Stage 3, likelihood of recurrence after resection & chemotherapy

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Basil
Posts: 274
Joined: Thu Mar 16, 2017 12:33 pm

Re: Stage 3, likelihood of recurrence after resection & chemotherapy

Postby Basil » Sat Jan 09, 2021 9:25 pm

My signature tells my story. Stage 3 and will be released from surveillance at MDAnderson if/when my summer scans come back clean.
40 y/o male (now 44), kids 10 & 13.
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
3 year scans - clear
4 year scans - clear

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horizon
Posts: 1642
Joined: Tue Apr 12, 2011 10:10 pm

Re: Stage 3, likelihood of recurrence after resection & chemotherapy

Postby horizon » Tue Jan 12, 2021 4:43 pm

Basil wrote:My signature tells my story. Stage 3 and will be released from surveillance at MDAnderson if/when my summer scans come back clean.


Got my fingers crossed for you!
I'm just a dude who still can't believe he had a resection and went through chemo (currently 10 years NED). Is this real life?

LivinginHope
Posts: 40
Joined: Sat Oct 31, 2020 4:42 am

Re: Stage 3, likelihood of recurrence after resection & chemotherapy

Postby LivinginHope » Fri Jan 22, 2021 3:17 pm

Update!!

Cycle 2 is complete. Means we're now halfway through his chemo regime. (3m feels so much easier to comprehend than 6m!)

The 2nd cycle was thankfully even better than the 1st. He had even fewer side effects (barely had any in cycle 1, just a little tingling for a few days but it stopped v quick).

So here's hoping the next cycle is just as kind as the first 2 have been.

Hope you're all well x
Husband (36):
- 5/10/20 Rectal CA
- 21/10/20 LAR, 21 nodes removed
- 31/10/20 5/21 positive=Adj Chemo. Surgery=R0
- 11/20 Sperm banked
- 1/12/20 Onc appt: confirmed T3N2M0, regional not distant nodes. Pre-op CEA 2.7/post op 0.7. No mutations. Plan 6m of CAPOX.
- 12/20 Round 1
- 4/1/21 Onc appt: new evidence, 3m is as good as 6m, REDUCED regime to 3m! Round 2. Pre-chemo CEA 0.6
- 25/1/21 Round 3. Pre-chemo CEA 1.1
- 17/2/21 Round 4.
- 2/3/21 Chemo ends
- 07/21 CLEAR CT SCAN & CEA 0.7
-10/21 CEA 1.1

ibcaree
Posts: 39
Joined: Wed Nov 19, 2008 6:12 pm
Location: Oklahoma

Re: Stage 3, likelihood of recurrence after resection & chemotherapy

Postby ibcaree » Fri Feb 05, 2021 11:16 am

I previously had stage IIIb colon cancer 13 years ago. I had a resection and was administered chemotherapy. I have been blessed and fortunate to have had no recurrences and clean colonoscopies ever since. Praying for a great outcome for you and your family.
Diagnosed with Rectal Sigmoid Colon Cancer at age 33 11/11/08
Colon Resection Surgery 12/15/08
Stage IIIB; 4/18 lymph nodes affected
5FU 1/28/09 (12 treatments over 6 mos)
Mom to two boys age 15 and 12, and a beautiful post cancer baby girl aged 3 years!
Age: 44
NED as of July 09!!
"God can restore what is broken and change it into something amazing. All you need is faith." Joel 2:25

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ANDRETEXAS
Posts: 654
Joined: Fri Feb 14, 2014 11:01 am
Location: Austin, Texas (University of Tennessee alumnus)

Re: Stage 3, likelihood of recurrence after resection & chemotherapy

Postby ANDRETEXAS » Sat Feb 06, 2021 12:23 am

LivinginHope. Thanks for the update. Happy to hear things are going well. Stay positive and stay strong! Andre
2014
2/10 - Colon resect
2/13 - DX- Stage IIIb
6 of 18 lymph nodes cancerous
3/7 - Port placed
3/11 - FOLFOX (12 rds w/full oxi)
8/14 - Chemo finish
8/25 - CT- Inc
9/5 - clean PET
12/10- clean CT
2015
3/2 - Clean colonoscopy & port removed
3/4- clean CT
9/21- clean CT
2016
3/23- clean CT
2017
2/22- clean CT
2018
3/21 - clean CT
4/11 - clean colonoscopy
2019
3/11 - clean CT
9/23 - Five-year release - Annual visits now !
Next colonoscopy - 2023

ONE DAY AT A TIME !

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CaliforniaBagMan
Posts: 330
Joined: Wed Oct 14, 2009 6:05 pm
Location: California

Re: Stage 3, likelihood of recurrence after resection & chemotherapy

Postby CaliforniaBagMan » Sat Feb 06, 2021 7:56 am

Just wandered back on here after a long absence.

fyi I was stage III with T4 tissue invasion back in 2007. I hope your experience with recovery is as good as mine has been. Prayers for you and family.
CT guided biopsy on mass - still NED !!!
CT scan finds new 2x3cm mass on 10/09
APR surgery 11/07; NED thereafter
Folfox/radiation 9/07-10/07
DX Stage III rectal cancer 7/07

I_will_fight
Posts: 85
Joined: Mon Jun 29, 2020 3:38 pm

Re: Stage 3, likelihood of recurrence after resection & chemotherapy

Postby I_will_fight » Sun Feb 07, 2021 2:19 am

polluxx wrote:I really appreciate the statistic from your own doctor’s cancer group. I was also staged at 3c and I interpreted what I read online to mean that only 25% of 3c patients were even alive in 5 years. Either way, I like 60% much better.

When I finished Chemo, my oncologist wanted me to get my port taken out. I decided to keep it for 2 years anyway. She said, ”I really don’t think you will need it again.” That surprised me, but also made me feel a little more hopeful. It is better to try to live like you expect to go on living, but I find that hard to do sometimes. My oncologist reminded me that I almost died twice then had 6 months of Chemo, so it is just going to take longer for my emotional healing to catch up to my physical healing.


Apologies for digressing

Hi Pollux, I just noticed in your signature that you had the liquid biopsy done on you and it came back negative.

Could you please tell me which liquid biopsy you took? (Signatera, FoundationONE...) also did the liquid biopsy provide any other information (like TMB, MSI or expected mutation sensitivity to different treatments)

Thank you, BR

Javi
46 yo male Spain
06/20 - 6cm T3N0M0 CC splenic flex
No liver mets, 3 and 4 mm lung dots (unlikely to be mets)
lymp 0/37
MSH6- other MMR+
KRAS mt G13D
V/LNI absent
PNI present
07/20 - hemicol surg, 13cm clear margins, optimistic surgn.
08/20 - CAPOX regime, 4 cycles.
11/20 - CAPOX completed. CAT scan: lesion in liver, suspect hemoangioma, no changes lung dots.
12/20 - Clean colonoscopy
02/21 - MRI liver lesion is nonspecific, stable.

LivinginHope
Posts: 40
Joined: Sat Oct 31, 2020 4:42 am

Re: Stage 3, likelihood of recurrence after resection & chemotherapy

Postby LivinginHope » Sun Feb 07, 2021 11:45 am

Thank you all for your replies since my last update and your positive stories - they are beyond helpful at keeping us strong.

Nearly at the end of Cycle 3 - the tingling (due to cold) previously only lasted the first 3 days, he's found it has lasted the whole cycle this time...but not too severe and it starts after 15 secs of holding something cold and stops instantly. So thankful that he's not had any other side effects and we truly know how lucky he has been.

1 more cycle to go :D
Husband (36):
- 5/10/20 Rectal CA
- 21/10/20 LAR, 21 nodes removed
- 31/10/20 5/21 positive=Adj Chemo. Surgery=R0
- 11/20 Sperm banked
- 1/12/20 Onc appt: confirmed T3N2M0, regional not distant nodes. Pre-op CEA 2.7/post op 0.7. No mutations. Plan 6m of CAPOX.
- 12/20 Round 1
- 4/1/21 Onc appt: new evidence, 3m is as good as 6m, REDUCED regime to 3m! Round 2. Pre-chemo CEA 0.6
- 25/1/21 Round 3. Pre-chemo CEA 1.1
- 17/2/21 Round 4.
- 2/3/21 Chemo ends
- 07/21 CLEAR CT SCAN & CEA 0.7
-10/21 CEA 1.1

polluxx
Posts: 74
Joined: Thu Jul 10, 2008 9:41 pm

Re: Stage 3, likelihood of recurrence after resection & chemotherapy

Postby polluxx » Sun Feb 07, 2021 12:16 pm

Hi, I got into a study with Signitera so that I can use their ctDNA test every 3 months as part of my surveillance plan.

My report says “Signatera Negative
MTM/ml Not Detected”

Then there is a chart for plotting historical results, but it is blank. My understanding is though that if I do end up having a recurrence, the test will help inform us of which treatment will be most effective against my specific cancer.

My pathology report from my surgery (2/27/2020) says that MLH1, MSH2, MSH6, PMS2, all have “intact nuclear expression”.

I know I had further genetic testing done because my dad died of colon cancer. I didn’t scrutinize that report much because it just said negative for the genes they tested.

Hopefully that is helpful. I sure don’t pretend to understand everything about my illness, but I’m trying to change that.

Good luck!
Stage 3c
2/2020 Right colon hemicolectomy (invasive adenocarcinoma with micropillary features)
Moderately differentiated
Tumor size: 4.4 in greatest dimension Metastatic Carcinoma in 12 out of 28 lymph nodes
Extranodal extension identified
Margins negative

3/2020 Began 12 rounds of FolFox
9/2020 Finished FolFox
12/2020 PET Scan-NED
1-2021 ctDNA Test negative
5-2021 ctDNA Test negative
7-2021 ctDNA Test negative
9-2021 PET/CT Scan-NED

LivinginHope
Posts: 40
Joined: Sat Oct 31, 2020 4:42 am

Re: Stage 3, likelihood of recurrence after resection & chemotherapy

Postby LivinginHope » Fri Feb 19, 2021 6:48 am

Cycle 4 is underway!

He had his Oxaliplatin infusion on Tuesday and is currently approaching the first weekend. The 1st cycle he was really tired by the first weekend but the 2nd and 3rd cycles weren't anywhere near as bad for fatigue. We're waiting to see how this one goes but so far so good!

We are so thankful for how lucky he's been, he's had very few side effects, no nausea/sickness, very very mild cold sensitivity - which goes away about 10 days post infusion which is reassuring.

CEA increased a little between the last rounds. It dropped to 0.6 before Cycle 2 then before Cycle 3 it went to 1.1...we're not sure what it was before Cycle 4 (he forgot to ask!). So hoping that's not a bad sign - I think it's normal for it to fluctuate during chemo?!

Thanks to the update in guidance for adjuvant chemotherapy, this is his FINAL round of CAPOX. :D. Whilst we're super excited to 'have our lives back' and for treatment to be over, it doesn't really feel like that in some ways - don't get me wrong we know how lucky he's been, but the anxiety about it coming back is super high.

He's got a CEA tracker blood test in April, then every 6m for 3yrs. A CT scan in July, then another in 9m. A Colonoscopy in October. So the aim is for them to all confirm NED and stay that way, we just can't help feeling that we're waiting for bad news, please tell me this feeling gets easier over time :(?
Husband (36):
- 5/10/20 Rectal CA
- 21/10/20 LAR, 21 nodes removed
- 31/10/20 5/21 positive=Adj Chemo. Surgery=R0
- 11/20 Sperm banked
- 1/12/20 Onc appt: confirmed T3N2M0, regional not distant nodes. Pre-op CEA 2.7/post op 0.7. No mutations. Plan 6m of CAPOX.
- 12/20 Round 1
- 4/1/21 Onc appt: new evidence, 3m is as good as 6m, REDUCED regime to 3m! Round 2. Pre-chemo CEA 0.6
- 25/1/21 Round 3. Pre-chemo CEA 1.1
- 17/2/21 Round 4.
- 2/3/21 Chemo ends
- 07/21 CLEAR CT SCAN & CEA 0.7
-10/21 CEA 1.1

User avatar
horizon
Posts: 1642
Joined: Tue Apr 12, 2011 10:10 pm

Re: Stage 3, likelihood of recurrence after resection & chemotherapy

Postby horizon » Fri Feb 19, 2021 11:34 am

LivinginHope wrote:He's got a CEA tracker blood test in April, then every 6m for 3yrs. A CT scan in July, then another in 9m. A Colonoscopy in October. So the aim is for them to all confirm NED and stay that way, we just can't help feeling that we're waiting for bad news, please tell me this feeling gets easier over time :(?


Really happy he's almost done with treatment. I won't sugar coat things. That fear of it coming back is always in the back of my mind. BUT it used to be almost paralyzing and now I can go a good stretch of time without thinking about cancer. That used to seem unthinkable to me.
I'm just a dude who still can't believe he had a resection and went through chemo (currently 10 years NED). Is this real life?

LivinginHope
Posts: 40
Joined: Sat Oct 31, 2020 4:42 am

Re: Stage 3, likelihood of recurrence after resection & chemotherapy

Postby LivinginHope » Fri Feb 19, 2021 1:43 pm

horizon wrote:
Really happy he's almost done with treatment. I won't sugar coat things. That fear of it coming back is always in the back of my mind. BUT it used to be almost paralyzing and now I can go a good stretch of time without thinking about cancer. That used to seem unthinkable to me.



Thank you so much and thank you for being so honest! I'm slowly realising it's never going to go away, I just pray we get to a point like you have, where it isn't a paralysing fear that makes up second guess decisions :(. We'd love to be able to have a care free life like we used to, that just isn't realistic at the moment :cry:
Husband (36):
- 5/10/20 Rectal CA
- 21/10/20 LAR, 21 nodes removed
- 31/10/20 5/21 positive=Adj Chemo. Surgery=R0
- 11/20 Sperm banked
- 1/12/20 Onc appt: confirmed T3N2M0, regional not distant nodes. Pre-op CEA 2.7/post op 0.7. No mutations. Plan 6m of CAPOX.
- 12/20 Round 1
- 4/1/21 Onc appt: new evidence, 3m is as good as 6m, REDUCED regime to 3m! Round 2. Pre-chemo CEA 0.6
- 25/1/21 Round 3. Pre-chemo CEA 1.1
- 17/2/21 Round 4.
- 2/3/21 Chemo ends
- 07/21 CLEAR CT SCAN & CEA 0.7
-10/21 CEA 1.1

User avatar
horizon
Posts: 1642
Joined: Tue Apr 12, 2011 10:10 pm

Re: Stage 3, likelihood of recurrence after resection & chemotherapy

Postby horizon » Fri Feb 19, 2021 3:28 pm

LivinginHope wrote:Thank you so much and thank you for being so honest! I'm slowly realising it's never going to go away, I just pray we get to a point like you have, where it isn't a paralysing fear that makes up second guess decisions :(. We'd love to be able to have a care free life like we used to, that just isn't realistic at the moment :cry:


I remember being where you both are in the journey. The thing that would upset me the most was the thought of something happening to me and my niece not even remembering me. Now I'm happy to report I've done a good job being the crazy/fun uncle. There can be brighter days ahead.
I'm just a dude who still can't believe he had a resection and went through chemo (currently 10 years NED). Is this real life?

LivinginHope
Posts: 40
Joined: Sat Oct 31, 2020 4:42 am

Re: Stage 3, likelihood of recurrence after resection & chemotherapy

Postby LivinginHope » Sat Feb 20, 2021 6:36 am

horizon wrote:I remember being where you both are in the journey. The thing that would upset me the most was the thought of something happening to me and my niece not even remembering me. Now I'm happy to report I've done a good job being the crazy/fun uncle. There can be brighter days ahead.


It's a really hard position because we should be so excited for the end of active treatment but we've realised active treatment feels like a 'safe place' because he's constantly monitored and has very regular contact with the professionals! The gap inbetween surveillance tests/scans feels very scary & risky, that it could be growing again inside him and we have no idea until after a scan, which could be 6-9m away :shock:

Please don't get me wrong, reading all your positive stories does fill me with hope and positivity, and I do have positive times where I can think about the future without worrying he'll no longer be here, I think its just the timing of everything!
Husband (36):
- 5/10/20 Rectal CA
- 21/10/20 LAR, 21 nodes removed
- 31/10/20 5/21 positive=Adj Chemo. Surgery=R0
- 11/20 Sperm banked
- 1/12/20 Onc appt: confirmed T3N2M0, regional not distant nodes. Pre-op CEA 2.7/post op 0.7. No mutations. Plan 6m of CAPOX.
- 12/20 Round 1
- 4/1/21 Onc appt: new evidence, 3m is as good as 6m, REDUCED regime to 3m! Round 2. Pre-chemo CEA 0.6
- 25/1/21 Round 3. Pre-chemo CEA 1.1
- 17/2/21 Round 4.
- 2/3/21 Chemo ends
- 07/21 CLEAR CT SCAN & CEA 0.7
-10/21 CEA 1.1

User avatar
horizon
Posts: 1642
Joined: Tue Apr 12, 2011 10:10 pm

Re: Stage 3, likelihood of recurrence after resection & chemotherapy

Postby horizon » Mon Feb 22, 2021 12:50 pm

LivinginHope wrote:It's a really hard position because we should be so excited for the end of active treatment but we've realised active treatment feels like a 'safe place' because he's constantly monitored and has very regular contact with the professionals! The gap inbetween surveillance tests/scans feels very scary & risky, that it could be growing again inside him and we have no idea until after a scan, which could be 6-9m away


I would try not to think of it as "risky". In my opinion not doing the recommended treatment would be risky. He did what was suggested for the best chance for a positive outcome. I was anxious to get some semblance of normalcy back after 6 months of chemo. That's not to say I didn't have big worries when it came time to do scans!
I'm just a dude who still can't believe he had a resection and went through chemo (currently 10 years NED). Is this real life?


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