Just diagnosed with stage 3 colon cancer

New on here and looking for support.  There aren't any groups  in the area where I live.  I have been looking for survivor stories to help keep me positive and stumbled upon this website.  I had 18" of my colon removed on 3/5 , had PET Scan today, Chemo starts on 4/10.  I have never been so terrified in my life. I try to stay away from all websites that give survival statistics. 

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Comments

  • PatchAdams
    PatchAdams Member Posts: 271
    Littlethings.......

    Welcome!

    I was dx'd Stage IIIB in Jan. of 2009.  I had 18 inches of my colon removed and a few lymph nodes positive for cancer.  All was well until last Feb. when a tiny spot was found on my liver. Had a resection and NO follow up chemo after that.  It's been over 4 years since my original dx and I'm praying for many more.  

    Best of luck! You'll do fine with chemo. I completed all 12 treatments of FOLFOX. 

    Did you have a CT scan prior to surgery?  

     

     

  • Dyanclark
    Dyanclark Member Posts: 296
    Sounds Positive

    Well this is about same as my husband, he had 12" removed in 2008 was stage 2, no colostomy bag.    He had a 3 year remission.  He has kinda been in a battle for last 12 months but holding his own.   He now has a colostomy bag and just finished chemo, but he is also just back in remission.  The chemo is bearable you just have to limit your traveling due to chemo schedule.

    Everyone is different & you may get a complete remission, however, the doctors will monitor you very carefully.  The goal is to stay ahead of the cancer.   Try not to be terrified sounds like it hasnt spread and you should do well. 

  • littlethings
    littlethings Member Posts: 5

    Littlethings.......

    Welcome!

    I was dx'd Stage IIIB in Jan. of 2009.  I had 18 inches of my colon removed and a few lymph nodes positive for cancer.  All was well until last Feb. when a tiny spot was found on my liver. Had a resection and NO follow up chemo after that.  It's been over 4 years since my original dx and I'm praying for many more.  

    Best of luck! You'll do fine with chemo. I completed all 12 treatments of FOLFOX. 

    Did you have a CT scan prior to surgery?  

     

     

    CT Scan

    Thank You Patch,  Yes I had a CT Scan originally at a hospital in Jan at the beginning of symptoms. Lower stomach pain and the hospital diagnosed me with Diverticulitis and Colitis, which wasn't the case upon having the colonoscopy that found the cancer.

    No chemo after finding spot on liver?  Did they get everything?  Are you still show clean?

  • devotion10
    devotion10 Member Posts: 623
    Continuing response here to question you posted to me on the

    other thread ... "does positive support really happen on here?"

    Yes, it certainly does. Each and every day people log on and will respond to your questions and concerns.  Every person who posts is surviving and we have some members who are no longer in treatment with no evidence of disease that still post so that they can support those that are new on their journey.

    Being terrified, as you said, is a very real and valid emotion with a cancer diagnosis. Your journey is just beginning and you are also recovering from your recent surgery. Right now, you probably feel a great sense of loss of control over your life. Once you actively begin chemotherapy you will feel that you are fighting back and more in control.

    If you share with us what type of chemotherapy you will be receiving starting on 4/10 we may be able to give you some advice. Also, did you have colostomy?  If so, many on the board have and can be helpful there. Do you live in a small town, you mentioned lack of support.  Are you seeing an oncologist at a large hospital?

    As for survival statistics, don't be afraid ... read them, don't run from them ... and then put them aside. Remember that they are just numbers composed of averages that are for the most part from out-of-date studies.  Each individual is quite unique as to how they respond to treatment.

    Your picture is lovely.  I am sorry you have to be here seeking support ... but, yes ... positive support really does happen here.

    Breath deeply and have courage. -- Cynthia

  • thxmiker
    thxmiker Member Posts: 1,278
    Welcome!
     
    Look at the

    Welcome!

     

    Look at the Wellness Comunity.  It is another positive forum and group.  The Wellness Comunity has Nutrition, relaxation, vitamin, menatal health support, etc....  The Original Wellness Comunity is in Westlake California.  It is FREE, and there are many through out the nation.   

     

    We live in Small Mountain Comunity and we have local cancer support groups. May be speak with a local minister and see if they are interested in starting a group.  Just a thought.

    Best Always , mike

  • AnnLouise
    AnnLouise Member Posts: 276
    You stumbled on a great supportive group.....

    And everyone is willing and ready to be there for you and share their experiences Being terrified is a normal emotion and you will go through many feelings..Please remember we will be here for you to help you get through them. Sending positive thoughts ...~ Ann

  • dixonduke
    dixonduke Member Posts: 7
    AnnLouise said:

    You stumbled on a great supportive group.....

    And everyone is willing and ready to be there for you and share their experiences Being terrified is a normal emotion and you will go through many feelings..Please remember we will be here for you to help you get through them. Sending positive thoughts ...~ Ann

    i am new too.
    I joined up on here this month and have gotten lots of support and some good info.

    I was dx stage 3 about 3 weeks ago. I start chemo/radiation Monday and I too am afraid.....of the unknown. Luckily we have a Gilda's Club about 5 minutes from my house and they provide tons of support. The people on here will provide support also but I think it might be good to look further for more local support.

    I don't know if I am supposed to do this....but as I learned a long time ago it is easier to ask for foregiveness than ask for permission....google Imerman Angels. They can help provide a "mentor"....someone that had gone through exactly what you have. Read the website and see what you think. They came highly recommended from Gilda's Club.
  • tanstaafl
    tanstaafl Member Posts: 1,300 Member
    getting ahead of the curve

    My wife was initially stated as stage III .  One of the things that I was glad is that we started asap, some basic off label items, that are poorly utilized, or even understood, in the US.  

    Cimetidine around surgery, perhaps even right now, is really important for 2/3+ of the advanced CRC cases. Perhaps a difference of years or even cure. The cimetidine even for 7-30 days near surgery, appears to make a big dfference in life expectancy amongst people who otherwise recur, but can't be used later during FOLFOX days.  

    Vitamin D blood testing and several months of high dose vitamin D3 - my wife did 16,000-17,000 iu for about 2 months, before chemo, then ca 12,000 iu per day while on chemo.  Turned out 12,000 iu per day on chemo was too low for her, thank goodness her intake wasn't the more common 2000-5000 iu. Since then we have utilized many of the off label treatments like low dose aspirin, flavinoids (see LEF) and immune boosters (e.g. PSK).   

    Starting out, I read several Life Extension cancer articles as if my wife's life depended on their information.  In fact I'm pretty sure it did.  She turned out to be on the pessimistic side of stage IV, but is doing well today despite all professional pessimism.   I credit the "extras".

  • littlethings
    littlethings Member Posts: 5
    Your responses

    Thank You all for your responses.  My chemo drugs are going to be FU-5 and Eloxitin.  I live in Port Charlotte Fl andamazing they only have a support group for Spanish Speaking people.  The other closest group is in Venice FL and everyone is in their 80's.  I can't imagine.. I am the youngest in my area... LOL

    I did read on one pamplet for the drugs not to drink anything cold before or after chemo but the other drugs saysto put ice chips, popsicle or something cold in your mouth during treatment to help prevent the mouth sores.  Any advice on this?

    Kathy= aka Littlethings

  • Trubrit
    Trubrit Member Posts: 5,643 Member

    Your responses

    Thank You all for your responses.  My chemo drugs are going to be FU-5 and Eloxitin.  I live in Port Charlotte Fl andamazing they only have a support group for Spanish Speaking people.  The other closest group is in Venice FL and everyone is in their 80's.  I can't imagine.. I am the youngest in my area... LOL

    I did read on one pamplet for the drugs not to drink anything cold before or after chemo but the other drugs saysto put ice chips, popsicle or something cold in your mouth during treatment to help prevent the mouth sores.  Any advice on this?

    Kathy= aka Littlethings

    Nada

    I love it when advice contraditcts.

    Nothing cold after chemo, but popsicles and ice chips for mouth sores. YAY! 

    I do get that constricting feeling when I swallow anything cold, this last for several days after chemo. 

    Everyone responds differently to this cold aversion, so play it by ear. A little sip of comething cold and you'll know it. I got it the very first chemo session. BUT, I can sip room temperature drinks, as long as its a sip those first few days. 

    Good luck with everything.

    As for the support group. I wonder if someone young and energetic like youself could add a little life to the group. It must be SO HARD to be in your eighties and going trhough chemo. I wouldn't do it myself, but the will to survive runs strong.  I would join just to see if I could lift anyones spirits (and probably find they lift mine). 

     

  • YoVita
    YoVita Member Posts: 590
    dixonduke said:

    i am new too.
    I joined up on here this month and have gotten lots of support and some good info.

    I was dx stage 3 about 3 weeks ago. I start chemo/radiation Monday and I too am afraid.....of the unknown. Luckily we have a Gilda's Club about 5 minutes from my house and they provide tons of support. The people on here will provide support also but I think it might be good to look further for more local support.

    I don't know if I am supposed to do this....but as I learned a long time ago it is easier to ask for foregiveness than ask for permission....google Imerman Angels. They can help provide a "mentor"....someone that had gone through exactly what you have. Read the website and see what you think. They came highly recommended from Gilda's Club.

    I am a mentor for Imerman Angels

    I have been impressed with their efforts providing one to one support based on a similar diagnosis.  I highly recommend it.

  • steved
    steved Member Posts: 834
    Welcome

    Lots of new people joininlargely so I hope you are able to offer each other support as you take these early stages in all this. Starting chemo is hugely daunting and confusing. You are right about the cold advise. In truth most people do get a degree of loss of tolerance of cold both in the mouth and fingers and toes with oxaliplatin. For me it was short lived for a few days post infusion but can lead ontolonger term problems of neuropathy if persistent in thefingers and toes so do keep and eye on it and report to your oncologist. This probably overrides the advise about 5fu. In truth I did the combination for a time last year and found it fairly toleraBle for several cycles then had a funny allergic reaction to the oxaliplatin and had to stop it. Have to say a good number don't tolerate all the planned  oxaliplatin so play it cycle by cycle. The 5fu on the other hand is often well tolerated.

    Do try to keep as much of life as normal as possible and spend this time getting your head around the situation and your knowledge of everything up. Is a huge thing to happen but you have timeknow toadjust both physically and psychologically.

    Keep asking questions and I hope you find the support you are seeking here (ignore any arguing and odd spamming that is happening just now- its not always like that!).

    Steve

  • Deena11
    Deena11 Member Posts: 199
    Good luck!

    I had problems with cold items and liquids from the beginning to the end but got used to having drinks room temperature. 

    There is also a website called WhatNext you may want to look at for cancer patients and survivors for support.  Lots of people sharing their journeys.  Hang in there!!!

  • Deena11
    Deena11 Member Posts: 199
    dixonduke said:

    i am new too.
    I joined up on here this month and have gotten lots of support and some good info.

    I was dx stage 3 about 3 weeks ago. I start chemo/radiation Monday and I too am afraid.....of the unknown. Luckily we have a Gilda's Club about 5 minutes from my house and they provide tons of support. The people on here will provide support also but I think it might be good to look further for more local support.

    I don't know if I am supposed to do this....but as I learned a long time ago it is easier to ask for foregiveness than ask for permission....google Imerman Angels. They can help provide a "mentor"....someone that had gone through exactly what you have. Read the website and see what you think. They came highly recommended from Gilda's Club.

    Thanks Dixonduke

    I just signed up to be a mentor at Imerman Angels.  I wish I had someone to talk to one-on-one who had been through the experience when I was going through it,   What a wonderful idea.

    I didn't discover this forum until I was through my treatments and had learned a lot of things of the the hard way while going through it.  I'm glad newbies are reaching out here on this board to get support.

  • Coloncancerblows
    Coloncancerblows Member Posts: 296
    Welcome!  I'm also stage 3B

    Welcome!  I'm also stage 3B and have had 3 Folfox treatments so far.  I can't drink anything cold at all.  Ever!  Everything has to be room temp which.  I'm assuming you're getting the port.  I was scared to death to get that but it is a life saver.  Also, I was terrified the first time getting chemo.  It doesn't hurt at all when they access the port and I am terrified of needles.  One thing that helped with the nausea was my onc told me to start taking the nausea pills the day I started chemo, not when I started to feel nauscous.  That helped so much!  Now I take the nausea pills for about 5 days in a row and I'm good.  This is a great forum for support and everyone has been very helpful.  Good luck and keep us posted.  Hugs.....Cynthia

  • tammyghent
    tammyghent Member Posts: 9
    Stage 3c Colorectal Cancer Survivor

    I was diagnosed with Stage 3c Colorectal Cancer in July 2011. I had surgery in August to remove about a foot of my colon. I finished 6 months of Folfox chemo a year ago. I have had several CT scans, two colonoscopys and alot of bloodwork since and as of today am totally cancer free! BELIEVE that you too will survive this! I know you are scared! I was too and there were days when I would get discouraged and think I couldn't take one more day. But I am here to tell you that YOU CAN DO IT!!! Focus on the positive things in your life. Surround yourself with people you love and with activities that lift your spirits. Keep your mind occupied with pleasant things. Don't allow yourself too much time to sit and think. For me the thing that kept me strongest was my faith in God. I will be praying for you. If you have any questions or need some advice as you go through this journey, don't hesitate to ask! I will be happy to help any way I can. Don't ever forget, YOU CAN DO THIS! Just BELIEVE!

  • tammyghent
    tammyghent Member Posts: 9

    Your responses

    Thank You all for your responses.  My chemo drugs are going to be FU-5 and Eloxitin.  I live in Port Charlotte Fl andamazing they only have a support group for Spanish Speaking people.  The other closest group is in Venice FL and everyone is in their 80's.  I can't imagine.. I am the youngest in my area... LOL

    I did read on one pamplet for the drugs not to drink anything cold before or after chemo but the other drugs saysto put ice chips, popsicle or something cold in your mouth during treatment to help prevent the mouth sores.  Any advice on this?

    Kathy= aka Littlethings

    Cold sensitivity

    I had extreme cold sensivity during the same chemo treatment and could only drink warm or hot liquids. I used baking soda toothpaste and also rinsed my mouth frequently with warm baking soda water. I never had any mouth sores. Hope this helps you too!

  • Coloncancerblows
    Coloncancerblows Member Posts: 296

    Stage 3c Colorectal Cancer Survivor

    I was diagnosed with Stage 3c Colorectal Cancer in July 2011. I had surgery in August to remove about a foot of my colon. I finished 6 months of Folfox chemo a year ago. I have had several CT scans, two colonoscopys and alot of bloodwork since and as of today am totally cancer free! BELIEVE that you too will survive this! I know you are scared! I was too and there were days when I would get discouraged and think I couldn't take one more day. But I am here to tell you that YOU CAN DO IT!!! Focus on the positive things in your life. Surround yourself with people you love and with activities that lift your spirits. Keep your mind occupied with pleasant things. Don't allow yourself too much time to sit and think. For me the thing that kept me strongest was my faith in God. I will be praying for you. If you have any questions or need some advice as you go through this journey, don't hesitate to ask! I will be happy to help any way I can. Don't ever forget, YOU CAN DO THIS! Just BELIEVE!

    Tammy,
    So glad to hear you're

    Tammy,

    So glad to hear you're cancer free!  Love hearing stories of people that bear it!

    Cynthia

  • marbleotis
    marbleotis Member Posts: 720 Member
    Welcome

    I was Dx'ed on 1/13/12 (Friday the 13th by the way) with stage 3b colon cancer, 3 nodes and signet cell.  I had the right hemicolon surg on 1/31/12, then 6 months of chemo.  Was disconnected August 24, 2012.  I still have some issues with chemo-induced neuropathy, otherwise I am thrilled with each and every day I wake up.

    Things that bothered me before - who cares.  I want to be happy, help people where I can and appreciate the beautiful life I have been given.  It is not easy, you may have hard days.  You may not feel well some days - just allow that.  There are more good than bad.

    I also had 2 clean scans since then, a small polyp removed this past Jan and my CEA levels are great.  I eat a mediterrian diet that is organic.  I have never eaten better in my life. 

    There are wonderful stories on this site.  It helped me many times.

    Do not go on google.  Only get info from reputable sources.  Take all the info in and advice in and make decisions that make sense for you.

    As for age, I was 49 at Dx, that is young, but there are people much younger dealing with this.

    I am 1 year NED (no evidence of disease) this past Jan 31.  Yeah!

    All the best.  You will find out that with each treatment, you can do this, you really CAN.

    Keep us posted.

  • KayeKay
    KayeKay Member Posts: 122
    Olah!

    Dx stage 4 in Feb 2011. Rediagnosed again last month. This is beatable and u will find lots of support on here. Sometimes I just read some of the discussions to read the positive support people give to one another on here when I'm down. Any ?s or just wanna chat feel free to do it cause I along with the others here will give u lots of support. Its the colon canccerworld in here. I enjoy coming here to know that I am not alone and NEITHER R U!  :)