Hello

jalusa

I have been reading these posts for some time and decided maybe I could find some help.

I was diagnosed Stage IV colon cancer with mets to my liver in December 2014.  My port was put in 12/24, a gift.  I am 51.

I am doctoring at Mayo.  

I had 3 rounds of folfox.  A liver surgeon at Mayo has studied my images and has now started me on 4 rounds of folfoxiri (2 down).  If the cancer responds well the plan is to do a portal vein embolization followed by liver resection and surgery on the bowel all at once.  Hopefully this will work out as planned.  BTW, this is the course that Hermain Cain (Pres candidate) took.

I have tolerated the chemo OK.  I did spend Monday - Wed this week in hospital with a bowel obstruction.  I am now on a strict diet so that we can hopefully proceed with the original plan without interupution.  

I have 3 sons, two out of the house and an 18 year old at home.  My wife has been a soldier.  

Reading the posts here makes me feel like an infant.  I simply cannot get my arms around the one day at a time thing.  Sometimes I feel like I am already dead and gone.  I have seen a phychatrist and have been prescribed meds for depression and panic.

I really need to live while I am alive.  

How do you do it?

danker

Living

I did it by assuming all would work the way it should. and it did!!! Today I am 5 years down the road and NED.  Don't be afraid! Have faith in you doctors and perhaps you will one day be telling someone else how you became NED(no evedence of disease).

Trubrit

Welcome and sorry...

that you have had to join us. Its a wicked diagnosis, and it really does take a little time to get your head around. 

You ask how we 'do it' meaning taking it one day at a time, and trying not to leap ahead to the worst senario. Well, I have one answer, and I'm sure others will help out with their own answers. 

I would say to you, be good to yourself, you are still new in the game. I doubt any of us 'old timers' were good with it for a long time.

I think of it as a little death. We have lost a part of our lives that we will never get back. No matter how many NED's we get after our treatments, we will still be Stage IV Cancer patients, and it will always be there before us, waiting. Maybe one day it will take us, maybe not. 

So, don't fret that you are still scared to or of death. Work at taking it one day at a time, and pretty soon you will realize that you are taking it one day at a time. 

I hope you plan to join us often. We love having new folks who then become 'old timers' with us. 

Sue - Trubrit

 

jalusa

Trubrit said:

Welcome and sorry...

that you have had to join us. Its a wicked diagnosis, and it really does take a little time to get your head around. 

You ask how we 'do it' meaning taking it one day at a time, and trying not to leap ahead to the worst senario. Well, I have one answer, and I'm sure others will help out with their own answers. 

I would say to you, be good to yourself, you are still new in the game. I doubt any of us 'old timers' were good with it for a long time.

I think of it as a little death. We have lost a part of our lives that we will never get back. No matter how many NED's we get after our treatments, we will still be Stage IV Cancer patients, and it will always be there before us, waiting. Maybe one day it will take us, maybe not. 

So, don't fret that you are still scared to or of death. Work at taking it one day at a time, and pretty soon you will realize that you are taking it one day at a time. 

I hope you plan to join us often. We love having new folks who then become 'old timers' with us. 

Sue - Trubrit

 

Thank You

for the responses.  Every so often I seem to grasp it... then it slips away.  It is hard on my wife and family.  I am not really "there".  I am a different person.  

janderson1964

Sorry you have to be here. It

Sorry you have to be here. It sounds like you surgeon has a very good plan of attack. You are a different person now and will never fully transform back into your former self. It is extremely hard on close family members as well and the whole thing can be very hard to grasp at times. I have been stage IV for 9 1/2 years now and have had more surgeries, scans, chemo, radiation than I ever would have imagined but I am still here with at times a very good quality of life. I understand your feelings of infancy. I still remember the early years like it was yesturday but before I know all of these years passed by and I have lived a very colorful life in spite of cancer. Mountain biking, whitewater rafting and kayaking, and now I have a Harley that I ride 4 0r 5 days a week even in the winter. Keep your chin up although easier said then done and keep fighting.

jen2012

One day at a time..such a

One day at a time..such a hard thing!  Easier to wrap my head around now than when my husband was first diagnosed 2 1/2 yrs ago. Took a long time and first few months and after (during) recurrence, it was really difficult.  Other times we do manage to live almost like normal people...those damn normal people that just don't understand.  The ones that plan for vacations, kids going to college, retirement.   

You will see though, if you read a lot of posts that some people do manage to do well with stage 4.  Hopefully you will be one of those people.  I would try to plan on it!

Keep in mind that the meds you take may be altering your normal personality also, especially if you are taking steroids before and after chemo.

lp1964

Dear Friend,

The mental aspect of handling chronic diseases is just as hard as the physical. Just remember that you are the same guy as you were before you were diagnosed and you have the same skills, wisdom, kindness and abilities, you just happen to have cancer. There is a lot of stigma around cancer still. It's a crap shoot, but so is driving down the freeway at 75 or skiing on a steep slope.  You can do well and not so well. Just do the next thing you have to and don't stop living. No matter how bad this is the only life you got.

keep us posted and wish you the best possible outcome.

Laz

NewHere

Welcome

Sorry you are part of the club, but a good place to be here.

It is really rocky with the ups and downs, but I am just working on being as postive as possible, including making some bad jokes to my docs and nurses.  Like can I pump whiskey through my port  

There are sometimes when I get down, but it seems to be right when the next step comes in terms of about to get surgery (like some minutes away), but for the most part it is fleeting.  Instead I try to find something to do that I like.  Right now, for me, March Madness Hoops are keeping me occupied.  And though I had one day of tired, today was good with some extra sleep so ran around and did things.  Grabbed my camera and looked to see if there were any birds around to take a couple of shots.  Things like that.

Everyone here has gone through a wide range of the same emotions, the fear, can we knock it out, when or if it will come back and how the heck did this happen, along with a slew of others.  A lot of good advice from the people who are further along than me.  (I just had my first chemo about 5 weeks after surgery.)  Good people here and they have helped me.

Hang in there.....

marbleotis

Hi and Sorry you are here

One day at a time in the beginning works well because you have so much coming at you.  First of that being disbelief.  I was 49 when I was Dx'ed with stage 3 signet cell cc. 

That was 3 years and 3 months ago.  Trust me I know how you feel.

I changed my diet to all organic and I am getting alot of good exercise.  I also recommend yoga, for you and your wife.

Personally, I never went the route of psy meds.  It was not right for me. 

I knew I was a stubborn fighter type A personality, and wow was I right.

Please trust me when I say you are stronger then you know.

Kick cancer in the a$$.

I have learned not to bother with small petty stuff and to be happy, really happy.  If something/someone in my life does not contribute to that formula, then bye bye to them.  My health is paramount!

Please keep posting

TheLadySkye

Outreach

I'm glad you decided to reach out here.  I feel like it was just last week that I wandered in here - scared and uncertain and with a ton of questions and some support, but certainly not the kind that "got it."  It was one of the best things I could have done, and I hope you will find the same.  Internet research, statistics, overly busy doctors...nothing can talk you through the questions and the things you feel like the people who have been there. 

It also so happens that this is one of the most amazingly wonderful groups of people you will ever meet.

I'm sorry you have to face this challenge.  It sucks.  Be angry.  Allow yourself to be scared or cry when you need to.  Know that the anxiety and feeling of being overwhelmed is normal.  I'm not gonna lie, it's brutal.  But Light-willing, it doesn't stay that way forever.  As you proceed through treatment, you'll realize that you're not just an innocent bystander.  You're an armor-clad warrior doing everything you can to kick it in the teeth. Be good to yourself.  It's a fight, but you're totally worth it.

And if you need to talk about pretty much anything, we're here.

*hugs you to itty bitty pieces*

tanstaafl

Sounds like you don't feel real hope yet. Stage IV liver mets are a doable diagnosis these days. To me, this means find more answers from credible people (patients, drs, researchers) and papers. There are more answers where standard medicine offers 1-2. The more answers you get on deck early on, the better you'll do and have backup. 

For your situation, you might read the Life Extension articles on cancer, cancer surgery and colon cancer, get more blood tests for a baseline, look into chemosensitivity testing of live tumor samples (Rational Therapeutics and Weisenthal Group) for when you get surgery, and line up more consults perhaps like MSKCC on Hepatic Arterial Infusion.

           

Annabelle41415

Welcome and Sorry

Welcome to our group and so glad that you found us.  We can help you so much with trying to help you get through all the roller coaster ride that you will be going through for several months to come. 

Hoping that the treatment and surgery will help you become cancer free.

It's hard to wrap yourself around all of this and it really just does take one day at a time.  Just keep asking questions here and your doctor's as well. 

Wishing you well.  Kim

Easyflip

We are all

works in progress every day no matter what happens to us. Kudos to you for being proactive and seeing a psychiatrist, getting meds and coming here. We all have dark thoughts from this disease, that is just a sad fact. The trick is to get out of them as soon as they begin and not to dwell there. Your mind is stronger than you think, you can choose to be positive  (sometimes hard I know) and your feelings will follow. We make a choice what cancer is going to do to our spirit. Don't let it win!

Some things make me happy, good food, laughter with friends, exercise, my kids, my dog, painting etc. I fill my time with that and stay busy. This weekend I'm going to A's baseball spring training in Arizona, I cannot be grumpy in beautiful weather hanging out with my buddies!  I'm 2 years since my diagnoses and I can tell you it gets better. Hang in there my friend!

Easyflip/Richard

 

sflgirl

tanstaafl said:

Sounds like you don't feel real hope yet. Stage IV liver mets are a doable diagnosis these days. To me, this means find more answers from credible people (patients, drs, researchers) and papers. There are more answers where standard medicine offers 1-2. The more answers you get on deck early on, the better you'll do and have backup. 

For your situation, you might read the Life Extension articles on cancer, cancer surgery and colon cancer, get more blood tests for a baseline, look into chemosensitivity testing of live tumor samples (Rational Therapeutics and Weisenthal Group) for when you get surgery, and line up more consults perhaps like MSKCC on Hepatic Arterial Infusion.

           

Tagamet?

thanks for the Life a Extension article.  I'm having a liver resection on 3 tumors in about 6 weeks.  Just finished 3rd chemo with Avastin, one more Folfoxiri without Avastin then planning 4 weeks after that chemo the surgery.  I read the info on Tagamet.  Any opinion on how soon to start it ( the article said 800 mgs/day) before surgery and then after?   Also is there another common name for citrus pectin?  Where I might get it? 

Thanks,

Andrea

Steve444

sflgirl said:

Tagamet?

thanks for the Life a Extension article.  I'm having a liver resection on 3 tumors in about 6 weeks.  Just finished 3rd chemo with Avastin, one more Folfoxiri without Avastin then planning 4 weeks after that chemo the surgery.  I read the info on Tagamet.  Any opinion on how soon to start it ( the article said 800 mgs/day) before surgery and then after?   Also is there another common name for citrus pectin?  Where I might get it? 

Thanks,

Andrea

Citrus Pectin

Andrea, The Citrus Pectin I use off and on is by ecoNugenics, called PectaSol-C - Modified Citrus Pectin.  It was recommended to me from someone (and sold) at a local Earth Origins market in SW Florida.  It wasn't cheap.  I'm sure they have it and other brands at various organic markets with a decent sized supplement department.

sflgirl

Steve444 said:

Citrus Pectin

Andrea, The Citrus Pectin I use off and on is by ecoNugenics, called PectaSol-C - Modified Citrus Pectin.  It was recommended to me from someone (and sold) at a local Earth Origins market in SW Florida.  It wasn't cheap.  I'm sure they have it and other brands at various organic markets with a decent sized supplement department.

Thank you

I'm in S. Florida so near enough, also just found it on Amazon.  Thanks.

herdizziness

Stages

You will find yourself going through some stages when first diagnosed and trying to figure out this life and death thing.  There is no figuring it out though, you just have to run the gambit.  First is disbelief, then you start thinking about the dying, so while you're thinking about that, do something constructive, make sure your wills are up to date, that letters have been written to loved ones and even write your own obituary.  I wrote mine, it really helped a lot with turning me around to think about living a bit more, didn't want it to end.

That was FIVE years ago for me, since then I've done a lot of living.  One day early on the diagnosis, my son said to me, "Mom, you're sitting here in the yard getting ready to die, get up and do something, go to college, find more exciting things to do, get up and live".  So I went to a two year college, during chemo's, surgeries even a heart attack and having a stent put in and graduated with a 3.8 GPA in Political Science in the two years.  I bought a kayak and go kayaking, picked myself up a little 650 motorcycle again and started biking, take my Grandkids camping, in other words, I got off my arse and started living.  I don't know how long I have, heck they had me call in family last August to say their goodbyes, and here I am in March getting ready to turn another year older, working full time this month at my daughter's candle, body, bath works shop at the mall, taking my grandchildren around places, shooting my new gun and just plain enjoying myself, and still getting chemo every two weeks.

You can do this, just have to start having the will to live and stop thinking about that dying crap.

Wishing you the best,

Winter Matir

jen2012

herdizziness said:

Stages

You will find yourself going through some stages when first diagnosed and trying to figure out this life and death thing.  There is no figuring it out though, you just have to run the gambit.  First is disbelief, then you start thinking about the dying, so while you're thinking about that, do something constructive, make sure your wills are up to date, that letters have been written to loved ones and even write your own obituary.  I wrote mine, it really helped a lot with turning me around to think about living a bit more, didn't want it to end.

That was FIVE years ago for me, since then I've done a lot of living.  One day early on the diagnosis, my son said to me, "Mom, you're sitting here in the yard getting ready to die, get up and do something, go to college, find more exciting things to do, get up and live".  So I went to a two year college, during chemo's, surgeries even a heart attack and having a stent put in and graduated with a 3.8 GPA in Political Science in the two years.  I bought a kayak and go kayaking, picked myself up a little 650 motorcycle again and started biking, take my Grandkids camping, in other words, I got off my arse and started living.  I don't know how long I have, heck they had me call in family last August to say their goodbyes, and here I am in March getting ready to turn another year older, working full time this month at my daughter's candle, body, bath works shop at the mall, taking my grandchildren around places, shooting my new gun and just plain enjoying myself, and still getting chemo every two weeks.

You can do this, just have to start having the will to live and stop thinking about that dying crap.

Wishing you the best,

Winter Matir

Great post Winter!  I'm

Great post Winter!  I'm printing it for my husband...heck I may just hang it on the fridge! 

lp1964

sflgirl said:

Tagamet?

thanks for the Life a Extension article.  I'm having a liver resection on 3 tumors in about 6 weeks.  Just finished 3rd chemo with Avastin, one more Folfoxiri without Avastin then planning 4 weeks after that chemo the surgery.  I read the info on Tagamet.  Any opinion on how soon to start it ( the article said 800 mgs/day) before surgery and then after?   Also is there another common name for citrus pectin?  Where I might get it? 

Thanks,

Andrea

Hi Andrea,

800mg/day for 2 weeks after surgery. Some say more and and longer for Stage for patients. Email tanstaafl here on the forum, he is the most knowlegable about these things.

Good luck.

Laz

Trubrit

herdizziness said:

Stages

You will find yourself going through some stages when first diagnosed and trying to figure out this life and death thing.  There is no figuring it out though, you just have to run the gambit.  First is disbelief, then you start thinking about the dying, so while you're thinking about that, do something constructive, make sure your wills are up to date, that letters have been written to loved ones and even write your own obituary.  I wrote mine, it really helped a lot with turning me around to think about living a bit more, didn't want it to end.

That was FIVE years ago for me, since then I've done a lot of living.  One day early on the diagnosis, my son said to me, "Mom, you're sitting here in the yard getting ready to die, get up and do something, go to college, find more exciting things to do, get up and live".  So I went to a two year college, during chemo's, surgeries even a heart attack and having a stent put in and graduated with a 3.8 GPA in Political Science in the two years.  I bought a kayak and go kayaking, picked myself up a little 650 motorcycle again and started biking, take my Grandkids camping, in other words, I got off my arse and started living.  I don't know how long I have, heck they had me call in family last August to say their goodbyes, and here I am in March getting ready to turn another year older, working full time this month at my daughter's candle, body, bath works shop at the mall, taking my grandchildren around places, shooting my new gun and just plain enjoying myself, and still getting chemo every two weeks.

You can do this, just have to start having the will to live and stop thinking about that dying crap.

Wishing you the best,

Winter Matir

Winter Winter, your name should be Spring or Summer...

because you bring so much light into our lives.  (Winter is good too, I love Winter.) 

This is a wonderful post. I just read your other post about drinking cold water, and I wanted to aks you to open a new thread with that. And now I read this post, and I want to ask you to open up a new thread with this. Maybe we should have a Winter's Thread, because you have so many wonderful things to share.

When we use words like Warrior, Survivor, I belive you epitomize those words. 

Thank you!

Sue - Trubrit

sflgirl

lp1964 said:

Hi Andrea,

800mg/day for 2 weeks after surgery. Some say more and and longer for Stage for patients. Email tanstaafl here on the forum, he is the most knowlegable about these things.

Good luck.

Laz

Great, thank you

i have read his stuff here and very impressed.