Any Stage 4 Colon cancer Survivors here :((

I am so very sorry you're here. You've come to the right place, however. There are a number of stage four survivors on here who are living life large and others who are having the best life they can. I'm sure they'll chime in with their stories. Like someone told me on here, you don't see most of the survivors on here, they don't want to keep revisiting it but some do stay to encourage people like you and your husband.

I was diagnosed stage three early this year and fully intend to beat it. What chemo is he on and is he also on radiation? Both can give him terrible fatigue. I had very little bausea but my appetite was gone. I had to make myself eat and I ate very little. My poor husband was always running out to get some whim of mine and then getting home and I no longer wanted it.

Everyone reacts differently to chemo and everyone gets different things out of it, both curatively and as side effects. My doctor also wanted me to have chemo and radiation to shrink my tumour before surgery so he'd have good margins. I had fatigue, no appetite, super strong smelling ability, chemo fog (still do a bit), and no energy. I was on 5FU.

Now I've had the surgery to remove the tumour I'm on a clean up chemo called folfox5 and I'm having some other side effects. Cold sensitivity, fatigue, a blood clot, and today during the chemo one side of my face and tongue went numb.

There's a name for the swelling but I can't remember what it is. It can be permanent so I think you should call his chemo oncologist regarding that in the morning. Wait, it's lipidema.

I was diagfnosed with Stage IV cancer with mets to the liver (innumerable tumors) in February of this year.  I started treatment immediately, and at the start I experienced incredible bouts of pain in my chest and abdomen.  It got to be so bad that I couldn't breathe in without intense pain.  I went to the ER and nothing was found outside of the tumors , pain meds were my friend for about a month.  The pain eventually went away as the tumors started shrinking from chemo.  The doctors said that my liver was most likely swollen causing the pain, though it was in areas other than just my liver.  All I can say based on my experience is deal with the pain as best you guys can and trust it will go away soon.  I'm so sorry that you're going through this and hope things get better sonner than later.  I know it's very scarry and defeating.

Fatigue/weakness/tiredness is normal having cancer with or without chemo, though chemo seems to cause this as well.  As an aside, I waited longer than I should have to get dignosed and treated (my symptoms had been ongoing for years)  I felt a lot worse before starting chemo. Fatigue was always there and the nausea, loss of appetite, big weight loss, feeling of dread came before, but new symptoms came along with chemo such as nueropathy (numbness in fingers and toes), sensitivity to cold via touch or drinking (tied specifically to Oxilaplatin for me), chemo brain/stuttering, loss of balance and weakness in the legs, etc... It's not an easy or fun ride, but soon he'll fall into a routine and should get somewhat used to it. My attitude may be different than others, we all deal differently.  I'm now NED (No Evidence of Disease) after 6-7 months of chemo alone (surgery wasn't an option for me due to too many tumors in the liver), so things can get better in the near term.

8 years here stage 4. Dx at 46 and chemo first done at Stanford and then liver and 4 lung resections. I'm doing well, still teaching and have been very lucky. This disease is so unfair but try to be proactive, eat well, fight for surgery if you can get it and try to eliminte negativity in your life. The caregivers really make a difference and are the unsung heros in this. People appreciate the dr's and nurses and I got lots of help and love, but my wife picked up all the pieces and kept things together.

I was diagnosed stage IV 2 1/2 years ago, April 2012 with a single met to the liver.  I have been NED since surgery June 2012.  I had chemoradiation before surgery and 6 months Folfox after surgery.  Chemo was by far the hardest thing I have ever been through, harder than the 6 1/2 hour surgery. Every treatment was different, sometimes nausea, sometimes diarrhea, sometimes more tired than others but always tired!  He will get through this, time will go by and you will look back and it will be a memory.  Good luck with treatment.

Sandy

Steve444 said:

Stave IV

I was diagfnosed with Stage IV cancer with mets to the liver (innumerable tumors) in February of this year.  I started treatment immediately, and at the start I experienced incredible bouts of pain in my chest and abdomen.  It got to be so bad that I couldn't breathe in without intense pain.  I went to the ER and nothing was found outside of the tumors , pain meds were my friend for about a month.  The pain eventually went away as the tumors started shrinking from chemo.  The doctors said that my liver was most likely swollen causing the pain, though it was in areas other than just my liver.  All I can say based on my experience is deal with the pain as best you guys can and trust it will go away soon.  I'm so sorry that you're going through this and hope things get better sonner than later.  I know it's very scarry and defeating.

Fatigue/weakness/tiredness is normal having cancer with or without chemo, though chemo seems to cause this as well.  As an aside, I waited longer than I should have to get dignosed and treated (my symptoms had been ongoing for years)  I felt a lot worse before starting chemo. Fatigue was always there and the nausea, loss of appetite, big weight loss, feeling of dread came before, but new symptoms came along with chemo such as nueropathy (numbness in fingers and toes), sensitivity to cold via touch or drinking (tied specifically to Oxilaplatin for me), chemo brain/stuttering, loss of balance and weakness in the legs, etc... It's not an easy or fun ride, but soon he'll fall into a routine and should get somewhat used to it. My attitude may be different than others, we all deal differently.  I'm now NED (No Evidence of Disease) after 6-7 months of chemo alone (surgery wasn't an option for me due to too many tumors in the liver), so things can get better in the near term.

Hi!  I've was diagnosed Stage 4 in Dec 2010.  I'm still on chemo...I've gone back and forth for years.  Anyhoo, my purpose of replying to you is the 'chest pains' you talked about.  During my first round of treatments, I too had severe abdominal and chest pain.  My oncologist kept passing my chest pain off as heartburn but I knew it wasn't heartburn. After many many trips to the ER, one trip resulting in my heart stopping, the XRay tech at the hospital was the one who solved the problem.  I had a Portocath in my chest, as a lot of chemo patients do.  The line on mine was clogging/clotting so badly that it was obstructing the normal flow of the chemo drugs and, instead, escaping any way it could... it was blowing out my veins in my chest.  I had 3 more Ports put in and removed....they all failed me.  I wanted to share this with you in case you have similar circumstances.  

Shelleyb70 said:

Hi!  I've was diagnosed Stage

Hi!  I've was diagnosed Stage 4 in Dec 2010.  I'm still on chemo...I've gone back and forth for years.  Anyhoo, my purpose of replying to you is the 'chest pains' you talked about.  During my first round of treatments, I too had severe abdominal and chest pain.  My oncologist kept passing my chest pain off as heartburn but I knew it wasn't heartburn. After many many trips to the ER, one trip resulting in my heart stopping, the XRay tech at the hospital was the one who solved the problem.  I had a Portocath in my chest, as a lot of chemo patients do.  The line on mine was clogging/clotting so badly that it was obstructing the normal flow of the chemo drugs and, instead, escaping any way it could... it was blowing out my veins in my chest.  I had 3 more Ports put in and removed....they all failed me.  I wanted to share this with you in case you have similar circumstances.  

Hi there, I found this website after searching the net numerous times to try and find any information in regards to my moms diagnosis. She was diagnosed in July 2014 with Neuroendocrine-small cell edifferentiation of a colon abno carcinoma. It is extremely rare. she has stage 4. She has been doing the folfox treatment and then 2 weeks later carboplatine chemo...the dr is hopeful however it is extremely hard to see my mom going through this. my mom also has two portacaths in her chest and they are always blocked every time she goes for her treatment. I hope that your treatments are going great and I wish that someone would find a cure for this sickness. Be positive and never give up the fight! My prayers are with you.

I am so sorry to hear your husband was diagnosed with Stage IV colon cancer, especially at such a young age.

I was diagnosed in November 2008 (coming up on 6 years!!) at the age of 39.  I was having a third c-section and the doctor in the operating room discovered a lymph node in my abdomen during that surgery.  

I started chemotherapy 2 weeks after diagnosis and then had surgery to remove my colon tumor and liver tumors (5 spread out over the liver) in February 2009.  I have been NED (No evidence of disease) since that surgery.  I have had no treatments at all since Novemer 2009.  In addition to my surgery I had an HAI (hepatic arterial infusion pump) implanted at Memorial Sloan Kettering.  This pump allowed for the injection of chemotherapy directly to my liver and I believe has been a factor in helping me to maintain NED status for this long.

The most important part of your husband's treatment will be a liver resection.  Having 4 rounds (treatments) of chemotherapy prior to surgery is not uncommon.  Doctors will be able to judge his response to the chemo if they wait to do surgery until after those treatments.  If your husband is not operable in the liver after those 4 rounds you may want to consider the HAI pump as a way to get him to resection.  Ensure that any surgeon you consult with are either colo-rectal surgeons (not general surgeons) or hepatobiliary (liver) surgeons.  Do not take the advice of a general oncological surgeon regarding your husband's liver tumor.

Please PM me if you have any questions.

Best to you both, 

Amy

herdizziness said:

4 1/2 years being Stage IV treatment and surgery all these years

I didn't change diet, and only quit smoking last December when I realized after 4 1/2 years of dealing with this cancer I wasn't going to die anytime soon, so I figured I better quit.  My mets were in many places, lungs, liver, ureter of course colon and a couple of others.  Currently I have them still in lungs, liver and colon, they keep coming back, so I do chemo, then get surgery and keep going on.

I didn't change diet, this last colon tumor took awhile for them to find, so while they were trying to figure out what was wrong (fibroids was even suggested before my insistence they do a colonoscopy again), they located the newest colon tumor but by that time I was in hospital for malnourishment and now weigh 115 pounds (I was down to 110 in hospital) so they told me to eat ICE CREAM, MILK SHAKES, stuff with SOUR CREAM, anything fattening to go for it, this is from doctors and nutritionist.

When you do chemo and don't feel like eating much, let him eat what he wants, McDonalds or what ever, the weight helps your body remain strong for the chemo and future surgeries.  Don't limit him to what you think is nutritious but to what he wants to eat(all though good nutrition is always a plus and while I don't follow it, I do recommend it).  You'll find taste buds change and some food that was liked no longer is and others disliked are now liked.  I used to drink a six pack of coke a day, then one day I couldn't stand the taste of it, so I don't drink any sodas anymore, just water and milk and sometimes coffee, it wasn't a choice I made, it was a choice my body made.

As for Pete Lost at Sea, he has spent hundreds of thousands of dollars but still isn't NED, his CEA count was 28 a couple of weeks ago which is higher then my present 19.9.  He just has this philosophy that if he thinks himself NED along with all the other strange stuff he does to his body, then he is NED.  In one sentence he'll say he's NED, then the next is looking forward to being NED.  Several that followed him to Germany to try the treatments sadly are no longer with us. One deals with this disease the best they can, some by chasing dreams and quackery, some by traditional only, others with traditional and naturopath in conjunction with their oncologist and naturapath to make sure one doesn't interfer with the other treatments, it's to each their own.  

It's a lot easier starting out when doing chemo to eat several small meals a day rather then trying to eat the normal three meals a day, since he probably can't handle that, kind of like snacking all day when ever you can get him to eat something.

It iS normal to do chemo first to shrink tumors then do surgery in a lot of cases, so I wouldn't stress on that too much.  If possible he might want to cut down on the norco, it's rough on the liver and can cause constipation which of course leads to discomfort and bloated belly.  Just remember to check with the oncologist before stopping or changing or adding things to his regime.

Hopefully once he gets used to the chemo or has it adjusted to a more manageable amount he should do well, many people keep working through chemo, I babysat my newborn grandchild and attended college full time while doing chemo and surgeries.  Everyone is different.  He might also be a bit depressed (I mean really Stage IV colon cancer diagnosis is pretty depressing) and they have medications he can ask about for that.

The best part of this is that he has you.  Just one day at a time for now, it will get better.

Winter Marie

 

I just wanted to add that my grandmother had bowel cancer in the 1950s when she was in her fifties and had surgery to remove it and ended up with a colostemy. I don't know the details as far as any other treatments although I do know that 5FU was developed in the fifties so she could have had that. I also dont know what stage she was. Anyway, she passed away in her eighties and it wasn't from cancer. It was her kidneys and she was so healthy she was a candidate for a transplant. Her situation gives me tremendous hope.

Shelleyb70 said:

Hi!  I've was diagnosed Stage

Hi!  I've was diagnosed Stage 4 in Dec 2010.  I'm still on chemo...I've gone back and forth for years.  Anyhoo, my purpose of replying to you is the 'chest pains' you talked about.  During my first round of treatments, I too had severe abdominal and chest pain.  My oncologist kept passing my chest pain off as heartburn but I knew it wasn't heartburn. After many many trips to the ER, one trip resulting in my heart stopping, the XRay tech at the hospital was the one who solved the problem.  I had a Portocath in my chest, as a lot of chemo patients do.  The line on mine was clogging/clotting so badly that it was obstructing the normal flow of the chemo drugs and, instead, escaping any way it could... it was blowing out my veins in my chest.  I had 3 more Ports put in and removed....they all failed me.  I wanted to share this with you in case you have similar circumstances.  

Hello,

My name is Carolyn, i wanted to touch base with you and chat.  I was also diagnosed in 2010 with rectal cancer and have been off and on chemo since 2010, recently in late 2013 of october after complteting chemo my cea was rising had a pet scan and they found some nodules on my lungs, still to small to tell if it was cancer so my options were to wait or go back on chemo, i decdied to go back on chemo in january and was on it till April and then went on maintenance with xoada and erbitux once a week.  Now in october my number started rise because i was off chemo for a month again cause of hand and foot syndrome like nueropathy  side effects.  I was taking extra pills during the day   Now going back on the chemo but having a pet scan tomorrow to see whats going on>  what type of cancer do you have and how high has your cea been?  What chemo are you on now and how are you dealing with it.  Please reach out to me on this site or you can privatly email me at cbringhurst@caring.com or cheeks917@comcast.net  I hope to hear from you soon

Take care

Carolyn

Shelleyb70 said:

Hi!  I've was diagnosed Stage

Hi!  I've was diagnosed Stage 4 in Dec 2010.  I'm still on chemo...I've gone back and forth for years.  Anyhoo, my purpose of replying to you is the 'chest pains' you talked about.  During my first round of treatments, I too had severe abdominal and chest pain.  My oncologist kept passing my chest pain off as heartburn but I knew it wasn't heartburn. After many many trips to the ER, one trip resulting in my heart stopping, the XRay tech at the hospital was the one who solved the problem.  I had a Portocath in my chest, as a lot of chemo patients do.  The line on mine was clogging/clotting so badly that it was obstructing the normal flow of the chemo drugs and, instead, escaping any way it could... it was blowing out my veins in my chest.  I had 3 more Ports put in and removed....they all failed me.  I wanted to share this with you in case you have similar circumstances.