The Colon Club

It was two years ago today that I had my colonoscopy and woke up to the doctor saying "It's cancer. I'll be sending it out for tests to make it official, but I can tell just by looking at it that's it's cancer." I was hoping it was a sick April Fool's joke one day late, but nope, it was cancer.

I've been through a lot in the last two years and I've learned a lot, too.

I'm glad I kept a journal during those first few months because even though it's hard to read, I'm glad I have that plus my posts on here and my FB posts to remind me how I felt and what I was thinking through all the steps of this journey. One thing I know for sure, the members here kept me sane (well, sane might not be the best description for me, but as close to sane as it's possible for me to be ).

Through every new and scary step, from the overwhelming first days, to difficult decisions, through radiation/Xeloda, through surgery and my open wound, through problems with my ileostomy and my bad reaction to Folfox, and now through the issues with reversal, members have been supportive and kind and full of helpful advice each and every time. Having cancer was a horrible experience, but it would have been at least ten times worse without the information and support I found here at Colon Talk. Thank you all from the bottom of my heart and especially from the bottom of my colon. Your friendship helped the pain in both places.

And just in case there are other weirdies like me out there whose CEA scores are super high but their doctors can't find any sign of spread, I want you to know that despite my scary CEA's in my signature, two years later my scans are still clean and my CEA hasn't been over 3 since my LAR, so you aren't alone. Despite what the internet will tell you, you can have a CEA over 100 and not have spread to other organs.

Thank you to those who started Colon Talk and to the moderators who keep it running and to the members, new and longterm, who make it such an invaluable place for those with colorectal cancer, their caregivers, people who fear they might have the disease, and those coping with the aftereffects of the treatments. I know you've touched more lives and helped more people than you'll ever realize.

Judy

Your post brought me a smile as my diagnosis date was two weeks and three days ago. T2n1m0. I'm on the prospect trial and still in shock. Start 6 rounds FOLFOX on Wednesday, surgery and 6-8 rounds FOLFOX following. Should be a fun ride (shudders). 40 y/o male with 5 and 8 year old boys. Praying for an all clear in two years, like you. Congrats!

Hello, Basil! It's a pleasure to meet you. I'm glad I made you smile.

I was offered the Prospect trial but it was very unproven then. My doctors wanted me to do the trial to avoid radiation damage. I had long discussions with members here on the board while trying to decide. Eventually after weighing everything, I went with my gut and decided to go for standard treatment--radiation and Xeloda, surgery, and then 6 months of Folfox.

It was very lucky that I did because I have a weird system and while I handled radiation and Xeloda with no major problems, I had a bad reaction to the Folfox when I started my infusions. Don't worry, my oncologist has been giving chemo treatments for decades and he has never had anyone have a reaction like mine, so you won't have one. Something about my system responded so strongly to the Folfox that all my blood levels went crazy and over a year later, eight of them still haven't gone back to normal. I had to be hospitalized for dehydration and after waiting several months for my levels to improve, they gave up on the rest of the infusions. I had my reversal and so far, so good. But if I had done the trial and had that reaction, I don't know what would have happened as far as surgery or how long that would have been delayed waiting for me to be strong enough. I guess sometimes going with your gut, even a gut with tumors, is the right thing to do.

Please keep us updated on your progress, especially with the trial. I'm very interested to know how different an experience it is compared to the standard treatment. And please, don't let my experience with the Folfox worry you. Most people tolerate it pretty well and I pretty much had unusual things happen at every step of the journey including the high CEA and horrible constipation throughout radiation which gives everyone else terrible diarrhea. Go figure. At least I keep things interesting for my doctors.

Take care,
Judy

Congratulations on 2 years!*hugs*

DarknessEmbraced wrote:Congratulations on 2 years!*hugs*

I've missed those hugs! Thanks and I hope you are doing well.

Judy

That's a big milestone. Congrats!

Jude you are a beacon of hope at colon.

Lots of love
Hannah