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Any Stage 4 Colon cancer Survivors here :((

Mariarish1011
Posts: 1
Joined: Oct 2014

Any Stage 4 Colon cancer Survivors here? my Husband was recently diganosed Stage 4 colon cancer which mets to his liver, hes only 24 and we just got married august this year, the doctor wants him to have the chemotherapy first before doing the surgery, they want to shrink first the tumor, im really worried today because after our first chemitherapy session hes having a little swelling on the side of his abdomen, ankles and his buttocks he is also having pain after he eats and his tummy was a little bloated. he did not vomit during the chemotherapy but he feels really tired and he gets a lot of sleep. is that normal during the first week of chemotherapy? hes taking some pain maedications ( Norco) and it made him sleeps more. he eats 3 times a day breakfast, lunch dinner but he eats a little unlike before. please enlighten me :( im really scared :( im happy i found this site so i can read survivors stories to keep me positive :(

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

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.

AJ787
Posts: 1
Joined: Aug 2018

Hey JanJan63, I hope you are doing well. I have just joined this forum but I’m Uk not USA and have found the stories very informative and positive and that’s what this disease needs! Your story really touched me and I was both saddened and inspired by what you’ve been though. My partner has just recently been diagnosed and it’s been tough but we know there’s real tough times ahead but were ready to fight. Wishing you all the best, I’m a horse lover too and they’ve always helped through the bad times. Take care x

thxmiker's picture
thxmiker
Posts: 1282
Joined: Oct 2010

During my first time of chemo, Folfox.  I had to eat small meals.  Nausea is a common side effect.  With Folfox I also had trouble maintaining body temperture. If I got hot, I could not get cool, and if I got cold, I could not get warm.   I could not touch cold things nor drink cold fluids. Cold things would burn my skin amd throat. I also spent a lot of time at home, so I taught myself to bake.  The smell of food was comforting to me.  Plus all of our friends got a lot of treats.

 

If we knew what type of chemo we could give more specific answers.

 

I am 51 and have had Signet Ring Cell cancer for 7 years.  It became stage IV in 2010.  

Diet, exercise, attitude are going to be crucial!   No more fast foods, chemical based foods, like premade boxed foods.More plant based foods, and less red meat.

 Exercise, because the battle is difficult enough.  When you are in good shape the battle will be easier.  Recovery from surgeries will be easier, etc...

Attitude is important.  Life is not picking on you.  Having cancer is just your new normal. Cry it out, then start thinking in more productive methods. 

 

To treat nausea I use ginger root a lot.  Sucking on dry candies ginger root soothes my stomach. I take it with me when I receive chemo.  I taste al of the chemicals they give me during chemo. They are really nasty to me.  The ginger in my mouth allows me to put my thoughts else where. 

 

Welcome to the board, and we are sendding our thoughts and prayers for your husband's good out come!

Best Always,  mike

Steve444
Posts: 105
Joined: Sep 2014

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.

Shelleyb70's picture
Shelleyb70
Posts: 2
Joined: Oct 2014

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.  

Hereformymom33
Posts: 1
Joined: Oct 2014

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.

corkie00's picture
corkie00
Posts: 10
Joined: Oct 2014

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

 

 

corkie00's picture
corkie00
Posts: 10
Joined: Oct 2014

 Tongue Out 

 

corkie00's picture
corkie00
Posts: 10
Joined: Oct 2014

I wanted to make sure i reached out to you but wanted to you to know it's from me, my name is carolyn my user name is corkie00

 

this message is for Shelley

Easyflip's picture
Easyflip
Posts: 588
Joined: May 2013

I became stage 4 August of this year with a met to my liver. It was resected 3 weeks ago and I'm not on adjuvant chemo and awaiting my next scan in January. I had 12 rounds of Folfox after my colon resection. Folfox tires the heck out of you but I found the 'break' week to be pretty symptom free. I still have neuropathy but it's not too bad. My life right now is great! it does get better! I just went to the Cal-UCLA game and I just had a delicious vegetarian meal with my beautiful wife and I'm now watching TV and having a glass of one of my favorite Zinfandels. I know it's scary but you just keep on keeping on and enjoy the positive things life has to offer. I'm also painting my cancer experience, it's going to be hopeful and somber but joyous. Oh, and the Giants are in the World Series, go Giants! Good luck, try to  stay positive, you're newlyweds! You love each other, that's mostly beating cancer right there,  no sweat!

 

Easyflip/Richard

impactzone's picture
impactzone
Posts: 541
Joined: Aug 2006

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.

janderson1964
Posts: 2215
Joined: Oct 2011

I will officially be a 9 year stage IV survivor this Saturday and still doing well. I do have visible disease but it seems to be stable at the moment.

Momof2plusteentwins's picture
Momof2plusteentwins
Posts: 508
Joined: May 2012

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

lilacbrroller's picture
lilacbrroller
Posts: 412
Joined: Jun 2012

I am not NED by a long shot but have read about other Stage IVs who achieve this state, so I know that it is possible.  Many folks are temporarily NED and the cancer comes back, and some are lucky to be NED permanently.  If I had to rank the factors leading to NED for Stage IVs, or even extended survival beyond the 1-2 year mark, this is how I would do it more or less -** I am assuming insurance coverage or some ability to obtain treatment :

1) location of tumors/how much the cancer has spread

A person with mets in one location, such as just the liver or just the lungs, has a much better chance for extended survival if he or she can get the right treatment. These folks are able to have surgery, or surgery plus a liver pump or some kind of direct delivery chemo, or other types of targeted treatment (radiation, RFA, etc).

2) number of mets

duh. the fewer mets the better. 

3) health of patient 

Are you healthy enough to even have surgery, or receive chemo? Makes a big difference and can affect treatment decisions.

4) response to chemo

Some people respond well, others don't.  The better the response, the longer patients seem to live.  chemo seems to be the preferred treatment for Stage IVs who are determined inoperable.  Some people are "superresponders". I think one board member's mother is like this - she does everything wrong (eats fast food and smokes, I think) but her body loves Folfox, or Folfri, and her tumors are evaporating.  yee haw! 

5) quality of primary oncologist

The decisions made by one's primary onc are key. What to do when, surgery vs chemo, what chemos to try and for how long, etc. Your primary onc is your coach and is supposed to have the strategy.  Some are good, some are not, or have too many patients and can't give your case the time and attention it needs. (sigh)  I don't like it when doctors write me off as a Stage IV SOL, and some don't want to waste their time on me b/c of how many mets I have and where it's spread. arrgh. 

6) quality of medical care in immediate vicinity to the patient

Some people are lucky enough to be within driving distance of, say, Stanford or Sloan Kettering, and can utilize these clinics as primary care centers. Other people live in areas with varying levels of care, but not necessarily cutting edge equipment or treatments, or specialists who would want to take risks, etc.  It breaks my heart to read stories on this board from people who suffer due to poor medical care. 

7) financial resources of patient

This could be ranked higher, but not everybody can afford to travel to Stanford or MSK, or overseas for potentially lifesaving treatment (Pete Lost at Sea, who after spending hundreds of thousands of dollars out of pocket for European treatment and supplements is actually NED now...)  If you have the means, you can shop around and incorporate more opinions and treatments. If you don't, your options are limited and you're stuck with whatever is available locally which may not be so good....

8) decisions made by patient and caregiver

how active of a patient or caregiver are you? Are you going to seek a second opinion if the Onc's recommendation doesn't seem or feel right? How much research on the internet, etc are you going to do in order to become educated about available treatments?  how much do you/your caregivers want to do to fight the disease and live longer?  How much risk are you willing to take? Are you going to travel to see six surgeons to take out your liver mets, having already been rejected several times? These are definitely important factors, especially for patients who are not close to quality treatment centers and/or doctors, and have to do a lot of the research on their own. Tanstaafl is amazing - I don't understand most of what he says (!!) but the choices he and his wife have made (chemo from Japan, lots of vitamins and alternative therapies - correct me if I"m wrong) have kept her alive for many years. bravo! I'm sure that if they had just been passive, the outcome would not be the same.

9) diet, positive attitude, prayer, luck (!!!),  a good support system, and other non-quantifiable factors

These are important. I lumped them together and listed them last, but I do think any and all make a difference.  

Thoughts anyone?  Additional factors? 

I can't imagine doing research without the internet. What did people do back then? 

cheers

Karin

 

 

 

harleywiz's picture
harleywiz
Posts: 51
Joined: Aug 2014

18 months for me nov will be 12 scince chemo

Annabelle41415's picture
Annabelle41415
Posts: 6555
Joined: Feb 2009

So sorry that you had to find this site, but you will be so happy you did.  There are a lot of caring, knowledgeable people on here that can help you answer a lot of your questions and concerns.  I'm sorry to hear of your husband's diagnosis and especially at such a young age.  Chemo can cause different symptoms in different people and I'm sure that others on here will wel you as well.  Please make sure you let your doctor know of anything that might alarm you even if you think you shouldn't bother.  They owe you as a patient to be attentive to your concerns.  Wishing your husband success in his upcoming treatment.  There are many people here that are in your husband's situation. 

Kim

mom_2_3
Posts: 965
Joined: Nov 2008

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's picture
herdizziness
Posts: 3642
Joined: Apr 2010

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

 

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

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.

Nana b's picture
Nana b
Posts: 3045
Joined: May 2009

http://thetruthaboutcancer.com/live/episode11.php

PhillieG's picture
PhillieG
Posts: 4903
Joined: May 2005

One Onc wanted me to do surgery first, then chemo. I did not like his "forecast". I went to get a 2nd opinion at Sloan and my new Onc advised that we shrink the tumor first, then do surgery.

That's what I did over 10 years ago. I may be wrong and I'll never know, but I believe that if I followed the first Onc's advice I would be long gone...

This is a great website. I've been a member since May 2005 and it's been very helpful. Just try to keep in mind that everyone has a story of what did or did not work for them. That is their story. We are aLL very different and what worked for one may not work for another. The same hold true with things that didn't work for someone may work for you. Also, there are probably more ways to treat cancer than there are ways to get cancer.

There's no right way or wrong way to treat cancer PERIOD.

My best advise is to find the best team you can at a cancer center. Nice bedside manners does not always equate to someone being a good Onc/Dr.
Do you want good, or nice?

Doreen65's picture
Doreen65
Posts: 52
Joined: Aug 2005

Just wanted to give you some hope..... I traveled this scary road and looked for posts like this to find long term survivors.... Never give up :)  If you have any questions feel free to contact me...... XoXo

dorookie
Posts: 1736
Joined: Jul 2007

Have been NED since November 18th, 2008, and still counting, just had my scans and again all clear.  I was young when first DX, but no where near as young as your husband, i will keep him and you in my prayers.

 

HUGS
Beth

babywatson
Posts: 9
Joined: Feb 2017

I feel like I must be in denial. I was first diagnosed with stage iv colon cancer in January of 2017. No symptoms save nausea before that. Oh, and all of a sudden I had dropped 15 pounds, but I never noticed it. 

Since January I have been having chemo every three weeks. Folfiri, they stopped the oxyaplatin at treatment 8 because the neuropathy in my hands and feet became so bad. No surgeries. I have lesions on my lungs and liver. Mysteriously, there is no tumor in the colon. 

I feel absolutely fine and dandy except for maybe two days when they give me the chemo and then attach me for 46 hours for the 5-FU. 

I still don't believe I am sick (except for the cancer). I am 55, just turned in May. I was able to get onto disability for the first time in my life. Even today I feel like I could still work if my workplace had been able to deal with the frequent absences due to doctor appointments, etc.

They won't do surgery because they say my liver is functioning normally. I feel like I'm just coasting between scans, which say the tumors are shrinking slightly, never enough.

Any words of advice?

Mikenh's picture
Mikenh
Posts: 777
Joined: Oct 2017

I'm stage 3 so it's a lot different but I'm a few years older and felt fantastic right before diagnosis. I feel very good right now after chemo and radiation shrunk the tumor. It's nice to know that chemo takes care of the tumors in that they don't grow, spread and that they shrink. My only suggestion on the inconvenience of 5-FU is to suggest Xeloda instead.

If I were in your position, I would get a second opinion at one of the major cancer centers (you may have already done this) - they might be more willing to try more aggressive options such as surgery.

Kristine1217
Posts: 5
Joined: Oct 2017

Stage VI with Mets to the lung again,  since 2013. 

outlaw41's picture
outlaw41
Posts: 2
Joined: Mar 2017

I was diagnosed with stage 4 colon cancer which had metastised to liver (many tumors in liver, colon seems to be non-involved ?? hard to understand  but it is what it is. I mmediatey started chemo therapy regiment of folofox following portacath insertion, I had a colonoscopy  done in Jan. 2016 with precancerous polyps removed advised to have another in a year. I became tired easily, weight loss of 15 lbs. over 3 month period, loss of appetite. Never dreamed it was colon cancer but here we r today. The folofox with erbitux treatment caused typical side effects of rash, mouth sores,loss of taste,appetite, and neurpathy in hands and feet. Erbitux and chemo therapy was stopped on June 1,2017 when i developed ventricular tachyardia and 25-30% function of my left ventricle heart chamber. I spent 10 days in CCU of Albany Medical Center.Blood counts were good , petscans stable no new activity or increased activity.Erbitux in .250% cases can cause low magnesium which can lead to v-tach. Sent home with external defrillator for 6 months to help prevent SCD or SCA. Resumed chemo therapy in August 2017, because cea numbers climbing up once again, liver functions are stable, petscan showed somne new activity, expected because of no treatments. Throughout this journey i have counted heavily upon my attitude, my faith, support of family ,friends, and speaking with many, many victims of our disease that affects all. My four legs of the table i found from a cardiologist medical article is a positive attitude, plenty of rest, exercise, and a healthy diet which we work on 24/7. Please reach out to me if you need to vent, helping others helps us in our recovery. God bless us all and help us to recover.

blessed39's picture
blessed39
Posts: 90
Joined: Dec 2016

Dear Mariarish1011, I too had stage Four and have been in remission for several years. Please read my story

entitled "How I Beat Stage Four Colon Cancer" just go to my page and click on blog and it will take you to my story.

Good Bless you and your husband    blessed39

 

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