Recently diagnosed with Stage 3 Colon Cancer

thruby

Hi! I am new here and about to start chemo treatments but have not had much time to do any homework on the subject.  I am seeking second opions but have been instructed to start treatment and wait till second cycle and scans to meet for second opinion.  I was admitted to the hospital on 8/31/16 with severe abdominal pain. I was told I had stage 3c colon cancer and 2 days later I was having half my colon removed (severe blockage as a result of 2 masses) and lymph nodes (12 out of 20 cancer was detected). I was discharged from the hospital 9/8 (day before my 48th bday).

I'm scheduled to have a port installed Monday and then I start chemo for 6 months on 10/12 (treatments every two weeks). I opted for folflox (I think) infusions followed by 5-FU (administered by pump for 48 hours) and some vitamin that will be administered with the 5-FU.  I am trying to read a lot of the posts on here so I can learn things that I can do that may help me cope wiht the side effects of treatment. I have three kids who are not used to seeing me down and out so anything I can do to better manage treatments I certainly will try.

I would appreciate any advice.

ellend

FOLFOX side effects

I am on 5/8 treatments. I started with FOLFOX, but the oncologist took me off the Fluorouracil and Leucovorin (Flonilic acid) after the 2nd treatment due to low platelet count. I get the Oxaliplatin infusion and the 48 hour 5-FU pump.

Before they start the Oxaliplatin, I get infused with anti-nausea drugs that seem to do pretty well controlling nausea. I have experienced mild nausea a few days after the infusion, but nothing that required drugs to control, at least so far. Other people I have talked to in the infusion center have also said they didn't experience nausea. If you experience severe nausea, be sure to tell the people at the infusion center because they will adjust the anti-nausea drugs to try to control your nausea.

Almost everyone seems to suffer the cold sensitivity in their hands, mouth and feet due to the Oxaliplatin. I use gloves to get items out of the refigerator or freezer and drink room temperature liquids. I'm on the off-week now and the sensitivity is not quite as acute, but I'm still careful. It is a weird buzzing almost like an electrical shock. Drinking cold liquids can feel like drinking shards of glass.

Get plenty of sleep, you will get fatigued during treatment. Getting out and walking seems to help, but listen to your body and don't overdo it. At least some people have reported getting diarrhea, but also say Immodium helps.

Everyone responds differently, be sure and talk to the oncologist about potential side-effects, what to look for and how to manage them.

Good luck with the treatment - my oncologist claims most people tolerate it fairly well. Sorry you have to deal with this.

Ellen

 

JanJan63

The best advice I can give

The best advice I can give you is to keep searching for advice on here. You can ask whatever you want, no question is stupid or silly. Try not to Google it. You'll get some accurate information but will have to wade through all the inaccurate, old, and outright untrue information. There's nothing like talking to people who have actually gone through something rather than the experts weighing in about something they know the numbers on but have never experienced themselves.

You're going to get all kinds of advice from well meaning people, friends, family and acquaintances, much of which will be useless or untrue. Know that stage three colon cancer is treatable for most people. That may not mean that you'll beat it, it could mean that it'll be managed for a very long time.

An important thing to keep in mind is that the treatment and response is different for everyone. There are certainly some generalities such as the neuropathy from the Folfox, I think everyone gets that to lesser or greater degrees, but mostly you will not be able to ask someone what the rection or response to something might be and know that it will be the same for you. You'll be able to get an idea of what can or is likely to happen but there are no guarantees.

That was one of the things that I found the most challenging dealing with this. No straight answers. Right now I'm over two years out from surgery, coming up on two years out from chemo, my last two CT scans show nothing, my CEA (tumour marker for some cancers including colon) is normal and I feel fine. But they will not tell me I'm NED (no evidence of disease) or that I'm in remission. It's always 'well, let's wait until the next scan'. I should just be happy that they can't find anything but I want a professional to make it official. 

Anyway, ask us questions, share your story, we'll all help as much as we can. I think it's cathartic for those of us who have been diagnosed with this to help other as much as we can. Soon you'll be doing the same thing but your journey will be different. Welcome to the club nobody wants to join.

Jan