The Colon Club

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

So all in all, not much to update, just to say that things a good for now and we pray it continues!

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

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.

August 2021

First surveillance CT scan was CLEAR

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

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

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

Thanks for checking in! Do you realize that you were the 373rd person to ever join this forum? -- And that was a long, long time ago!

No recurr here …. Just reaching 10 years x

Hi there,

Thank you so much for your posts and the reassurance!!

He just had the results from his CEA blood test (take last week)... It's 1.1...so it has risen a bit since the last test. Bit anxious about that. Prior to his surgery it was only 2.7 at its highest, post surgery and during chemo it was around 0.6/0.7

He's due a Colonoscopy this month too so praying that's clear.

Hope you're all well.

Hello to all.

I just joined the forum and am pretty scared about this whole thing. My wife was diagnosed in May 2020 and had surgery in June 2020. After surgery, she was diagnosed with Stage 3 CRC. No spread however she had lymph node involvement of 18/37. Did 12 rounds of chemo of 5FU and Oxi. No reductions in the amount. Finished in December 2020 with clear CT scan. Follow up blood work was perfect and had another clear CT scan in July 2021. Also had clear Colonoscopy in April 2021. Most recent CEA has risen from 1.7 to 7. ONC said not to worry but guess what, I am worried. Does this automatically mean she has a recurrence? Just looking for some advice. Also, are there any recent survival statistics or recurrence rates that have been posted? Sorry for the questions but as most people have commented, just worried. Prayers to everyone!!
Diag: 05/20
Surgery: 06/20
Chemo: 07/20 - 12/20
CEA range after chemo: 1.5 - 1.7
LNI: 18/37
Stage: 3c
Clear CT scans 12/20 and 7/21

That's an easy question to answer: nothing automatically means anything.

Seriously, there are many things that can cause CEA to rise. If CEA is a good marker for her, a certain level of concern may be warranted, but it is my understanding that a trend is more significant than a single reading. I know it is hard not to worry, but try not to freak out unless or until you know there is definitely something there. And if there is, gather yourself and help her deal with it. Best to you.

ANDRETEXAS wrote:I was Stage IIIb ...see below. Stay positive..and have your husband get as much exercise and rest he can during chemo. Come back to this forum for any questions you have. There are many people here who can give you guidance and advice.

hI, I'm new here. (Ukraine) I do not know English well tell me what type of tumor did you have?



_____________________________________
04.06(jun)2021
Mucinous adenocarcinoma sigmoid cancer
( ICD-O-3: 8480/3)

pT3 pN1a(1/36) M0 TD1 L0 V0 Pn0
CEA 2, CA19-9 0.69

MMEp/MSS: MLH1+, PMS2+,MSH2+, MSH6+



09.06 extended resection (with abdominal wall)

28.07 Folfox6 - 12 cycles

24.09 magnetic resonance tomography- clear
Cea 2.2
8.11.2021 - 7 cycles n

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

why was + Oxi prescribed? what type of tumor was it? how aggressive is g? I have 3b mucinous, surgery - sigmoid resection, one lymph node out of 36 is damaged, folfox is 12 rounds. 7 is done now. I'm afraid that I'm missing something in the treatment (((((

Just pointing out that there may be some confusion here. FOLFOX by definition includes Oxaliplatin, that’s the “OX” bit. If you’ve had 7 of FOLFOX, you’ve had a lot of Oxaliplatin.

Koreysue wrote:I was 39 at diagnosis- stage 3 in 2017
Had surgery and chemo (folfox)
no recurrence so far

Yes, i can offer some pointers if ihis cheno is folfox. I will wait for an update from you,
I too recommend staying active even in treatment when possible. My onc said that can be huge in cancer prevention. With Folfox there is cold sensitivity, so walking outside probably wont be possible depending on your climate, but a stationary bike could work.

And yes- I say go with a chest port for chemo access

ksue

hello, what type of tumor did you have, G 1-2-3?

Julia123 wrote:

Koreysue wrote:I was 39 at diagnosis- stage 3 in 2017
Had surgery and chemo (folfox)
no recurrence so far

Yes, i can offer some pointers if ihis cheno is folfox. I will wait for an update from you,
I too recommend staying active even in treatment when possible. My onc said that can be huge in cancer prevention. With Folfox there is cold sensitivity, so walking outside probably wont be possible depending on your climate, but a stationary bike could work.

And yes- I say go with a chest port for chemo access

ksue

hello, what type of tumor did you have, G 1-2-3?

My report says “adenocarcinoma , moderately diferentiated