For Stage III's: NED for how long now?

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shinny
Posts: 8
Joined: Mon Sep 04, 2017 3:39 am

Re: For Stage III's: NED for how long now?

Postby shinny » Sun May 24, 2020 3:59 am

Hi all,

I just wanted to give an update on my Mam as I know I found it very helpful to see those in the same category as her doing well. She was Stage IIIc.

She will be 3 years NED from Monday (her surgery day!). It was her birthday last weekend and she turned 73.

She was diagnosed at 69 and turned 70 the week before her surgery. All of her scans have been clear and all of her blood tests have been good. Her oncologist only really looks at CEA for tumour markers, however, I get the CA 19-9 added (via her GP) as a result of being a member of this forum (very valuable information!!). That's always been normal, thankfully. We also keep a check on her Vitamin D, her CRP (C-reactive protein), and all of the standard blood tests.

We just had her latest scan in March, right before lockdown here in Ireland. The oncologist gave her the result over the phone (all good thankfully). Appts are a bit all over the place right now with Covid 19 and the fact that our private hospitals (the one my Mam attends is a private hospital) were made public by the government, to deal with the crisis.

Her details:

Dx: 4th May 17
Age diagnosed: 69 (73 now)
Stage: T4/N2/M0 (Stage IIIc) 5/12 nodes positive. Right hemicolectomy surgery 26th May 2017. Lap/Robotic surgery.
Chemo Started 5th July 2017: FOLFOX & Oxaliplatin, 12 rounds (reduced by 20% at round 5)

NHMike
Posts: 2507
Joined: Fri Jul 21, 2017 3:43 am

Re: For Stage III's: NED for how long now?

Postby NHMike » Mon May 25, 2020 8:24 am

That's excellent news. I think that hospitals are opening up for more services in a lot of places as COVID numbers decline. I hope that COVID numbers continue to decline to reduce the stress on cancer patients and survivors.
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

shinny
Posts: 8
Joined: Mon Sep 04, 2017 3:39 am

Re: For Stage III's: NED for how long now?

Postby shinny » Mon May 25, 2020 1:09 pm

Yes, fingers crossed they keep on the downward trend. We had our first "0 new deaths" today in Ireland since March 21st. A great milestone to pass. I hope it stays that way. Our new cases are much lower too and we are gradually opening up more.

Basil
Posts: 270
Joined: Thu Mar 16, 2017 12:33 pm

Re: For Stage III's: NED for how long now?

Postby Basil » Tue May 26, 2020 7:22 pm

I’ve got my three year scans coming in early July. Haven’t thought about cancer too much in a while (a great thing) but you everyone here knows how scan time goes. I was diagnosed March 2017, had a path complete response, surgery, and my last all clear (blood and physical exam only) last December. I’m told if all clear this time chances of a recurrence (after three years) start taking a major nosedive. I feel like I’m on mile 20 of a marathon and just want to power through until the five year mark.
40 y/o male, kids 8&11
Dx 3/16/17, rectal cancer s3,t3,n1,m0
PROSPCT trial (FOLFOX in lieu of chemorad)
FOLFOX 4/5/17 - 6/26/17
LAR 7/31/17, temp ileo
pathological complete response
Adjuvant chemo cancelled (IDEA Study)
Ileo reversed 9/25/17
NED
1 year scans - clear
2 year scans - clear

shinny
Posts: 8
Joined: Mon Sep 04, 2017 3:39 am

Re: For Stage III's: NED for how long now?

Postby shinny » Sat May 30, 2020 10:23 am

Hi Basil, I know what you mean. My Mam is the same, she doesn't really think about it until scan time, and then of course you get that normal anxiety and apprehension.

Good luck for July! My Mam will have a colonoscopy in September and then probably won't have another scan until the end of the year.

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horizon
Posts: 1575
Joined: Tue Apr 12, 2011 10:10 pm

Re: For Stage III's: NED for how long now?

Postby horizon » Mon Jun 01, 2020 12:05 pm

Basil wrote:I’ve got my three year scans coming in early July. Haven’t thought about cancer too much in a while (a great thing) but you everyone here knows how scan time goes. I was diagnosed March 2017, had a path complete response, surgery, and my last all clear (blood and physical exam only) last December. I’m told if all clear this time chances of a recurrence (after three years) start taking a major nosedive. I feel like I’m on mile 20 of a marathon and just want to power through until the five year mark.


Sending you good luck for your results!
I'm just a dude who still can't believe he had a resection and went through chemo (currently 9 years NED). Is this real life?

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wwroam
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Facebook Username: Wayne Whitaker
Location: Brisbane, Australia
Contact:

Re: For Stage III's: NED for how long now?

Postby wwroam » Wed Jun 24, 2020 7:12 pm

13 years today since my resection and still free of CC.
Unfortunately my NSCLC is a roller coaster. I've had chemo, chemo+ radiation and was cancer free for about 16 months. Rediagnosed as Stage 4 last year, Alimta+Carboplatin but had to have a break with very low haemoglobin. Restarted with opdivo which was ineffective and am currently on Taxol + Carboplatin which historically been quite effective. Bought a new BMW M2 Competition in late Feb so I am not going quietly. Out with a bang not a whimper.
Stage 3a DX 25/06/07
Folfox complete 30/01/08
7 years NED
Port scheduled for removal 8/02/10 Gone.
PSA .54 No prostate problems
Diagnosed Type 2 Diabetic
SO diagnosed CC Stage IV Liver Mets 23/03/15

Lee
Posts: 6171
Joined: Sun Apr 16, 2006 4:09 pm

Re: For Stage III's: NED for how long now?

Postby Lee » Fri Jun 26, 2020 11:01 am

Hi wwroam,

Congratulation on the 13 year mark, sorry for your other medical issues.

Well I celebrated my 16 year mark a few months back. Still NED!! Finally updated my signature line. Glad to be here, butt this virus scares me. My husband has been working from home for sometime now. Don't think that is going to change anytime soon.

I had a cancer scare this past fall. I had radiation back in 2004 and I know this puts me at a higher risk for bladder cancer. Anyway, I started passing blood. When I told my husband, his first words were avoid Dr. Google. I told him I have every intention of avoiding it until I get a diagnoses. Saw my PCP, yep you have blood in your urine, sent me off to see the Urologist.

Urologist set up a Cat scan. Bladder looks good, but radiologist is picking up something on my left kidney. Next they schedule an MRI, yep there is something there. During the mean time, I see my GYN and tell her what is going on. She says follow up with the Urologist, butt don't be surprised if the bleeding is coming from your vagina. As she put it, she has never seen such bad scar tissue and damage that she see in my vagina. Radiation damage

I had surgery where the Urologist went into my bladder, up a tube (sorry remember the name) and into my kidney where he took a few biopsy. The good news no cancer, still not 100 sure what it was. I will see the Urologist next month where they will run a few test to make sure I have healed up in that area. I will ask him. Glad to still be cancer free.

For those just starting, know that many people are beating this disease. I am one of them. So don't give up the hope.

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 - 16 years and counting!

justin case
Posts: 4266
Joined: Sun Sep 04, 2011 8:26 am
Location: Katy, Texas

Re: For Stage III's: NED for how long now?

Postby justin case » Tue Jun 30, 2020 2:23 pm

Lee wrote:Hi wwroam,

Congratulation on the 13 year mark, sorry for your other medical issues.

Well I celebrated my 16 year mark a few months back. Still NED!! Finally updated my signature line. Glad to be here, butt this virus scares me. My husband has been working from home for sometime now. Don't think that is going to change anytime soon.

I had a cancer scare this past fall. I had radiation back in 2004 and I know this puts me at a higher risk for bladder cancer. Anyway, I started passing blood. When I told my husband, his first words were avoid Dr. Google. I told him I have every intention of avoiding it until I get a diagnoses. Saw my PCP, yep you have blood in your urine, sent me off to see the Urologist.

Urologist set up a Cat scan. Bladder looks good, but radiologist is picking up something on my left kidney. Next they schedule an MRI, yep there is something there. During the mean time, I see my GYN and tell her what is going on. She says follow up with the Urologist, butt don't be surprised if the bleeding is coming from your vagina. As she put it, she has never seen such bad scar tissue and damage that she see in my vagina. Radiation damage

I had surgery where the Urologist went into my bladder, up a tube (sorry remember the name) and into my kidney where he took a few biopsy. The good news no cancer, still not 100 sure what it was. I will see the Urologist next month where they will run a few test to make sure I have healed up in that area. I will ask him. Glad to still be cancer free.

For those just starting, know that many people are beating this disease. I am one of them. So don't give up the hope.

Lee

Radiation damage is something to behold, not. It has altered my existence for 7 years now. I'm still kicking !
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

Lee
Posts: 6171
Joined: Sun Apr 16, 2006 4:09 pm

Re: For Stage III's: NED for how long now?

Postby Lee » Sat Jul 04, 2020 12:55 pm

justin case wrote:Radiation damage is something to behold, not. It has altered my existence for 7 years now. I'm still kicking !


Good to see your post. Be safe, be healthy.

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 - 16 years and counting!

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wwroam
Posts: 762
Joined: Sun Apr 06, 2008 8:13 pm
Facebook Username: Wayne Whitaker
Location: Brisbane, Australia
Contact:

Re: For Stage III's: NED for how long now?

Postby wwroam » Thu Jul 09, 2020 11:10 pm

Had a CT on Monday and had my oncologist appointment on Wed.; Evident tumour shrinkage. Even at 66% dosage the results are favourable and my haemoglobin levels are fairly steady at 93g/L. Looking good.
Just keep plugging away.
Stage 3a DX 25/06/07
Folfox complete 30/01/08
7 years NED
Port scheduled for removal 8/02/10 Gone.
PSA .54 No prostate problems
Diagnosed Type 2 Diabetic
SO diagnosed CC Stage IV Liver Mets 23/03/15

NHMike
Posts: 2507
Joined: Fri Jul 21, 2017 3:43 am

Re: For Stage III's: NED for how long now?

Postby NHMike » Fri Jul 10, 2020 6:01 am

wwroam wrote:Had a CT on Monday and had my oncologist appointment on Wed.; Evident tumour shrinkage. Even at 66% dosage the results are favourable and my haemoglobin levels are fairly steady at 93g/L. Looking good.
Just keep plugging away.


Very nice report.
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

Monique
Posts: 103
Joined: Mon Jun 09, 2008 2:54 am

Re: For Stage III's: NED for how long now?

Postby Monique » Sun Jul 12, 2020 7:50 am

In 2006, I was diagnosed with what is now considered stage IIIC colon cancer. I've been NED for 14 years.

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CRguy
Posts: 10251
Joined: Sun Feb 10, 2008 6:00 pm

Re: For Stage III's: NED for how long now?

Postby CRguy » Sun Jul 12, 2020 1:17 pm

It is great to see you post my friend :D
Thank you for stopping by today with your positive message !

Cheers and Harmony to you
CRguy
Caregiver x 4
Stage IV A rectal cancer/lung met
14 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

crikklekay
Posts: 102
Joined: Thu Feb 15, 2018 9:47 am
Location: Richmond, VA

Re: For Stage III's: NED for how long now?

Postby crikklekay » Mon Jul 13, 2020 7:12 am

My husband’s second scan is coming up next month, if it’s clear he will be at 2 years NED! I’m a nervous wreck over it, I know 2 years is an important milestone. I guess technically he has had no signs of disease since surgery early 2018 but he wasn’t given the title NED until after his clear scan the summer of 2018. It gives me hope seeing people with NED in the double digits! Please send well wishes and good luck our way :)
Caring for DH John
Colon Cancer, Sigmoid colon
Adenocarcinoma
G2, Moderately differentiated w/invasion of visceral peritoneum
Stage IIIC
Positive lymph nodes: 6/22
Chemotherapy: FOLFOX (6)
12/17 ER and emergency surgery
02/18 Hospital w/ MSSA infected port, PICC line inserted, chest CT scan showed septic emboli & blood clots
03/18 Hospital w/ CDIFF
04/18 Chest CT scan clear
06/18 Colonoscopy Clear
08/18 CT Scan Clear, NEMD
06/19 Colonoscopy Clear
08/19 CT Scan Clear
08/20 CT Scan Clear


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