Hi I am new to the Board.....and scared

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HeidiMarie
Posts: 8
Joined: Sat Apr 15, 2006 7:19 am

Hi I am new to the Board.....and scared

Postby HeidiMarie » Sat Apr 15, 2006 7:42 am

Hi,
My name is Heidi, I am 32yr old and I was diagnosed with colon cancer stage IV, in November 05, I had colon resect surgery in Dec (no colostomy), found that it had spread to my liver. :( . In Jnuary when healed enough I started Chemo but not before they did a "petscan" and another CT, where it showed that I have 11 spots on my liver and a lymph node near where they took out my colon and another lymph node near my right ovarie that are both cancer. They thought that my right ovarie was caner but could not tell, in feb when I had my first ct scan again after starting chemo, it showed the spots to all be shrinking and lymph nodes, the ovarie they said does not appear to be canerous after all just a cyst. whew... :? ..I am on avastin, oxyplatin, lucovorin and 5-fu and I come home on an IV for an additional 46 hours. I have Chemo every 12 days, with it being this monday coming up. I am so scared :( all the time, everyone says the statistics are outdated. How long have you all been living with stage IV, for the ones out there with it. I am worried all the time again more so cause scans are coming up again on the 4th (the day after my Birthday). I hope to get through this I have 3 children and wonderful Husband, our son together was born 18 months ago and I just want to see him grow. My other two are 14 and 11 and they are taking this so hard, I have them both in counsling. Well I hope to hear from everyone and get to know you all very soon.
Heidi Marie

Guest

I understand

Postby Guest » Sat Apr 15, 2006 11:53 am

Hi Heidi
The way you are feeling is completely normal. I was diagnosed with Stage IV C April of 2005, when I was 42 years old. When the doctors discovered it, it was full blown-lungs, liver, abdomen (basically 22 of 36 lymph nodes positive for metastatic adenocarcinoma).

I have been on the same chemotherapy regimen since April of 2005, and am greatful that it is still working-lymph nodes are dying, tumors in liver shrinking- CEA 2.7, was 26 when I was newly diagnosed.

I have a small area in my back which I may have treated for radiation, but the pain is not new-I had it for quite some time before the doctors recommended an MRI to determine if it was C.

DO NOT LOOK AT THE STATISTICS-THEY ARE MISLEADING

I'll be thinking about you and wishing you the best

Rochelle

Terry Miller
Posts: 72
Joined: Mon Sep 19, 2005 12:45 pm

Scared

Postby Terry Miller » Sat Apr 15, 2006 10:44 pm

Heidi,
First, I cannot pretend to know how you feel. I did know the fear of having a tumor but my blessing was that I was at Stage 1. All I can do is to encourage you to read the stories of the Stage IV survivors on this website. The statistics are so misleading. More and more is being done every week to help our member live. Remember, you are not alone as you face the beast. You have so many new friends that will support you as you move through the recovery process. Keep this site as a favorite and refer to it often. I'm sure that you will find peace and hope from our members.
Take care and be healthy....that is an order!!
Sincerely,
Terry

Mike C

Postby Mike C » Mon Apr 17, 2006 10:45 am

Hi,
I fully understand where you are coming from, I was diagnosed with Stage 4 cc with mets to the liver also, 13 of 29 nodes showed positive,
in may of 2004, resected same day due to total blockage, started chemo in july of 2004, went into remission in nov of 2004. Cancer came back in the liver in April of 2005 back into remission in Jan o6 and still working to stay there, My first round of chemo was oxioplatin avastin lucavorin and 5fu, second round was comptsar and avastin and lucavorin and 5fu, seem to be doing real good now except might have an ulcer so going in for upper and lower scopes to see, if ulcer is not the problem could be adhessions from my first surgery, hope not but just like everthing else we will deal with it, there is always hope and its normal to be scared, but never give up, i decided when i got sick it might get me but it will never beat me.
all my prayers and hopes
mike c

Fishy
Posts: 42
Joined: Mon Oct 24, 2005 3:04 pm
Location: Portland, Oregon

Postby Fishy » Mon Apr 17, 2006 2:42 pm

hi heidi, i am a stage iv and i was first hospitilized in june of 2002.i have had two surgeries and i'm on , i think, chemo #52 or #53. i have also been working full time the whole time. it has not been easy by any means, i have to eat good and exercise every day to keep up.i do know that the being scared part gets less and less the more you educate yourself. but don't dwell on the statistics, learn information and options, not outdated statistics.good luck and stay positive.
Jenny Fish

Dana
Posts: 67
Joined: Tue Mar 21, 2006 3:39 am
Location: Italy

Postby Dana » Mon Apr 17, 2006 3:40 pm

Heidi,
You are not alone. And you can make it. i can assure you that so many stage IV are surviving and are cured now even here in Italy.
You are young and a fighter and you CAN pull through. Statistics are not right and this forum can proove you that. I lost my mother but it was too late for her. Please be positive and you are in my prayers.
Love
Dana

meighan
Posts: 65
Joined: Wed Apr 19, 2006 12:31 pm

Postby meighan » Wed Apr 19, 2006 12:46 pm

hi there, i am a 35 year old mother of 3. my husband was just diagnosed march 13th with stage 3 with 4 lymph nodes involved. he had surgery on april 11 and we are being discharged tomorrow. he will do 6 months of chemo. i have been doing all the research and i have to say i hear alot of positive remarks from survivors..........i am scared as well but need to educate myself on all the treatments. we are at memorial sloan kettering in nyc and i would highly recommend them over a local hospital, if not them then a cancer specialty hospital with all the newest treatments. learning all the drugs is somewhat overwhelming but necessary..........i have a long way to go on this. my kids our ages 7,5 and 7 months and we have told them very little, what kind of counseling are your kids in??? no idea what to tell them. we are also looking into the genetic testing as this runs in families but the good news is we can protect our children with early screening, keep the faith we can get through this just look at all the survivor stories and pray we will be among them some day. take care.

Steve
Posts: 7
Joined: Thu Jan 19, 2006 2:45 pm
Location: Anderson, SC

Scared

Postby Steve » Wed Apr 19, 2006 10:12 pm

Hello, Heidi and Meighan welcome
Do not be scared. Cancer is only a word. My wife Nancy Heathcott Lopez is living with stage IV colon cancer. It has spread from her colon to her liver. She has many spots on one lobe of her liver and the other side is almost all tumor. The chemo has not reduced the size at all and now it has spread to her lungs. We are on the second type of Chemo. She recieved the full treatment of Fol Fox 5 and her CAE count went down from over 318 to 78 then it started to go up again. Her CAE got up to 130 before changing to the chemo she is on now. Her count was down to 11.5 around christmas but she decided not to take her nasty chemo as she calls it (CPT-11) over the Christmas holiday and then again she skipped one before we went to get a SIRT's treatment to her liver. SIRTs' = Selective Internal Radiation Therapy. Her CAE count jumped to 139 again. As of two weeks ago her Count was 70 and she has had a nasty treatment since that. She has a remakable spirit and I love her for that. She never complains and we remain positive. Doctors are only men and only God knows what is in store for us. She does what she wants most of the time and contuies to work. So keep your head up and live life each day. God never promised us tommorro. We have been blessed. We have meet so many good people on this site and at the Colon Cancer Alliance convention last Oct. There are many of you out there now living with this. The reseachers are comming up with new stuff everyday. So my point is Cancer is only a word Keep your head up stay positve it is so important and live life each day to the fullest you can. Any of you may contact me at anytime. We all need each other God bless and take care.
Steve
Stay Positive!!!

User avatar
Billy
Posts: 69
Joined: Thu Oct 20, 2005 12:35 pm
Location: Bayonne, NJ/New York City
Contact:

Hope it helps

Postby Billy » Thu Apr 20, 2006 5:02 pm

Heidi,

Cancer is indeed a scary thing. I’ve found that hearing from other people in the same situation has helped to alleviate it, if just a little. My story is similar to yours. I was diagnosed with stage IV colon cancer September of 2004, I was 35 years old. I’ve been through surgeries, and chemos and even a brief period of remission. I had a small relapse in December of last year and I’m going through my second round of chemo. All signs are positive, even if from time to time my psyche believes otherwise.

The people here at the Colon Club are loving and supportive, and I’ve often found strength in them when my days seemed darkest. Everyone has different ways of coping and living with their cancer, and you can take from each of them the parts that fit your own life. As for me, I find that sharing and talking help with the fear and uncertainty. I’m blatantly open with my family and friends about my cancer. I joke about it, I write about it, I scream about it. If you keep your feelings inside, they can do more damage than the damn chemo, and we both know how much that stuff sucks!

Stay strong,

Billy
Rage, rage against the dying of the light.

http://billyscolon.blogspot.com

*uck Cancer

Support

Postby *uck Cancer » Fri Apr 21, 2006 8:18 am

Hi Heidi,
I'm very sorry you have to go through this ordeal. I was diagnosed with Stage IV colon cancer July 04. I had surgery to resect my colon, remove both ovaries (spread to left ovary), and my gallbladder. The cancer is too extensive in my liver for a resection. I'm hoping to have a procedure called, "Radio Frequency Ablation" done. I turned 33 April 11th and didn't know whether to cry or be happy. I work hard at pushing negativity out of my thoughts and focusing on beauty around me and within. This is not always easy so sometimes I get an attitude and think, "Fuck Cancer". Get yourself an attitude and have "No Fear". You are in the boxing ring with cancer as your opponent. Cancer has not beaten you! Empower yourself by finding out everything you can about your disease. You are your best Dr. I also have a 6 and 12 year old daughter that I don't want to leave without a mother. I trust God will protect them. Do your children know about God? You don't have to lie to them about your disease you have to reassure them that no matter what they will be okay.
Here are some things I have used:
Essiac Tea
Beating Cancer with Nutrition (Patrick Quillan)
Guided Imagery (healthjourneys.com)
You will be okay. Anytime you are afraid reach out to your friends here at the colon club.
Andrea

Heidi

Postby Heidi » Fri Apr 21, 2006 12:42 pm

Being scared is a normal reaction but you have come to a very good spot to allay those fears. The support and experience of this group will answer many of your questions and provide you comraderie and advice as you wage your battle. I was diagnosed with Stage IV colon, mets in liver and lungs after a resect about 18 months ago. Prognosis is not good but I refuse to accept it relying on strong support and prayers from friends, meditation, visualization and an excellent onc and staff. Read these messages and go to other newly, scared subscribers on this site and you'll read mainly the same messages: you CAN do it, remain positive, ignore the statistics, etc. We will all think good thoughts and/or offer prayers for you.


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