Stage 3, likelihood of recurrence after resection & chemotherapy

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LivinginHope
Posts: 36
Joined: Sat Oct 31, 2020 4:42 am

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

Postby LivinginHope » Sat Feb 27, 2021 8:32 am

horizon wrote:
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!



Definitely a better way of looking at it! We’re definitely at that anxious point right now! Only a few more days to go and then he’s done with treatment :) keen for it to finish so he can recover properly but you know the mixed feelings it brings. Dreading the scanxiety already!

Quick question,hope someone will know the answer...from what point are you classed as NED? If his scan/colonoscopy are clear...is he considered NED from that point OR is is the anniversary of the surgery?! We’re a bit confused!
Only thought about it as we are considered a move abroad and you need to be 5yrs NED of Colon cancer. (We’re trying to be optimistic and pray that we’re lucky enough to make it that far)
Husband (36):
- 5/10/20 - Rectal CA, 15cm up
- 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

LivinginHope
Posts: 36
Joined: Sat Oct 31, 2020 4:42 am

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

Postby LivinginHope » Sun Jul 04, 2021 1:02 pm

July 2021 UPDATE...

In April, he had a good CEA tracker result of 0.7...which is consistent with his previous results so that was a big relief.

Since finishing chemo we've pretty much gone back to normal, he's back at the gym 3x a week (as he has been since January). Thankfully he's had no lasting side effects of the chemotherapy - we will have to wait until the cold weather returns to see if he gets any neuropathy, but overall we feel really lucky.

Today he has his first post-treatment, surveillance CT scan, so as standard I'm super anxious and he's calm as anything!

We are hoping to start trying for a baby in September :) (6m post chemo as advised) so we are praying nothing holds us back. We are also planning on getting semen analysis done in September too to see if the chemo did do any damage to his swimmers :cry:

So all in all, not much to update, just to say that things a good for now and we pray it continues!
Husband (36):
- 5/10/20 - Rectal CA, 15cm up
- 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

Hooandtrue93
Posts: 12
Joined: Tue May 11, 2021 10:28 pm

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

Postby Hooandtrue93 » Mon Jul 05, 2021 2:52 pm

polluxx wrote: 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.


This always perplexed me. US Seer data and whatnot show Stage IIIc survival around 28% but Canada, for example, shows a survival rate of 52% for stage IIIC and I've talked with other IIIc who have said their doctors said they have a 50% shot of being free 5 year.

Of course at the end of the day, we are a statistic of one. And technology is changing faster than statictics can update
28 year old, son of 62 year old mom
Stage 3B Duodenal Adenocarcinoma.
7/13 lymph nodes positive
02/22/2021: Whipple Surgery
04/08/2021: Port Surgery. CtDNA test sample taken (positive)
04/13/2021: Folfox-6 begins for 6 months

PainInTheAss
Posts: 673
Joined: Tue Jul 02, 2013 3:08 am

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

Postby PainInTheAss » Sun Jul 11, 2021 2:45 am

Hooandtrue93 wrote:
polluxx wrote: 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.


This always perplexed me. US Seer data and whatnot show Stage IIIc survival around 28% but Canada, for example, shows a survival rate of 52% for stage IIIC and I've talked with other IIIc who have said their doctors said they have a 50% shot of being free 5 year.

Of course at the end of the day, we are a statistic of one. And technology is changing faster than statictics can update


Yes, this is a very scary thing to see when you are first diagnosed as a IIIc. It's important to remember that SEER is Medicaid/Medicare and that most colon cancer patience are in their 70s. So, you have to think about what that chances are that someone in their 70's will be alive PERIOD in 5 years, whether they have cancer or not.

My oncologist used the stats from their own facility and "younger" patients (people under 70, really) had a much higher percentage than SEER. I was told that doing chemo after surgery would raise my chances of being disease-free (not just alive) after 5 years to 60%. I liked those odds. And here I am, 8 years after diagnosis, disease free.
47yo single mom of 4 (24, 21, 18, 16) at Dx
6/13 - RC T4b IIIc 5LNs on PET CEA 5.4
8/13 - Finish chemorad
10/13 - APR/hyst+ovaries/perm colostomy 2/12 nodes+
6/14 - Finish Xelox 6 rds
1/15 - CT clear CEA 0.2
10/15 - CT/MRI clear CEA 0.7
4/16 - CT clear
10/16 - CT/MRI clear CEA 0.6
5/17 - PET clear? Follow up MRI to verify inflammation

LivinginHope
Posts: 36
Joined: Sat Oct 31, 2020 4:42 am

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

Postby LivinginHope » Fri Aug 06, 2021 12:19 pm

August 2021

First surveillance CT scan was CLEAR :D

A huge relief for us to hear that news! And it felt like the last hurdle before we start trying for a baby in September!

I hope you're all doing well and powering on with your journeys xx
Husband (36):
- 5/10/20 - Rectal CA, 15cm up
- 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

vancanes319
Posts: 1
Joined: Wed Sep 01, 2021 1:58 pm

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

Postby vancanes319 » Wed Sep 01, 2021 2:10 pm

Hi, I could not login under my old user name because I do not have access to my old email address.

I was diagnosed in November 2004 at 41 years old with Stage IIIC with 6 nodes positive and a colostomy. I had 12 rounds of Folfox with Oxi. My colostomy was reversed after my chemo was completed.

My four year old son was my driving force. I was told by MSKCC to walk a lot (the first two or three years I walked around 4 miles a day 5/6 times a week, eat a healthy diet, limit red meat and no processed food, take a baby aspirin a day. I'm not sure if the baby aspirin is still advised but I continue to take it.

There is hope always.........

Lots of love and thoughts.

Lori

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O Stoma Mia
Posts: 1654
Joined: Sat Jun 22, 2013 6:29 am

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

Postby O Stoma Mia » Thu Sep 02, 2021 4:17 pm

vancanes319 wrote:Hi, I could not login under my old user name because I do not have access to my old email address.

I was diagnosed in November 2004 at 41 years old with Stage IIIC with 6 nodes positive and a colostomy. I had 12 rounds of Folfox with Oxi. My colostomy was reversed after my chemo was completed.

My four year old son was my driving force. I was told by MSKCC to walk a lot (the first two or three years I walked around 4 miles a day 5/6 times a week, eat a healthy diet, limit red meat and no processed food, take a baby aspirin a day. I'm not sure if the baby aspirin is still advised but I continue to take it.

There is hope always.........

Lots of love and thoughts.

Lori


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