Diagnosed with colon tumor one month ago - what to expect next

BrianChristopher

Supposed to do Chemo on Monday 2-13-17

I recently was diagnosed with Colon cancer Stage 3 which affect one lymph node, had the resection surgery and recently the port put in.  When I looked at my CEA number it was 5 before surgery and now it is .7.  However I keep reading about low Neutrophil count (nuetropenia) and so when i looked at my count it is low even before I begin my Chemo (Oxaliplatin) and Xeloda.  I called my Dr. and the nurse said not to take the pills until I come in for a lab.  I thank all of you for the information and sharing your personal journey.  As I begin mine... I do so with much trepidation.  Probably due to the internet education i have been digesting but also because this all began for us onn Dec. 5th 2016.  I am trying to be strong for my wife Tammy, and my son Daniel-9, and my daughter Grace 11, but to be honest "trying" is all i can muster right now. May God Bless us all

BrianChristopher

marybrang said:

My case very much like yours

My case was very similar to yours: I was diagnosed at age 50 during a routine exam with Stage 3b sigmoid colon cancer (it had spread to my lymph nodes), I had surgery, and then I went through an identical chemo regimen. This past December I met with my oncologist for the last time -- she said I was cured. I had waited to hear those words.

Now for some key details:

Had trouble for the first few months after surgery with using the toilet. There are no polite words for this part. I really only had three accidents...? maybe just 2, but I had close moments, I had a fear of going out for long amounts of time without a bathroom handy -- -it wasn't easy adjusting to my "new normal." Even today, I still have days where I go to the bathroom unusual amounts. I cannot eat exactly the same as I did in the past if I am at work -- I have certain ways of eating (no breakfast, salad for lunch) that works best for me when I have to sit at a desk for the rest of the day.

I don't think I'm unusual, you will have to relearn to a certain extent what foods work for you and what foods do not. BTW, I can still eat anything, I just have to time it correctly if I know I cannot be running to the bathroom as ideally needed.

Chemo... well, chemo was chemo. I had to delay a session shortly before the end because I had become so weak and I needed to build myself up. Still, I soldiered on and came through it and now I'm here. I don't think it's unusual for people to need a break. My one piece of advice for the chemo portion of cancer: Exercise, exercise, exercise. In my case I walked as much as possible. This helped tremendously, lifted my spirits and helped me recover from the surgery.  

After care: No one talks about this but you're kinda like Humpty Dumpty after cancer -- you have to put yourself back together again after it's over and in subtle ways, that's the hardest part. You're no longer up against it but you are more alone, in ways. Everyone sees you as "back to normal" but inside you're anything but. I believe this is the moment where you really must show your stength. This is the moment you learn what you're made of -- in the best way. 

Here's the weirdest part: When I was diagnosed, I had never been so shocked in my life -- I felt perfectly healthy and I was just out of my mind crazy, crying, bargaining with God -- I was like a three year old on the carpet kicking and screaming ...

Today, I can honestly say that I am grateful for the experience, it changed me for the best. It cost me time, it cost me money, but it made me better.

IF I SURVIVED IT, YOU CAN TOO!!!!!  Seriously, you can beat this, lots of people do. I found reading these message boards very helpful, others gave me hope. 

Thank you Mary

Thank you Mary your post was good for me to hear.  I too am 50 and had stage 3b sigmoid colon cancer (I say had hoping the surgery rid me of it) My chemo is Xeloda (pill form 5-FU) and Oxaliplatin.  I start Monday for the first round, but my Nuetrophil count is low not sure what the Dr. will say about that, actually I had to call in and ask having noticed it on my last blood work after reading about chemo causing low numbers.  Again thank you for your post it made a lot of sense to me and gave me hope .  brian

marybrang

to BrianChristopher

What I didn't put in my first post is this:

Everything happens so quickly when you are diagnosed with cancer. You must make a lot of drastic decisions in very short order without having the time to take in and really think about the choices you are making. I felt barely functional and not quite recovered from the utter shock to my system that was surgery and yet my doctors were already hurrying me into chemo.

In other words, I wasn't prepared even if I still went along with my doctor's plan.  However, after that first chemo session (5-FU and Oxy), I had a major freak out and truly thought about ending my treatment there.  

The feeling of chemo in my body was hideous. I will not go into details because other people do not find it so terrible. Still, I chose to stick with the course, telling myself that all these scientists had come up with this baroque method for treating cancer, and, since I'd bought into the first part of the plan (surgery), I might as well trust them and fulfill the plan.  (I'm not sure that's entirely reasonable but that was how I framed my decision.)

Despite the fact that I'd beome so weak toward the end, I still think of that very first chemo session as the worst. Sadly, you get used to it somehow. You even learn how to disconnect the IV from your own port! 

It's all personal, BrianChristopher. These choices are yours to make. You're probably still in shock, so you probably don't even feel like you're making choices -- you possibly feel like you're being rushed into things -- but these treatment options are simply choices about your life. There are people who only have the surgery and skip chemo. There are people who don't even have surgery.  Dig dip, talk to family and friends, meditate, pray, whatever... but GET WELL. You've got a family and this is a hurdle. So you need to do whatever YOU believe is necessary to clear it and keep running forward.

And if you choose to follow your doctor's plan, there will be a schedule of sessions and blood work and discussions of whether your white blood cell count is high enough or whether your liver enzymes might be indicating a new tumor.  You're intimately involved and yet you feel like a passenger in your own body. Cancer is a weird experience, just get through this part as best you can with as much dignity as you can and try to remember your real life is waiting for you on the other side.  

Trubrit

Mary

I will not go into details because other people do not find it so terrible. 

On the forum you can post whatever you feel is helpful to other members.  I know how you feel, because I also went through a horrendous chemo and even more horrendous radiation series; yet, when I post about how terrible it was, I sometimes feel other people think I am over-exaggerating or sewing fear into the new members, so I keep it simple.

I did post a list, an extensive list, of the side effects I had during chemo.   

My point is, don't be affraid to add whatever you feel is appropriate in helping others.  Your two posts so far have been wonderfully informative. Welcome to the forum.

TRU

BrianChristopher

marybrang said:

to BrianChristopher

What I didn't put in my first post is this:

Everything happens so quickly when you are diagnosed with cancer. You must make a lot of drastic decisions in very short order without having the time to take in and really think about the choices you are making. I felt barely functional and not quite recovered from the utter shock to my system that was surgery and yet my doctors were already hurrying me into chemo.

In other words, I wasn't prepared even if I still went along with my doctor's plan.  However, after that first chemo session (5-FU and Oxy), I had a major freak out and truly thought about ending my treatment there.  

The feeling of chemo in my body was hideous. I will not go into details because other people do not find it so terrible. Still, I chose to stick with the course, telling myself that all these scientists had come up with this baroque method for treating cancer, and, since I'd bought into the first part of the plan (surgery), I might as well trust them and fulfill the plan.  (I'm not sure that's entirely reasonable but that was how I framed my decision.)

Despite the fact that I'd beome so weak toward the end, I still think of that very first chemo session as the worst. Sadly, you get used to it somehow. You even learn how to disconnect the IV from your own port! 

It's all personal, BrianChristopher. These choices are yours to make. You're probably still in shock, so you probably don't even feel like you're making choices -- you possibly feel like you're being rushed into things -- but these treatment options are simply choices about your life. There are people who only have the surgery and skip chemo. There are people who don't even have surgery.  Dig dip, talk to family and friends, meditate, pray, whatever... but GET WELL. You've got a family and this is a hurdle. So you need to do whatever YOU believe is necessary to clear it and keep running forward.

And if you choose to follow your doctor's plan, there will be a schedule of sessions and blood work and discussions of whether your white blood cell count is high enough or whether your liver enzymes might be indicating a new tumor.  You're intimately involved and yet you feel like a passenger in your own body. Cancer is a weird experience, just get through this part as best you can with as much dignity as you can and try to remember your real life is waiting for you on the other side.  

Well my blood count was up

Well my blood count was up just barely and so we proceeded with the infusion of Oxaliplatin, and I started the Xeloda last night, the cold sensitivity is real and immediate, a little nausea but really not bad, which is really good.  My kids are checking me and looking to see if something weird is happening and so I try to keep my attitude in check and allow my hope to shine for them for my wife and me.  thank you for sharing and it is so helpful to have you and those who have gone down this road to help us who are beginning on ours.  We are each unique beings and so our journey will be as unique and our own.  I pray we all experience that healing that begins within our souls and permeates our bodies.   Brian

Joan M

I agree with you TRU!

When you describe the side effects from treatment, it helps others know that they are not alone in their suffering and that they can make it.  So many of us put on a brave front for our family and caretakers, and often minimize the suffering we endure from the chemo and other treatments so that we don't burden or bore our listeners.  We know that when people ask how we are doing,  most of them they really don't want all the gory details. 

I joined this forum to find hope and to get real information to help battle cancer.  I have been helped by the details of treatments and how to survive and/or reduce the negative side effects.  

Personally, I want to know what the worst case scenario is so that I can find the strength to endure it knowing that others have suffered and survived.  One of my cousins survived 3 different cancers over the last 27 years and she told me graphically how bad it was for her at times, such as when she went through a bone marrow transplant over 20 years ago due to the chemo and/or radiation destroying her bone marrow.  She said she was in and out of conciousness for 6 months, hallucinating and crying, and praying to God to help her get through it. She had it rougher than others who have gone through bone marrow transplants, but she fought and survived despite the pain and suffering and is alive 20 years later to tell her story.   She had hand & foot syndrome from chemo and had blisters on the soles of her feet and couldn't even walk.  Her daughter helped by putting cold washclothes and ice packs on her feet to help ease the pain.  These are stories of a survivor and what she did to survive. She told me all about her experiences so that I would know and understand that if she could survive, I could too.   She is alive and well all these years later, now almost 70 years old, still working and living in her own house/   

Never be afraid to post your details.  It can be especially helpful because you may find out how others have dealt with and survived similar problems.

 

marybrang

BrianChristopher said:

Well my blood count was up

Well my blood count was up just barely and so we proceeded with the infusion of Oxaliplatin, and I started the Xeloda last night, the cold sensitivity is real and immediate, a little nausea but really not bad, which is really good.  My kids are checking me and looking to see if something weird is happening and so I try to keep my attitude in check and allow my hope to shine for them for my wife and me.  thank you for sharing and it is so helpful to have you and those who have gone down this road to help us who are beginning on ours.  We are each unique beings and so our journey will be as unique and our own.  I pray we all experience that healing that begins within our souls and permeates our bodies.   Brian

hope all is going well BrianChristopher

Just catching up now. Hope you are continuing forward and your family is taking care of you. For me, chemo-time was just head down, keep moving, do anything to avoid thinking about it.

YOU CAN DO IT!! 

marybrang

RetiredNellie said:

Thank you Mary for the post. 

Thank you Mary for the post.  Very helpful, pragmatic and down to earth.  How are things going for you now?

So sorry, Nellie

Somehow I missed seeing this first time I looked at the discussion boards! I apologize, I didn't mean to ignore you, Nellie.

How are you doing?

I'm fine these days, working at a new job and not looking back. Still, it's always there and any little pain in my abdomin and I worry "it's back."  I don't dwell though. Hey-- something's gonna get all of us in the end! 

marybrang

Trubrit said:

Mary

I will not go into details because other people do not find it so terrible. 

On the forum you can post whatever you feel is helpful to other members.  I know how you feel, because I also went through a horrendous chemo and even more horrendous radiation series; yet, when I post about how terrible it was, I sometimes feel other people think I am over-exaggerating or sewing fear into the new members, so I keep it simple.

I did post a list, an extensive list, of the side effects I had during chemo.   

My point is, don't be affraid to add whatever you feel is appropriate in helping others.  Your two posts so far have been wonderfully informative. Welcome to the forum.

TRU

Thank you, Tru.

I CLUNG to these discussion boards all while I was sick -- without ever posting, I just couldn't for some reason -- so now I am wanting to offer encouragement wherever I can.  The people who had survived and written about their experiences gave me hope... each time I read  "4 years NED," or "visited my onc who gave me good news" I felt hope... That's why I'm here -- just trying to impart a little hope. 

Cancer is a grim business, after all! 

marybrang

Joan M said:

I agree with you TRU!

When you describe the side effects from treatment, it helps others know that they are not alone in their suffering and that they can make it.  So many of us put on a brave front for our family and caretakers, and often minimize the suffering we endure from the chemo and other treatments so that we don't burden or bore our listeners.  We know that when people ask how we are doing,  most of them they really don't want all the gory details. 

I joined this forum to find hope and to get real information to help battle cancer.  I have been helped by the details of treatments and how to survive and/or reduce the negative side effects.  

Personally, I want to know what the worst case scenario is so that I can find the strength to endure it knowing that others have suffered and survived.  One of my cousins survived 3 different cancers over the last 27 years and she told me graphically how bad it was for her at times, such as when she went through a bone marrow transplant over 20 years ago due to the chemo and/or radiation destroying her bone marrow.  She said she was in and out of conciousness for 6 months, hallucinating and crying, and praying to God to help her get through it. She had it rougher than others who have gone through bone marrow transplants, but she fought and survived despite the pain and suffering and is alive 20 years later to tell her story.   She had hand & foot syndrome from chemo and had blisters on the soles of her feet and couldn't even walk.  Her daughter helped by putting cold washclothes and ice packs on her feet to help ease the pain.  These are stories of a survivor and what she did to survive. She told me all about her experiences so that I would know and understand that if she could survive, I could too.   She is alive and well all these years later, now almost 70 years old, still working and living in her own house/   

Never be afraid to post your details.  It can be especially helpful because you may find out how others have dealt with and survived similar problems.

 

Your cousin sounds like a trooper!

we all need different things... some of us need the gritty details, others need jokes... it's all good on the discussion boards!  

BrianChristopher

marybrang said:

hope all is going well BrianChristopher

Just catching up now. Hope you are continuing forward and your family is taking care of you. For me, chemo-time was just head down, keep moving, do anything to avoid thinking about it.

YOU CAN DO IT!! 

thank you Mary

I am blessed with my wife Tammy, daughter Grace and son Daniel whose love is my strength.  Your posts and all the other have shined a light on my dark path.  For this I am grateful, each night my family and I pray for healing of us all.  So I will push on. Brian Christopher

 

BrianChristopher

Trubrit said:

Mary

I will not go into details because other people do not find it so terrible. 

On the forum you can post whatever you feel is helpful to other members.  I know how you feel, because I also went through a horrendous chemo and even more horrendous radiation series; yet, when I post about how terrible it was, I sometimes feel other people think I am over-exaggerating or sewing fear into the new members, so I keep it simple.

I did post a list, an extensive list, of the side effects I had during chemo.   

My point is, don't be affraid to add whatever you feel is appropriate in helping others.  Your two posts so far have been wonderfully informative. Welcome to the forum.

TRU

Trubrit

Thank you, I have always found your advice even keeled and your attention especially to newcomers very generous. Your shared experiences may not be mine but a shared journey is made lighter even when it is uphill.  Brian Christopher

cherrob123

tooshort1 said:

colon cancer

I just found out I have colon cancer,the PET scan has found cancer in my liver, left breast and kidney.I am having a biopsy

of liver next week.I am so scared,I don't know what is going to happen,how I'm going to deal with all of this.I will be having

chemco and radiation. Will I lose my hair,I see most people do,will it make me sick .I need help and yes the doctors have told me things but they have not be there.

Hair

My hair thinned a considerable amount but I never lost my hair. Diagnosed Stage IV metastatic rectal cancer spread to the liver and lungs January 2014. Three years later I'm still here. This disease can be beat. It's a hard road but it can be done.

 

Good luck

 

Cheryl