The Colon Club

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!

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

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.

LivinginHope. Thanks for the update. Happy to hear things are going well. Stay positive and stay strong! Andre

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.

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

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

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!

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. . 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 ?

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.

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

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

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.

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

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!

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!

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)