The Colon Club

so now I know why my CEA was so high. I now have a liver met, 5cm...Getting port installed 15th with a liver biopsy and start chemo on the 20th.

2 days on 12 days off folfox 5fu /oxaliplatin...and some avastin near the end possibly depending on liver biopsy. Liver tumor is stable.

Any advice. I am so confused on survivable and beating this thing, but I know I will.

Hi ,
Sorry to hear your news . It takes time to find your feet but you will .
I hope my mum can give you some hope . Her liver has remained clear for the last six years .
She had her chemo and surgery and no long term liver issues .
Hope it gives you a little lift ,
Take care,
Stu

Stu,

It does. thank you so much. You read and hear all this talk about 5 year survival rate and get scared, but when I see posts like yours and others here, it makes me feel confident that I have a long life ahead of me. 3 little kids means I need to be here.

Thanks,
Rikimaroo

Those five year rates are based on mountains of outdated data. You will want to look at them and start running a bunch of statistical brain teasers in your head. Don’t, because the statistics are skewed, and not in a positive way.

It’a not a cake walk - cancer never is - but your doctors have a lot of different options that the patients making up most of those statistics did not.

Don't panic about things that you cannot influence << I agree - easier said than done >>.

As Basil said, there are many options these days. Keep in mind that you're in the hands of docs who have spent half their lives understanding cancer.

One good thing is that you already know is that your CEA may well be a good indicator for you - easy to monitor.

I started off with liver mets that were too big for resection. Had a rough ride and chemo wasn't easy, but effective.
I wish you the same.

Don't spend too much time on Google
Don't conclude anything from what you find before you've soon your ons seen your oncs
Take it day by day / celebrate each and every success however small

Best wishes, Leon

edit: spelling

Thanks Leon your story gives me hope. Basil I agree. I will keep at it and stay positive.

Riki,

Both depressing and frightening news for sure but keep the faith because I had two big fat liver mets in 2010 and I’m doing well in 2017. A good outcome is possible.

Best to you,
N

NedPlease that is amazing news my friend. Thank you for the well wishes.

Riki,

A treatment do-over for me would be to ask for IV fluids because I had much difficulty staying hydrated. It affected my fatigue level and I’m convinced IV fluids could’ve made life much better. Something to think about especially as a parent of young children

N

Thanks everyone. I feel so disappointing in myself for not doing surgery in June. I may have been done with this. The W&W protocol I did I should of done chemo as a mop-up and I probably wouldn't be in this situation. I hate thinking this way and I know I shouldn't but I put myself in now such a sticky situation.

Rikimaroo wrote:Thanks everyone. I feel so disappointing in myself for not doing surgery in June. I may have been done with this. The W&W protocol I did I should of done chemo as a mop-up and I probably wouldn't be in this situation. I hate thinking this way and I know I shouldn't but I put myself in now such a sticky situation.

I played the 'What if I" game. Don't.

I had a resection three years ago. No lymph node involment. Clear margins. No chemo.
When I went to a colon cancer specialist this November, they told me that they wouldn't have recommended chemo after either.

I didn't ask the question and I'm not sure why she volunteered that info but I'm glad she did.

Dont beat yourself up looking back. Focus on kicking ass again.

That was one of the reasons my oncologist recommended chemo after surgery so I wouldn't play the "what if" game if I did have a recurrence. It is a tough decision, I considered not doing chemo as my surgeon told me that only scar tissue remained after chemo/radiation, and I may not need it after surgery. But on my oncologists recommendation I went ahead. But if she had given me an indication opting out was okay I probably would've. Don't beat yourself up, you don't know for sure that your decision was the reason for your recurrence. Just know so many here are doing very well after recurrences and you can be one of them as well. Move forward and fight
Robin,
It looks like you are responding well to treatment as your CEA is coming down. That is great.

Thank you guys really appreciate it. Robin hang in there my brother you’re going to be this glad you responded well to treatment.

You may want to consider looking into HAI / hepatic pump, especially if your met(s) is/are liver-limited. It can really have dramatic results, and it's the main reason I'm still here today. Most oncs that don't know much about HAI will discourage looking into it, voicing doubts on effectiveness. However, at hospitals with expertise in the treatment (esp. Memorial Sloan Kettering in NYC), they are well aware of its effectiveness. You may want to search this forum for "HAI"; I'm sure there are hundreds of posts about it. Best wishes in your treatment.

-Chip

I kind of went through this recently. Stage 3B with a complete response after surgery. Surgeon suggested that I could do Xeloda or 5-FU of Adjuvant and skip the Oxaliplatin. Oncologist recommended, of course, Oxaliplatin. I've seen a lot of people go through this decision lately and the vast majority go with Adjuvant chemo, both 2s and 3s. At the 2 level, it's a much tougher decision, both for the oncologist and the patient. So I'm taking the risk on neuropathy in exchange for better odds of it not coming back. Believe me, if I could skip Adjuvant or Oxaliplatin, I would. No fun doing this stuff for the next five months.