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Don_Gump
Posts: 3
Joined: Aug 2003

Hi all. I'm a 53 year old guy who was diagnosed with colon cancer on 6/9 and had surgery 6/10. The surgeon said it was a 6 cm "stage 2" tumor and they checked 18 lymph nodes. The lymph nodes were clear. They started me on 24 treatments of 5-FU and Leucovorin. The oncologist said he could not guarantee it would help, but he would guarantee it couldn't hurt. I had the port put in yesterday (that hurt!) for the chemo. Where can I find out statistics about surviving this? The oncologist said I had a 70% chance of being alive in 5 years. Being a pessimist, that equates to me of 1 in 3 of NOT being alive.

Tatie
Posts: 28
Joined: Aug 2003

70% prognosis is great! I also had 70-30 chances, but I was in the 30 part. You should be allright. With chemo, it will be even better. The port was painful for me too, but they couldn't get into my veins after a few injections, so it was worth it. Happy recovery!

spongebob's picture
spongebob
Posts: 2600
Joined: Apr 2003

Ahoy, Newbie (haven't heard that term in a few years!)

Welcome to the colon club. I was given odds, too, but since I don't bet except on 17-black I dismissed my numbers.

Your oncologist is right - the chemo probably won't hurt. You probably won't feel like running a marathon, but it affects everyone differently.

I didn't get a port. It was probably denial on my part. Instead I elected to let the chemotechs fish around for a vein for over an hour each week. I don't know which hurts worse! But at least I was able to exercise some level of "control" over my treatments and the staff understood and accomodated me well.

Lots of funky side effects from 5FU and luecovorin. Feet/hand syndrome, mouth and throat sores, nausea, etc. Nothing insurmountable. Suck ice chips when they push the 5FU to avoid the mouth sores, use Bath & Body Works' mango/shea butter balm or Mary Kay night time emolient balm on your hands and feet to mitigate the sores there. Keep a good attitude and enjoy the opportunity to read/nap/chat with some great people while you're "hooked up" getting chemo - before you know it, your treatment regime will be through and you'll have to get back to a normal life!

Be well, my friend.

- SpongeBob

StacyGleaso's picture
StacyGleaso
Posts: 1246
Joined: Mar 2003

Hi Don

Like SpongeBob said (the smart cookie that he is), everyone is different. I was VERY lucky, (blessed, whatever term works here) that I had no side effects with my chemo and radiation. My hair thinned a little, but that was all. Never lost all of it, in fact, people didn't even know I was sick. Never missed a day of work. Although this is not a smooth experience to have to go through, the best advice I can give you is to tell you to ditch that pessimistic attitude right now. It will not help your situation, and may even work against you. I had the port put in, and you'll love having it accessed rather than your veins. I finished my treatments last July (2002) and still plan on keeping my port until I hit that 5 year clear mark. I get it flushed every 3 months, and doesn't interefere with anything in my life. I was 33 when diagnosed, and a very active mom. You can and will get through this...failure is not an option. So, now that I'm done lecturing,(smile) realize that your world does not have to end with this diagnosis. Yeah, you're doing things you weren't planning on, but your experience will enable you to weed out the petty details of your life, and concentrate on what is important in your life...and that is priceless!

Use this web site and the people here to help you get through the rough times...take each day as it comes. Mine was stage 4, and today I'm fine...proof that there is hope!

Take Care,
Stacy

Don_Gump
Posts: 3
Joined: Aug 2003

I haven't heard the term "5 year clear mark". Is that a goal? Do the odds of reoccurance go down after 5 years?

StacyGleaso's picture
StacyGleaso
Posts: 1246
Joined: Mar 2003

Many doctors feel that if a patient reaches the 5 year mark without incident, they can be considered cancer free. Granted, that is not a license to throw away all common sense of eating right, and exercising regularly, but the further away you get from your diagnosis, the greater chance of keeping it away. Does that make sense? Just don't concentrate on the statistics...they will only drive you nuts...plus, be the one to change the curve in your favor!!!!!! Let me know if I can help you in any way!

Stacy

Tatie
Posts: 28
Joined: Aug 2003

That's fantastic, Stacey!!! So encouraging for Stage IV-ers.

spongebob's picture
spongebob
Posts: 2600
Joined: Apr 2003

Don -

Reading Stacy's response reminded me of one other side effect - hair loss.

I didn't lose all of mine either, it just thinned out a lot. I simply kept it cut really short (being active duty military it wasn't a big deal).

When my oncologist told me I would lose some of my hair, but not all of it, I asked if we could just target the hair on my back to be lost. He politely explained that they could not dictate what hair was lost and what was kept.

Alas, I'll have to just use nair.

Keep the spirits up and let me know if you have more luck targeting your back than I did.

- Sponge Bob

Tatie
Posts: 28
Joined: Aug 2003

"Welcome to the colon club"

Shouldn't be a semi-colon? :D

fandaj
Posts: 83
Joined: Apr 2003

Tatie: I like your nickname for folks like us--semi-colon club! Regards, Arlene

Pewter
Posts: 24
Joined: Aug 2003

Survival numbers are just that - Numbers! All published probabilities have variation - where you "sit" in that variation determines your outcomes. I like to think I sit in the extreme tail of survivors. I hate being "average". This keeps me going. Since I am probably not the only one that will survive, it would be nice to hear that you too feel you MUST be one of the probability outliers.

The hand/foot syndrome caused by the 5FU is the result of cell destruction (so to speak). Large doses of pyridoxine (B6), several hundred doses per day, help immensely. Don't worry about overdosing, B6 is a water soluble vitamin, and you will just pee out any excess. You might also ask your physician for a prescription for Celebrex (or similar) to help with some of the inflammation (hands, feet, mouth, eyes).

In terms of the port, put it into perspective: relative to the colon surgery, it was a piece of cake (and the scar is so much smaller too!). Also, since they use garden hose IV catheters for chemo, in the long run, the stick in your chest is nothing.

Hang in - Cause what's your alternative??

rep801's picture
rep801
Posts: 26
Joined: Apr 2003

SpongeBob, Stacy and Pewter are right on the money and have the great attitude it takes to get through all this stuff.

I went through 6 months of 5FU, Leukovorin etc. via drip over 2 years ago. I also was probably in somewhat of a denial stage at that point in avoiding the port. Side effects in my case were minimal, controlled by compazine and short hair cuts.

Don't listen to the odds, I was told I probably wouldn't have 2 years, yeah right! Keep in mind that oncologists are highly driven by statistics, but statistics are just the summaries. You are an individual with a unique situation - You've got to educate yourself and keep a positive attitude.

2bhealed's picture
2bhealed
Posts: 2084
Joined: Dec 2001

Hi Newbie,

Welcome to the hinder kicking club! We rock!

Stage 2 as I understand it is a very survivable stage especially since you had no lymph involvement. In fact, at Mayo, if I had had stage 2 there would not have been any encouragement of chemo. they don't do it for stage 2.

I was Stage 3 lymph positive but I declined the chemo and am doing alternative and Eastern medicine. I go to Mayo for all my diagnostics but I go to other practioners for my 'treatments'. And after 2 yrs I stay cancer free!

So keep up your spirits and check any negative attitudes at the door and kindly ask others to do so as well and you'll knock this thing outta the ballpark!

Having said that, I understand the grief process that we go through after our diagnosis. It's normal. Just don't stay there okay?

As for numbers I completely ignored them.

peace, emily

fandaj
Posts: 83
Joined: Apr 2003

Hi Don, I am a 56 year old female. I was diagnosed with stage 2 cancer in march. All lymph nodes were clear. I am getting the same 24 treatments as you. My oncologist said the same statistics as yours. I get the IV once a week. Sometimes it hurts a little, but mostly it's OK. Keep reading the advice on this website. The most important piece of advice is keep a POSITIVE attitude. The only time I realize I had colon cancer is when I go for chemo. But then I make an event out of it. My husband and I go out to lunch and then do some shopping. I have been lucky and haven't had much trouble with side effects. I never even think of the chance of not surviving (I have a feeling my husband might worry about it once in a while). Drink lots of water it makes it easier to find your vein for the IV. When I forget to drink lots of fluids, the nurse had a harder time poking me. Good luck, Arlene

margoob
Posts: 2
Joined: Sep 2003

Dear Semi colons ( I love that)
This is my first experience with a chat. Pretty dramatic way to get into it!
I am a 49 yo mother of 2 teenagers, diagnosed 7/31/03 w/ colon cancer. I had surgery 8/12. Stage 3, due to 1 of 16 positive nodes.
I had pretty much decided to get the porta cath- you all have convinced me.
My big dilemma is the choice between 5FU/leucovorin or 5FU/leucovorin AND Oxaliplatin (treatment is called Folfox 4 and is approved for metastatic disease but has been recently studied for stage 2 and 3 to improve 3 year cancer free survival) . Does anybody have experience with this? It sounds pretty grisly and I may be in denial but I don't feel in such danger that I need to go through it. Can anyone advise me?
Thanks for being out there. I keep breaking into tears at odd moments and often feel overwhelmed by all this. I thought I was tough and strong and healthy. I spend 50 hours a week nursing HIV patients, for heaven sake. This really knocked my socks off.

georgieboy830
Posts: 1
Joined: Sep 2003

Hi Don,

I am a newbie too, I was diagnosed in Nov 02 and am finished chemo - my diagnoses sounds alot like yours and I am feeling good now and I am sure that you will too. I guess that makes me a semi-colon?
I think I had a more optimistic doc though cause mine said that survival was 85%. Good luck in your recovery.

Georgieboy830

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