New to Board stage 4 Colon Cancer

Hello,  I wanted to introduce myself as I am new to the board. I am 42 and this year was diagnosed with stage 4 colon cancer with met to the liver. I found out by going to the ER for adbominal pain and they found a spot on my liver during ct scan. I found out I had cancer and I was in absolute shock. I had no symptoms, felt pretty good and am considered pretty young. My first inclination was to get the cancer OUT. That is all i wanted. I wanted surgery to make it all go away. I dont know if I did the right thing, but fortunate for me the DRs agreed the two spots were isolated. They ended up taking half of my liver and part of my colon and removed all the cancer. I have now been doing folfox treatment on my 7th round currently. I started 2 weeks after my surgery. Chemo has been up and down. The thing i struggle with the most is nueropathy pain in my body.  I cannot eat spicy foods anymore which makes me sad  They did have to reduce my chemo as after the first treatment i couldnt eat and lost 10 pounds.  Since then they reduced my treatment and all as been going pretty well. I have been able to maintain a pretty decent life!. My house is a mess and there are days i just lay in bed and cant do anything but im taking the good with the bad.  The worst symptom I have had is hand foot syndrome where it becomes so painful I cant even walk or touch anything.  My doctor is hoping for a very good prognosis. I recently got married in March to find out I have had Cancer in April. It has been a ride. IT definatly has put a strain on our marriage but we are pulling through. He is super supportive. I am trying to really not get emotional and to stay positive which somedays is very hard considering. If anyone has any words of advice for me  or want to share their story, that would be wonderful. I can say this as all gone so fast and it feels like a dream, especially my surgery. Its like my brain needs to catch up to what has actually happened if that makes sense. 

Comments

  • Trubrit
    Trubrit Member Posts: 5,796 Member
    Welcome Queenwarrior

    Sorry for the trial that brought you here to the forum, but now that you're a part of our club, we're here to help.

    I'm quite surprised that they started chemo so soon after such a big surgery. They usually wait six weeks for the healing process. 

    FOLFOX is nasty, but it can do the job and thats the main thing. 

    Neuropathy is nasty. I hope they are mindful of that when you go in for further treatment. Maybe lower the dose. 

    I was impressed and touched by your response in desnees thread. You have a good heart. 

    Tru

  • NHMike
    NHMike Member Posts: 213 Member
    I have my surgery in a few

    I have my surgery in a few weeks and will be going through what you are going through. I've seen lots of people go through it here and you may want to look up some of the older threads on how people do and the adjustments that they make with their doctors. The cancer path is tough as you already know. In my case, I started with Xeloda and Radiation and it's rough. Surgery is next and then more chemo afterwards so I will be there too. There are many that have gone before you here and many of us following.

    It's okay to get emotional - cancer tries our emotions and it might help to let it out.

  • abrub
    abrub Member Posts: 2,174 Member
    I couldn't eat spicy foods on chemo either

    The slightest bit of black pepper tasted like fire to me.  However, it didn't take too long after completing chemo for me to be able to enjoy everything again.  This is just a temporary state.  (Oh, how my husband hated cooking for me during chemo; everything had to be beyond bland, and we generally like strong flavors.)

    I'm 10 years out of a Stage 4 (Appendix Cancer) diagnosis.

    Alice

  • darcher
    darcher Member Posts: 304 Member
    edited October 2017 #5
    No spice here either.

      I never could eat anything spicy.  Even before cancer if it was any hotter than a taco bell spicy taco, forget it, I'd be spitting it out.   Like NHmike,  I've gone through the radiation and 28 sessions of Xeloda finishing them Spet 11.  I didn't have much in the way of side affects while doing it but since then I've been a bit of a mental mess.  The tumor is still there as evidenced by the bathroom issues I stilll have. It's plugging up the works.  A pet scan on friday will show whether it's still alive or not.   I think it's breaking up and coming out bit by bit so that's giving me some positive feedback.  In a way it's almost funny that Im looking in the toilet for solice.  All the waiting is something we can all relate to. The not knowing, wondering, and then pondering the possibilities. There is no way to avoid it and no way to "put it out of your mind" completely.  I was hoping the tumor would have been eradicated with the treatment  but it wasn't.    

    What I've done is try not to research much to avoid seeing the negatives.  That is what we'd end up focusing on and that makes matters worse.  I am putting my faith in the doctors knowledge since I have next to none and as we all know, a little bit of knowledge can be dangerous.  I found that out while looking at proton versus standard radiation.  It took a while and the doctor's explanation to realize that proton was not the best way to go, not for this.  From that point onward I stayed out of it and just did what I was told.

      Some of the side affects caught me by surprise. I had no hunger or thirst for a while. That grabbed hold without me noticing. There is loss of short term memory.  You may not notice it unless it's pointed out by someone else.  The Neuropathy was one I was worried about and was told could happen. So far I've escaped it. The funny thing is, I'm in worse shape now after the chemo & radiation ended than while I was going through it.  The hopes of the tumor vanishing and it not are what have me tied up in nots now.   

  • NHMike
    NHMike Member Posts: 213 Member
    darcher said:

    No spice here either.

      I never could eat anything spicy.  Even before cancer if it was any hotter than a taco bell spicy taco, forget it, I'd be spitting it out.   Like NHmike,  I've gone through the radiation and 28 sessions of Xeloda finishing them Spet 11.  I didn't have much in the way of side affects while doing it but since then I've been a bit of a mental mess.  The tumor is still there as evidenced by the bathroom issues I stilll have. It's plugging up the works.  A pet scan on friday will show whether it's still alive or not.   I think it's breaking up and coming out bit by bit so that's giving me some positive feedback.  In a way it's almost funny that Im looking in the toilet for solice.  All the waiting is something we can all relate to. The not knowing, wondering, and then pondering the possibilities. There is no way to avoid it and no way to "put it out of your mind" completely.  I was hoping the tumor would have been eradicated with the treatment  but it wasn't.    

    What I've done is try not to research much to avoid seeing the negatives.  That is what we'd end up focusing on and that makes matters worse.  I am putting my faith in the doctors knowledge since I have next to none and as we all know, a little bit of knowledge can be dangerous.  I found that out while looking at proton versus standard radiation.  It took a while and the doctor's explanation to realize that proton was not the best way to go, not for this.  From that point onward I stayed out of it and just did what I was told.

      Some of the side affects caught me by surprise. I had no hunger or thirst for a while. That grabbed hold without me noticing. There is loss of short term memory.  You may not notice it unless it's pointed out by someone else.  The Neuropathy was one I was worried about and was told could happen. So far I've escaped it. The funny thing is, I'm in worse shape now after the chemo & radiation ended than while I was going through it.  The hopes of the tumor vanishing and it not are what have me tied up in nots now.   

    You're about 1.5 weeks behind

    You're about 1.5 weeks behind me though my surgery is at 8 weeks and yours might be before mine as it seems like 6-8 weeks is common. So I expect that you will have an MRI very soon for the surgeon to plan the options. I think that it took about two weeks after completion of the treatment to feel the big difference in toilet function, and, yes, I was watching since before treatment started. I think that Beth also did not have that much tumor shrinkage but she's had her surgery and the tumor is gone and I think that her mental situation is a lot better with that out of the way.

    BTW, that's a great picture of you. You look young and fit there.

  • blessed39
    blessed39 Member Posts: 90 Member
    How I Beat Stage Four Colon Cancer

    Dear Queenwarrior, So sorry that you are on here, but this is where you will find many friends and help.

    My cancer story is on my blog, which is on my member page. My story is entitled "How I Beat Stage Four Colon Cancer"

    God Bless you,    blessed39

  • darcher
    darcher Member Posts: 304 Member
      NHMike, I still look pretty

      NHMike, I still look pretty much the same.  That picture was taken about a year or so back during one of the last tournaments in San Diego.  It was fun and at that instant I was trying to keep from sliding down the hill.  The guy who took the picture thought I was going to lose it  (why he  was shooting pictures)  but luckily I was able to keep my footing and make the shot.  With how things are going there is a good chance I may be going back there and ditching the 6 months of cold and 6 months of good weather in Colorado.  

     My surgery is scheduled for Nov 3.  There was no mention of an MRI but I think a PET scan should be good enough to see what I want this Friday.  I'm going to insist I see it before it gets shipped off to the oncologist.  If there is any activity it will show up as bright spots. Cancer loves sugar.  What I saw the last time was the PET scan from back in July that had me freaked out. It's like a lit bulb where the the tumor is.  I suspect the amount of light coming off it gave the appearance of it being bigger than it really is. I wasn't told that but it stands to reason that if something is collecting and matabolizing the radioactive glucose it creates a bright spot larger than it is. Like a lit up light bulb it will look larger than true size if photographed.  It's something I'm going to ask about since it seems logical.     

     QueenWarriar, what you're going through is pretty much the same as everyone I else.  You'll lose track of time. It either goes super fast or very  slow.  More often than not, you'll get both and the emotional highs and lows will be frequent and in some cases will occur several times in a day. The best thing to do is keep your mind busy with something.  It's not perfect but if you're focused on a hobby or something that makes you happy it's that much less time for your mind to go blank.   Going blank is what allows cancer to come in and fill you with dread.

      

     

  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
    Welcome

    Sorry that you are going through this.  It has to be terrible as a new bride and going through what you and your husband is trying to deal with.  It sounds like you have had a plan going forward with the surgery and the treatments already.  Just make sure that if you feel the hand and feet are getting unbearable tell your doctor because you don't want permanent damage from the chemo.  My doctor wouldn't listen to me and now I'm facing permanent neuropathy so be direct with doctor.  You might want to try some Ensure to see if you can keep your energy and calorie count up.  It's not good to lose weight.  You need your strength.  Hoping you feel better soon.  Welcome once again and you found a great board.  We will always be here for you.

    Kim

  • NHMike
    NHMike Member Posts: 213 Member
    darcher said:

      NHMike, I still look pretty

      NHMike, I still look pretty much the same.  That picture was taken about a year or so back during one of the last tournaments in San Diego.  It was fun and at that instant I was trying to keep from sliding down the hill.  The guy who took the picture thought I was going to lose it  (why he  was shooting pictures)  but luckily I was able to keep my footing and make the shot.  With how things are going there is a good chance I may be going back there and ditching the 6 months of cold and 6 months of good weather in Colorado.  

     My surgery is scheduled for Nov 3.  There was no mention of an MRI but I think a PET scan should be good enough to see what I want this Friday.  I'm going to insist I see it before it gets shipped off to the oncologist.  If there is any activity it will show up as bright spots. Cancer loves sugar.  What I saw the last time was the PET scan from back in July that had me freaked out. It's like a lit bulb where the the tumor is.  I suspect the amount of light coming off it gave the appearance of it being bigger than it really is. I wasn't told that but it stands to reason that if something is collecting and matabolizing the radioactive glucose it creates a bright spot larger than it is. Like a lit up light bulb it will look larger than true size if photographed.  It's something I'm going to ask about since it seems logical.     

     QueenWarriar, what you're going through is pretty much the same as everyone I else.  You'll lose track of time. It either goes super fast or very  slow.  More often than not, you'll get both and the emotional highs and lows will be frequent and in some cases will occur several times in a day. The best thing to do is keep your mind busy with something.  It's not perfect but if you're focused on a hobby or something that makes you happy it's that much less time for your mind to go blank.   Going blank is what allows cancer to come in and fill you with dread.

      

     

    Looks like we're going for

    Looks like we're going for surgery around the same time. It seems like we've got a growing gang right now for October surgeries.

  • I am new to Board as well, Stage 4 rectal/colon cancer

    I am in desperate need of information and my nurse directed me to various support groups.  I have only read a few posts but I am eager to read more as it sounds like there is a ton of info.  Sooo, I am a 50 year old woman, diagnosed on September 14th with colon cancer.  after all of my MRI's and CT scans they changed it to Rectal cancer.  Apparently if it is in any part of your rectum they say that the Rectum trumps the Colon!! Therefore they are treating me as Rectal.  I meet with the Radiation Oncologist on Tuesday October 17th and the Medical Oncologist on October 23rd...I am scared as H#LL!!  Not just for me but for my twin girls that are turning 10 on Christmas Eve!  It sounds like all of you are so helpful and supportive,  I am in so much need at this point. 

  • BRHMichigan
    BRHMichigan Member Posts: 368

    I am new to Board as well, Stage 4 rectal/colon cancer

    I am in desperate need of information and my nurse directed me to various support groups.  I have only read a few posts but I am eager to read more as it sounds like there is a ton of info.  Sooo, I am a 50 year old woman, diagnosed on September 14th with colon cancer.  after all of my MRI's and CT scans they changed it to Rectal cancer.  Apparently if it is in any part of your rectum they say that the Rectum trumps the Colon!! Therefore they are treating me as Rectal.  I meet with the Radiation Oncologist on Tuesday October 17th and the Medical Oncologist on October 23rd...I am scared as H#LL!!  Not just for me but for my twin girls that are turning 10 on Christmas Eve!  It sounds like all of you are so helpful and supportive,  I am in so much need at this point. 

    Welcome

    We always reluctantly welcome new people.  None of us wants to be here.  I was just diagnosed in May, went through 28 radiation treatments and chemo pills in July and August.  Just had surgery to remove my 11cm tumor ladt Tuesday.  It was 4 cm from anal verge and up until a week prior to surgery, surgeon promised a temporary.  Well, I have a permanent.  Like you, this was my worst fear.  And guess what?  I am okay with it.  I am happy to be alive.  People I never kbew had colostomies are coming out of the woodwork.  I promise you, it's not that bad!!  I have twin boys who are 21, and 3 other children.  They need us to be around for them.  I plan on getting back to the saina and pool at my gym asap.  I can't wait to go out and not worry about where a bathroom is!  

    We have all experienced the panic and fear you are dealing with.  I lost 45 pounds between April and August.  Stress and fear suck.  Cancer sucks. This discussion board has helped me so much.  Know that we are here for you.  Read. But don't Google too much!  Sends me into fits of depression to read old statistics.  Like Olivia Newton John recently said, 'I will not be a statistic.'

    Praying for you.  --Beth

  • Trubrit
    Trubrit Member Posts: 5,796 Member

    I am new to Board as well, Stage 4 rectal/colon cancer

    I am in desperate need of information and my nurse directed me to various support groups.  I have only read a few posts but I am eager to read more as it sounds like there is a ton of info.  Sooo, I am a 50 year old woman, diagnosed on September 14th with colon cancer.  after all of my MRI's and CT scans they changed it to Rectal cancer.  Apparently if it is in any part of your rectum they say that the Rectum trumps the Colon!! Therefore they are treating me as Rectal.  I meet with the Radiation Oncologist on Tuesday October 17th and the Medical Oncologist on October 23rd...I am scared as H#LL!!  Not just for me but for my twin girls that are turning 10 on Christmas Eve!  It sounds like all of you are so helpful and supportive,  I am in so much need at this point. 

    Hello there, bellsand......

    welcome to the forum. 

    You have come to the right place, as we can all help you along this new journey of yours. 

    How fun to have twinnies. And what a Christmas gift that was for you, 10 years ago. It is terribly frightening to think that you may have to leave them. The was my allconsuming thought, when I was diagnosed, and my boys are in their 20's. 

    Well, what do people think about when they hear the work Cancer? Death! But you wiil see, especially here on the forum, that its all about life. About living. I'm not too big on the word 'surviving' either, to be honest, though I do use it over survivor. That makes it sounds like its some kind of hard thing to do. Which, at first it is, but then, living becomes the focus. Really living life, with enjoyment, every day. 

    Right now though, you are at the beginning, so gettiing through the coming weeks and months will be a chore, and that is why this forum is here, and why we are here. To help you through it, and as you move forward, you get to help others as well.  

    And I believe that Cancer, when it is in the colon and the rectum is called Colorectal Cancer - CRC. 

    I'm glad you have just jumped right in, but it would be fun if you started a thread of your own, and then we can all welcome you there. 

    Tru

  • queenwarrior
    queenwarrior Member Posts: 9
    thank you all for the welcome

    Thank you all so much for the welcome. I appreciate all of your comments more than you know. This has been quite the journey and one I am hoping is over soon. I am so respectful of all of you wether the ones going through cancer, or the caretakers. You all deserve to be heros.  

  • danker
    danker Member Posts: 1,276 Member
    Your age

    your age is to your advantage!  I was 77 when I stated this journy.   Read my history.  Now 85 and NED  for many years proves any of us can beat it.  Good luck to you!!!

  • cpaul70
    cpaul70 Member Posts: 3

    I am new to Board as well, Stage 4 rectal/colon cancer

    I am in desperate need of information and my nurse directed me to various support groups.  I have only read a few posts but I am eager to read more as it sounds like there is a ton of info.  Sooo, I am a 50 year old woman, diagnosed on September 14th with colon cancer.  after all of my MRI's and CT scans they changed it to Rectal cancer.  Apparently if it is in any part of your rectum they say that the Rectum trumps the Colon!! Therefore they are treating me as Rectal.  I meet with the Radiation Oncologist on Tuesday October 17th and the Medical Oncologist on October 23rd...I am scared as H#LL!!  Not just for me but for my twin girls that are turning 10 on Christmas Eve!  It sounds like all of you are so helpful and supportive,  I am in so much need at this point. 

    colon cancer

    I had cancer cells not growing yet in my colon twice.   I started drinking human grade diatomaeous earth.   It cleanse the colon of parasites and  I have  not had any cancer cells since.  You can order it online at "wolf creek ranch" or at a feed store. Farmers feed it to their animals to take parasites out of their bodies so when they sell meat it is clean.  It has many minerals in it and silica.  It looks like dirty dishh water and taste chalking but keeps my colon clean.  I drank it at night before bed.  1 TBSP in about one fourth glass of cold water.  You can drink it like three times a day  It doesn't hurt you in any way.   Hope this infrmation is of use to you.  Research it if you want and make sure its food grade cause theres a pool grade also.