The Colon Club

Noticed a few nice NED posts recently on the forum. I know there are old threads on stage 4 survivors. Been feeling some anxiety lately, over the future and the uncertainty of it, etc. I'm sure most of you here know what I mean. Just thought a fresh thread for long term stage 4 survivors would be a good idea. On a personal note would like to hear from any long term survivors who've been treated with FOLFOX plus Cetuximab (Erbitux). Anyone?

I understand the anxiety.
I don't Exactly Fit in with your group because I became a Stage IVa 3 years after my original dx which makes me Oligo-recurrent and I only had one small liver met at that time, so a quick hepatic resection and NO CHEMO after the resection. NED again since April 11th, 2012.

My anxiety is not as severe as it was after my recovering from the resection (full and open) with NO pain meds but it's taken 3 years to slightly calm down. I take anxiety medication like a vitamin every morning.

I have blood work March 23rd, a CT w/o and MRI in early April and get the results the next week. For the month before the tests and the week awaiting the results, I'm mush. For the first two years, I'd be at the walk in clinic up to 3 times a week with an imaginary illness. That seems to have passed, tho I will worry about little things and wait it out. I'm talking some pretty stupid stuff, too.

Some days I have to repeat 'Cancer may kill me, but not today'. Other days I spend hours listening to praise music or southern gospel on Youtube.

The stats can help me focus. Single small met. Under 3 cm. More than 2 years post dx. No co-morbidity. Low CEA, etc..........

I read a new paper about 3 weeks ago that said at 6 years 48 days post HR, a patient has ZERO % chance higher than the general population of having cancer. My onc told me that at 5 years post HR, he will release me and consider me cured. I can continue with CEA's every 6 months with my primary since my CEA went to 4.4 then 6.4 when I had the met. Very sensitive CEA so anything that popped up after that would be caught, hopefully, very early.

Anxiety is horrible. Anxiety can cripple you and steal ALL your joy. I lost interest in everything. I stopped making nice meals, keeping the house spotless, gardening, crafts, reading. I spent many days Googling and reading. Now I avoid Google except for pretty pictures for my daily blog. NO NEWS. No Dr. Oz. No medical shows at all. Avoid all negativity and realize that I'm 64 and plan on living to be 103 so I need to get on with life.

Hi,
My diagnosis seems similar to yours. I had a right hemi and liver resection (gall bladder, appendix, illeocal valve gone too) 3 weeks after diagnosis. Then I had 12 cycles of FOLFOX plus Avastin. Additionally, I participated in a 4 month Phase 1 vaccine trial.
I've been NED since surgery in August 2010 and I really don't have any residual side effects from the surgery or chemo. For me it was very important to keep my life as normal as possible. Continuing to work and stay active through treatment was absolutely the best choice for me as it gave me something to focus on outside cancer. I have a desk job so continuing to work was very doable. I have not changed my eating or drinking habits. The only thing I've added is an aspirin a day.
My scan 2 weeks ago was clean and my CEA < 1. I've been very lucky.
Best of luck to you as well.

I was diagnosed on July 22, 2004. Easy to remember that day, it was my 43rd birthday.

I was given six months to live but told I could die at any minute. While I was driving around to get my medical records to go to a top notch hospital, a car tried to pass me on the shoulder in heavy traffic and hit me, rendering me transportationless when I needed to head out of town.

Here I am, 53 + years old. I stopped all chemo in 2005.... I'm still NED after all these years.

The good news is, not only did I have the worst day of my life, I had the worst birthday in my life. Everyday is a blessing after that day.... So far, knock on wood, no day has been as bad as that one.

Glad to be alive!!!

cptmac wrote:I was diagnosed on July 22, 2004. Easy to remember that day, it was my 43rd birthday.

I was given six months to live but told I could die at any minute. While I was driving around to get my medical records to go to a top notch hospital, a car tried to pass me on the shoulder in heavy traffic and hit me, rendering me transportationless when I needed to head out of town.

Here I am, 53 + years old. I stopped all chemo in 2005.... I'm still NED after all these years.

The good news is, not only did I have the worst day of my life, I had the worst birthday in my life. Everyday is a blessing after that day.... So far, knock on wood, no day has been as bad as that one.

Glad to be alive!!!

I hope to have the same luck as you did cptmac. Awesome survivor story. By the way you have the exact same handle as someone on another forum I frequent (a watch forum). I don't suppose that's you?

susanh wrote:Hi,
My diagnosis seems similar to yours. I had a right hemi and liver resection (gall bladder, appendix, illeocal valve gone too) 3 weeks after diagnosis. Then I had 12 cycles of FOLFOX plus Avastin. Additionally, I participated in a 4 month Phase 1 vaccine trial.
I've been NED since surgery in August 2010 and I really don't have any residual side effects from the surgery or chemo. For me it was very important to keep my life as normal as possible. Continuing to work and stay active through treatment was absolutely the best choice for me as it gave me something to focus on outside cancer. I have a desk job so continuing to work was very doable. I have not changed my eating or drinking habits. The only thing I've added is an aspirin a day.
My scan 2 weeks ago was clean and my CEA < 1. I've been very lucky.
Best of luck to you as well.

Congrats on being NED for so long. I am trying to continue with my normal life. And believe or not on good days I forget I have "it". But of course whenever chemo time comes up its a different story. The little thing I miss most right now is that occasional beer or glass of wine. One day maybe.

dianetavegia wrote:I understand the anxiety.
I don't Exactly Fit in with your group because I became a Stage IVa 3 years after my original dx which makes me Oligo-recurrent and I only had one small liver met at that time, so a quick hepatic resection and NO CHEMO after the resection. NED again since April 11th, 2012.

My anxiety is not as severe as it was after my recovering from the resection (full and open) with NO pain meds but it's taken 3 years to slightly calm down. I take anxiety medication like a vitamin every morning.

I have blood work March 23rd, a CT w/o and MRI in early April and get the results the next week. For the month before the tests and the week awaiting the results, I'm mush. For the first two years, I'd be at the walk in clinic up to 3 times a week with an imaginary illness. That seems to have passed, tho I will worry about little things and wait it out. I'm talking some pretty stupid stuff, too.

Some days I have to repeat 'Cancer may kill me, but not today'. Other days I spend hours listening to praise music or southern gospel on Youtube.

The stats can help me focus. Single small met. Under 3 cm. More than 2 years post dx. No co-morbidity. Low CEA, etc..........

I read a new paper about 3 weeks ago that said at 6 years 48 days post HR, a patient has ZERO % chance higher than the general population of having cancer. My onc told me that at 5 years post HR, he will release me and consider me cured. I can continue with CEA's every 6 months with my primary since my CEA went to 4.4 then 6.4 when I had the met. Very sensitive CEA so anything that popped up after that would be caught, hopefully, very early.

Anxiety is horrible. Anxiety can cripple you and steal ALL your joy. I lost interest in everything. I stopped making nice meals, keeping the house spotless, gardening, crafts, reading. I spent many days Googling and reading. Now I avoid Google except for pretty pictures for my daily blog. NO NEWS. No Dr. Oz. No medical shows at all. Avoid all negativity and realize that I'm 64 and plan on living to be 103 so I need to get on with life.

Thanks for the advice. Yes anxiety sucks. Have had insomnia lately. Might consider giving up googling as well.

Hey Plastikos

I used to visit several forums.... Now I only visit this one on occasion. The others I visit if someone draws me in.

If you let me know the forum, I could tell you if it was me.

This is somewhat of a common handle. I was a Captain in the military, CPT is short for Captain. I'm half irish and my last name starts with Mc.... thus the cptmac handle.... But a lot of Mc's join the military.... so when I can't get cptmac.... I go to cptmac 22.... 22 for the day of my birthday...

I wish you and everyone on this board the same luck as me.... These 10 years have gone by so fast and I've accomplished so many amazing things.... What I consider amazing might be so boring to someone else..... But I'm glad I didn't miss a second of it....

Here's to all of us making it, and living to an old age and dying of something else......

I hope to have the same luck as you did cptmac. Awesome survivor story. By the way you have the exact same handle as someone on another forum I frequent (a watch forum). I don't suppose that's you?

Letting you know I'm still around after dx in May 2010. NED since 11/11.

I had two large liver mets that required the removal of entire right lobe and a 7mm lung met was removed with VATS six months after initial chemo was completed. More details can be searched in my old posts.

No Erbitux for me, so no help to you there.

The anxiety is normal, of course, and I did as you did (and still do) seek out survival stories. Googling was of no help but I kept torturing myself.

Honestly, looking back, I believe I was completely out of my mind for the first three years and used Lunesta to sleep and the occasional Xanax for scanxiety.

FWIW a fellow stage fourer (who doesn't come around here) was diagnosed in 2009 and just had a clean scan. He's also had a VATS a year or so after liver resection. He feels well and works full time.

I scan again in a couple of months and hope and pray for continued NED. The onc whispered that maybe we could discuss port removal at that time. Never did I think I'd be discussing such a thing.

Maybe I'll survive this cancer. Maybe you will too.

Best to you,
N

I understand the anxiety, seems our brains don't know when to shut the "F" up. I'll admit to using the occasional xanax to get to sleep (sometimes more often). It works for me and doesn't seem to cause any dependency or morning "hangover" in my case. I don't know if my signature will be exactly encouraging, but I've been kicking the beast's butt since 2008 (pun intended).

Connie K.

Hang in there. My mom has had two, year long NED stretches. She is currently on chemo...supposedly her last tomorrow. We shall see. Diagnosed May 2011. We all live life and cancer does not rule her. It is possible to enjoy life. She does.

Thanks for all the replies. As you all know there are good days and bad days. I'm currently in the hospital for a round of chemo now.

I haven't been on this site in a while. But wanted to reach out. please read my signature. I have been ned for 9 1/2 yrs.
I have a few friends clean for 5 plus yrs, stage 4 ,that have never done online. I hope that gives you some hope, good luck.

Yes stage IV sucks, but what can you do? I was treated with Folfox and Avastin. It was not fun and I'm still having side effects that are keeping me from living the same life that I had before cancer. After my txt's I was hospitalized for some major lung issues and that is when I started having anxiety attacks. These are very disturbing when they happen. I really feel like I am going to die. My onc wanted me to see a Psychiatrist in hopes they could find some meds that would work but they couldn't find anyone in my area. I still get them although not as bad as when they first arrived thank goodness. I can feel them when they are coming on and if I start to breath slowly and relax my body I can get through them. It's not fun, but I can get through them.
Tammy

Dress In Blue Girl wrote:I haven't been on this site in a while. But wanted to reach out. please read my signature. I have been ned for 9 1/2 yrs.
I have a few friends clean for 5 plus yrs, stage 4 ,that have never done online. I hope that gives you some hope, good luck.

It does. Thanks.