEA 2.1, all blood counts normal
May 2018: CT scan showed liver spot
August 2018: Abnormal PET, CEA 2.4
September 2018: liver resection with HAI pump

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

Re: NEW-Need some positivity here.

Postby DonutHead » Sat Sep 15, 2018 11:54 am

Such good news! I have been bummed over your last posts and stayed away from the site a bit since i have my first 6 month scans next week. Heading back from Saudi Arabia tomorrow and have a PET/CT scan on Wednesday, follow- up with my Oncologist on Thursday, and a one-year follow-up Colonoscopy on Friday. Bing, Bang, Boom. Not terrified, but concerned. It is an everyday handshake with reality that I hope fades over time. Just want it over with. Wish me luck!
Male 49 yrs.
09/10/2017: Colonoscopy 2.2x2 cm lesion - Invasive Adenocarcinoma - NOT Genetic
- CT - No Mets - Very 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 of 4000mg Xeloda
10/2017: PET - NED
03/2018: PET/CT - NED
09/2018: PET/CT - NED

teacher2017
Posts: 191
Joined: Sat Sep 09, 2017 1:18 pm
Facebook Username: Lydia Clark

Re: NEW-Need some positivity here.

Postby teacher2017 » Sun Sep 16, 2018 12:27 pm

DonutHead wrote:Such good news! I have been bummed over your last posts and stayed away from the site a bit since i have my first 6 month scans next week. Heading back from Saudi Arabia tomorrow and have a PET/CT scan on Wednesday, follow- up with my Oncologist on Thursday, and a one-year follow-up Colonoscopy on Friday. Bing, Bang, Boom. Not terrified, but concerned. It is an everyday handshake with reality that I hope fades over time. Just want it over with. Wish me luck!


You will be fine! Please post that you are NED when you get the all clear! I am ok! Sore but mobile and hoping this is all done now. I look like I was in a fight! I will update you as to the pathology etc....wondering how they determine chemo from this. Were LNs involved? No idea. All the surgeon said was it went as planned- they couldn’t see anything. Whatever that means. Hang in there, Donuthead! You’ve got this!!!
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

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

Re: NEW-Need some positivity here.

Postby DonutHead » Thu Sep 20, 2018 4:37 am

what a nerve wracking experience, more so than actual diagnosis. so i couldn't bear it, the anxiety afterwards. my wife called the dr's office from Riyadh to pester them about the results of my PET/CT scan today....and I am still NED. nothing.

it's a wave of euphoria to say the least, but it lasted only a short time because the reality is it can come back at any time. i have another 6 months is how i look at it. of course, this makes things a little bit easier, but it's not like i could just forget and move on. This will always be with me.

Now on to bloodwork today and fasting with a self induced enema this morning for larry longfinger and his camera tomorrow morning. lovely way to start the day :(
Male 49 yrs.
09/10/2017: Colonoscopy 2.2x2 cm lesion - Invasive Adenocarcinoma - NOT Genetic
- CT - No Mets - Very 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 of 4000mg Xeloda
10/2017: PET - NED
03/2018: PET/CT - NED
09/2018: PET/CT - NED

NHMike
Posts: 1700
Joined: Fri Jul 21, 2017 3:43 am

Re: NEW-Need some positivity here.

Postby NHMike » Thu Sep 20, 2018 9:10 am

DonutHead wrote:what a nerve wracking experience, more so than actual diagnosis. so i couldn't bear it, the anxiety afterwards. my wife called the dr's office from Riyadh to pester them about the results of my PET/CT scan today....and I am still NED. nothing.

it's a wave of euphoria to say the least, but it lasted only a short time because the reality is it can come back at any time. i have another 6 months is how i look at it. of course, this makes things a little bit easier, but it's not like i could just forget and move on. This will always be with me.

Now on to bloodwork today and fasting with a self induced enema this morning for larry longfinger and his camera tomorrow morning. lovely way to start the day :(


We all have that fear but I think that the best thing to do is to live every day as best you can.
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

bonnieboo
Posts: 1
Joined: Thu Sep 20, 2018 2:36 pm

Re: NEW-Need some positivity here.

Postby bonnieboo » Thu Sep 20, 2018 3:56 pm

im exaxtly where you are, just a bit further into treatment phase. 48 year old, single mom of three. found a 7 cm mass during colonoscopy. confirmed heriditary (im the first) form. only a few positivw nodes. my tx so far has been 28 rounds of radiation and 5FU chemo pump and now folfox on a pump for 6 months. will take a break to have resection in a few weeks, then finish up chemo. wish i had words of wisdom. wish you diddnt have to be here. but i have been a lerker on this site from day one and this is my first post. just wanted to reach out and let you know i get it. sometimes the “what ifs” are crushing. especially in the middle of the night for me. but i try to look at this as a fast moving train that has an end goal. i try to say “yes” and “what time do you want me there” and just be agreeable in general with my healthcare team. then when i feel crummy and act a bit of a brat they remember thats not my usual MO. my kids are a bit older, but i think once you have spoken to oncolory, radiology and surg you will have a plan and can better speak to them. with mine, they just know they have extra slack to pick up around the house etc. i see the fears they have. they mirror my own. somehow you just know when they need to be talked out or if they (and you) just need a distraction or to blow off steam. day at a time.one hour sometimes. its hard not to peoject, but thats the way im coping. all my best to you.

teacher2017
Posts: 191
Joined: Sat Sep 09, 2017 1:18 pm
Facebook Username: Lydia Clark

Re: NEW-Need some positivity here.

Postby teacher2017 » Sat Sep 22, 2018 6:36 am

Latest dr visit- pathology says it was two tumors instead of one by the surgeon says it really looked like a dumbbell so he figured pathology would see it as two 1cm ea. Clear margins. I’m healing well and I feel fine. Hoping this doesn’t return but I know the reality. 70 percent that this will reoccur in the liver. I will handle whatever comes next tomlive. No idea if I need chemo. I’m assuming yes. But how much? I meet with onc on Friday. Until then, I’m going to pretend I’m cancer free. This lesion was the only issue on my lastedt scan. It’s gone. I think I’m NED for five minutes.
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


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