Just diagnosed with Stage IV colon cancer

Laugh .. a LOT
Hi TA,

First off, I wish to express my regrets that you've been diagnosed with cancer and you and your family will be in my prayers. The advice that I offer is simply what has worked best for me, I sure hope that it helps you on your new life journey.

When Readers Digest says that laughter is the best medicine, they ain't kidding. Of course the first and strongest impulse is to worry about your family, but you need to be able to put your health to the fore front. And the best way to do that is keep an upbeat attitude. I consider my diagnosis (dx) date as my second birthday, because that's the day that I really learned how to live and enjoy life.

Something else that you need to do, and this may be a difficult adjustment from what you've said about your medical history, is to make note of and let your oncologist know about any changes in your health. If you don't have one already, get a digital thermometer (the forehead kind works best IMHO)and check your temperature any time that you feel hot or cold without some outside influence. Keep track of it so that you know what your average is: mine is 97.1, so I know that if it goes above about 99.6 then I need to start watching it very careful. The standard of 98.6 is just an average and not a specific for any one person.

Something else that you might want to do, depending on you circumstances (we're all different after all) is put together a bag to carry around. In mine, I keep extra meds (anti-nausea, anti-diarrhea, pain, etc.), a snack, bottled drink, incontinence pants and other things that I might need while out and about. Also a chemo-bag will come in handy. A blanket, crackers (they can help with nausea), drink and a book. Some chemo centers offer snacks and drinks, others don't so you may not need the crackers and drink. The meds they give you during treatment might make you sleepy, so you'll want the blanket to keep warm.

Finally, talk to people, don't keep things bottled up inside. In my case, there's really no one that I can speak with face to face about my anxieties and fears, so I've selected seven people to be my confidants via email. This discussion board is another excellent place with very few (if any) taboos. If you want to discuss how difficult it is having a bowel movement, feel free. I'm sure most if not all of us have been there, done that and wore out the t-shirt. You're going to have down days, and what was once normal is now a memory. When they call this a "life changing" event it certainly is so. And this is a great place to open up and you will always find a shoulder to lean on and an arm to put around you. Even if it is only metaphorical, it helps a lot to know that there are others who are going through similar things. To paraphrase the old UFo movies "You are NOT alone."

God Bless,

Doc/Ray

Welcome to the forum...
very sorry you had to join this unique club but now that you're here I think you'll find a lot of support and understanding on this site. Several folks here who have been living with stage 4 cancer for quite a few years, and can provide you with their invaluable perspective on things. And I think it's great to touch base with people who just "get" what you're going through...as a 43 year old mom of three myself when diagnosed, I didn't have many people in my life who had dealt with something as life-changing as cancer. I don't have any real words of advice for you, except to try to take things one day at a time. The cancer experience is a journey, and for myself I've found it best not to look too far down the road. I try to stay focused on the curves right in front of me, and worry about the future when it gets here! Hang in there, and know that things do get better,,,imo, you're in a very challenging part of the journey. I found that once a treatment plan was in place and I was in the process of fighting this monster, I started to feel better emotionally. Sending strength your way-Ann

annalexandria said:

Welcome to the forum...
very sorry you had to join this unique club but now that you're here I think you'll find a lot of support and understanding on this site. Several folks here who have been living with stage 4 cancer for quite a few years, and can provide you with their invaluable perspective on things. And I think it's great to touch base with people who just "get" what you're going through...as a 43 year old mom of three myself when diagnosed, I didn't have many people in my life who had dealt with something as life-changing as cancer. I don't have any real words of advice for you, except to try to take things one day at a time. The cancer experience is a journey, and for myself I've found it best not to look too far down the road. I try to stay focused on the curves right in front of me, and worry about the future when it gets here! Hang in there, and know that things do get better,,,imo, you're in a very challenging part of the journey. I found that once a treatment plan was in place and I was in the process of fighting this monster, I started to feel better emotionally. Sending strength your way-Ann

Our stories are similar. No
Our stories are similar. No prior medical issues. Hardly ever took a tylenol or aspirin. Sorry this has happened. It is quite a jolt, but as others have said, once you get a game plan, it does get better.
Allow others to help and support you. This is a great group here as we know what each other is going through. We discuss anything and everything. As you know, it's one day at a time. Plenty of good times ahead, it just doesnt feel so good right now.
Hugs to you. Thoughts of you and your family......an active family I'm sure

some immune parts
You might want to look at our story [click Tanstaafl]. We use several components that have immunological function, among other functions, that I'd be interested to see your comments sometime: cimetidine, PSK (Coriolus versicolor extract), higher dose vitamin D3.

Perioperative cimetidine, even a little after surgery, is something you might review *today* at the major Life Extension articles (see my links a,b,c) since surgery depresses immune function so much, cimetidine helps tremendously. The only CRC stage IV cimetidine-chemo paper is in Japanese, but it basically increased overall survival time, over 50% up to 100%. Ditto for several other stage IV adenocarcinomas. People with any CA19-9 are the ones that probably benefit from permanent use.

Many here have had their vitamin D3 levels so badly depressed that it took even 10,000-20,000 iu per day to bring their blood levels up to a more optimum level, especially on chemo.

This next month is the most important homework assignment you'll ever have.

pscott1 said:

Welcome to the board.
I think Doc covered it very well. I was diagnosed Jan of 2011 as a Stage II and found out in Feb 2011 that it had spread to my liver; I as well am Stage IV. I went thru treatment last year and into the first part of this year and then had a chemo break from 1/13/12 thru 6/8/12. I now am back on Folfox w/Avastin every 2 weeks. I will agree with Ann as well; this is a journey that will change you as a person. As Doc said, your dx really is your second birthday because you start living your life in a different way. You appreciate a lot more things than you did before; you view a lot of things that normally upset you as petty now. I am 52 and a single mother to 3 girls. My youngest is 11 but trust me...after my dx, I look at her as if she's only 4. Suddenly life is very precious and all the time you spend with your kids, even if they are working your last nerves, are the best times of your life and you just don't want to ever let go of it. I also carry a bag with anti-diahhrea medicine, antacids, anti-nauseau medicine, etc. I used to get sick of people telling me to keep a positive attitude (mainly this advise came from people who don't have and never have had cancer), but there is some truth to it. It brings you closer to feeling "normal"...whatever normal is. This board has been a life saver for me. I have a support group I take my 11 year old to which has helped her tremendously and I meet with survivors and caregivers while she meets with the kids. My 14 year old has group and individual counseling. My 30 year old is my main caregiver and goes with me to all of my doctor appts, scans and treatments. I have my guy that I have been with over 11 years and he is there to help with anything he can; physically and emotionally. Support is huge. Most of all I think the important thing is not to be too hard on yourself. Fight. Do everything you possibly can to win this battle. I believe in the end 'it is what it is' but I also know that I will pray everyday for the strength, courage and ability to fight this with every fiber of my soul. Just know that this is one place you can come and say what you feel and will always get a response that will keep you going. We're all here for you. We'll make it through this together. I have you in my prayers.

My best,

Pam

Support is here
Sorry for having to join this board. However, I belong to a support group and two spiritual groups and the information the kind people on the boards post is very helpful and supportive
I started treatment at Northwestern 10/31/11, after being diagnosed w/stage 4, and an oops we missed something in 2008 statement....
Luckily, I was able to get an appointment from a cancellation. Had to drive down my pathology. It all came together on a Friday and Mon. I had the appointment. It was meant to be and I like my care team.
Emotionally, it is a shock but once you get your appointment booked and treatment plan you somewhat settle into the fighting spirit necessary to rise above this disease.
Stay close as you are with your family, and supportive friends and family members. Sometimes you need someone to just listen to help you sort out all the crazy places your mind goes to.
One of my work friends said, "You are getting a second çhance at life" and as shocking and unfair this disease is it is very treatable and Northwestern is a great facility with highly skilled doctors etc. We are fortunate we can choose them or UIC.
I had to have two surgeries in a short period of time and restarted chemo. Hope to be back at work in August.
Please let me know if I can answer any questions based on my experience there.
We are here for you and take it day by day. We've all experienced a wide degree of the emotions that it takes to keep putting one foot in front of the other and combat this disease.
I am adding you in my prayers and thinking positive outcome Barb

danker said:

TACHILDERS
I'm sorry you had to join our club. I assume you mean Northwestern Univ in Chicago. The Univ of Ariz got me NED(no evidenvce of disease) at age 78. I;m sure they(NU) will take good care of you. ( Don't be afraid(if you can).Best of luck with your upcomming adventure!!!!

Welcome

Welcome to the board. I have referred to both losing weight and finding this forum as my "cancer perks.". You will find a wealth of experience and information here. It seems that no matter what one of us is dealing with another has been there and offers words of wisdom and support.
Finding a good treatment center from the beginning, plus a knowledgeable medical team you are comfortable with, makes the journey much easier.
Many of us have found we learn a great deal about ourselves and discovered strength we didn't know we had. It is the journey none of us would have chosen to make but there are moments of grace, light, consolation (whatever) along the way.

Wishing you well,
Cathleen Mary

brother from a different mother
TA

First i'll share about me...
I was diagnosed around Thanksgiving of 2011.
I had non-hodkins lymphoma 23 years ago, and the last thing in my mind was cancer.
I was 47 at the time and we have four kids. (11, 16, 18 & 20) My wife and I have been married for 23 years.

Live had been humming along at the big family pace.
I was working way too much and quite honestly, not taking good care of myself.

Dec. 18, 2011 they did a colon surgery of the upper transverse colon and gave me a colostomy bag.

Started chemo Not sure of the spelling here... but my list included Folfox 6, Oxalyplatin, Leucavorin and Erbitux.

I had completed 20 weeks of treatments (after 8 treatments they did a CT scan.)
I had (in 2011) nearly 30 tumors (leisons) in my liver.
the cancerous tumor in my liver WAS like big.

the first two oncologists we met with back in late 2011 each had pretty negative attitudes. They talked about survival rates, they asked me if I had "my affairs in order"... basically, they didn't have a lot of hope for a cancer survivor who had cancer before, a large tumor in the colon and 30 mets to the liver.

I fired both those doctors, and continued to look for a doctor who thought i could live and beat this. I found a guy who said "I'll poor chemo on you as aggressively as i can, and i'll do it until you say Uncle... (and he continued with)... are you ready to put everything else aside and fight?

so... on to what you need to do (well, in my opinion and from my 7 months of experience in this area).

Everyone in your family if worried about you. All your friends and family will be praying for you, pulling for you and worrying about you...so, you need to focus on YOU. You're going to need more rest than ever before. I would suggest meditation and focusing on the LIVING and not the Cancer. You might find yourself loosing weight (I lost 35lbs within 3 months.. but i had 25 to lose anyway)... the problem i had for my 11 year old, is that i never went out to buy clothes that fit. But, after 3 months of wearing black sweat pants and dark shirts and sweat shirts... I went out shopping for cloths that FIT me and for colorful clothes. I didn't realize it would have an impact on anyone else... but my little 11 year old was the first to say...... "dad must be feeling better!" it was the colorful clothes that FIT me!

next, read as much as you can about your cancer, and never be afraid to "quiz the doctors". Ask LOTS of questions, and make a notebook of the answers.

as you read a lot about your cancer, don't believe everything.... especially those 5 year survival rates... that data is already 5-8 years old!!!

next, when you feel good... do something with your family and kids.
when you feel crappy... let them do something for you or with you... maybe play a game or something.
next, ask your kids if they have questions and if they want to talk. Only one of mine would open up to me about how they felt, but the all opened up to their mom which was good.

next, be in awe of what's about to happen within you, within your family and within those hearts of the kid-o's and their friends.
my kids ordered some of those rubber wrist bands... they said "I'm in Joe's Corner".
A friend gave me a set of boxing gloves and he told me that everyone is in "Joe's Corner"
and all my kids friends wear those blue wrist bands. And, my kids give them away regularly.

next... Caring Bridge. Check it out and sign up.
here's my site: http://www.caringbridge.org/visit/joemetzger

sign up here: http://www.caringbridge.org

this is a great way to share your story with others... and to take an opportunity to share your emotions, thoughts, concerns with others... without having to repeat the same story all the time. You do not need to be the author of everything... my sons wrote a couple of the posts and it was very well received by all friends and family.

your life has changed.
now its up to you to make this change the BEST possible experience for you and for all around you.

If you're scared or frightened... save it for your alone time or when you're with the closest people to you. For me, I didn't let very many people know how scared i was... i wanted to help support them, as they were supporting me and "lifting me up" with their prayers and their giving of their time and attention to help me and my family.

It's been an amazing experience... but i wouldn't wish it on anyone else.... but this has made me stronger, and my family closer than before.

Life has given you Lemons... now its time for you to see the outcome from those lemons. will you just have lemons in front of you, or will you be able to see the Lemon-aid? the Lemon-Aid stands? the Water, the sugar, the ice, the beautiful kids selling the lemon-aid? and then will you be able to see the franchising opportunities of your special lemon-aid stands?

take this bad experience and make it the best you can make it.
be the leader in your family and have the most positive attitude you can have... because a positive attitude, laughter, prayers and living life to the fullest is the best thing you can have around you while the chemo is doing its job.!

for me... my 30 tumors in my liver, have reduced to 3!!!!!
my tumor in my colon is considered "dead tissue"

i am on a break from chemo and they will be removing the colostomy back and re-connecting my colon in a surgery that will occur in early July. It's been a real roller coaster ride these past seven months... but it's been a life changing event that i hope to share with the world and hope to make life better for everyone around me.

be positive.
laugh.
live.
love!
(oh yeah.... Read, Pray, Sign & Dance whenever possible!)

you are in my prayers.

be the best you can be.

my best to you

Joe

Welcome
to this journey nobody wants to travel...

You found the right place for answers and support. I'm caregiver to my husband with stage iv CC and I'm so glad I found this community with so much wisdom and so many nice people.

Greetings from far away Germany
Petra